Covid for 4 weeks & still bed ridden. Anyone else had prolonged severe illness without hospitalization

Hi Gary,

How are you doing?

I'm moving country in a couple months so all busy my end.

Still have a cough and a tight chest that comes and goes. Super annoying.

My white blood cell count is also coming up low in my blood tests and warrants further investigation. I guess that's why I've been so prone to infections since covid.

Res x

Hi res you moving countries what a big step tight chest is the norm for most of the long term covid I think we are now all thinking about the winter it's 6 months now for lots of us and not over it yet but I'm certain I'm close to it but who knows with this bloody virus Gary

Thanks Gary!!

Hi Res

Nice to hear from you. We all seem to be in the same place now and still having the tight chest and cough and a bit of mucus but overall things much better.

Hope you are going somewhere warmer and sunnier than the UK! I feel that if I could go and lie in the sun for a couple of weeks it would really help but who knows? Just pretty certain the UK winter isn't going to help things improve.

I bet when you wrote that first post you didn't think we would still be here posting six months later! Maybe it was just as well we didn't know!

Lx

No worries lulu I couldn't find the last messages anyway saw yours then when I tried to find it again it didn't come up I'm certain that we are nearly there because the tight chest was like holding me back and I'm sure while I had it there was the tension now the tension has mostly gone I feel a lot better all the stabbing pain I was feeling has eased as well so I think your specialist is very good and may be right but as we all know you think you're getting better and it kicks your backside I do feel like we are close to the finish line though Gary

I'm with you here on page 74.

Good to hear from you Res. Like Lulu said, unbelievable we're still chatting symptoms 6 months on. Sorry you've still got fatigue, that one's hard to shake.

I seem to be going through another wave of muscle pain and fatigue and think I've got neck tension like you had Gary. Sign I need to take it easy.

Lulu, there are people out there that just don't believe in the virus and think the govt is just scaremongering (i actually had my first conversation with someone like that) that would be the guy coughing at the restaurant 😒

Yeah, i think if you'd told me it would continue another 6 weeks let alone 6 months I'd have wanted to cry!🤣

Yeah, not waiting around here anymore. The current lay of the land is bleak!🤣

Little sugar does seem to linger on and on.

Am quite worried about the drop in white blood cells too. its not insignificant and with winter coming is not great news. Will see specialist again before I go to see if there's anything can be done about that.

Hi dane just to let you know that the tensions will go I had the head ears and neck and shoulders they have all but the left ear now and again gone and the tight chest is easing and I feel will be going soon Gary

Yes res it certainly looks like we all are concerned about the winter be nice if we are all over it before then and we can try and get on with it Gary

Thank you Gary!!! 😁 Thank you Lulu! Fresh page 74! Who would have thought we'd have 74 pages 🙄😮

On the subject of inhalers I've started using my ventolin inhaler on a regular basis. I get so breathy after eating and at other times of the day, so I thought I'd give it a go. I do think it helps me, but I'm taking it out of desperation really.

Lulu I'm taking omeprazole which was suggested for my lumpy throat. No idea if it helps but I don't have indigestion at least! 😂

I've noticed lately an increasing number of people I speak to all know someone like us, it might be a friend of a friend etc but I am thinking there are more of us than we realise. The story is always the same. I also know people in Spain who recently sent me two Spanish news articles about 'us'. The stories are all the same too. No treatment and not taken seriously by their GPs, so we're really not any different. Hopefully our voices will be heard eventually.

Take care everyone x Stuart

Hi Dane, I have had, and still do have the neck tension. Especially at the top where it meets the skull. I also get a burning feeling in my joints sometimes especially when hit with the fatigue.

As for ignorant people - I happened to post on a comment forum a few weeks ago where I noticed some people dismissing the virus as a Government plot to control us all and that it didn't affect you if you're fit apart from a bit of flu for two weeks, you know the kind of thing. I commented about our situation and got a number of sarcastic dismissive replies. I'm sure you can imagine. It made me pretty mad. Some people just don't want to listen.

Hi Stuart I've got a feeling that the gps and hospitals knew that we were out there but because they didn't know what to expect or in what capacity they were told to send us home unless we couldn't breathe properly then maybe we would be looked at more seriously I remember a conversation I had with a young doctor who didn't have a clue as to what to do with me and said because I worked on the railway maybe I had a chest infection but he never checked the xray and gave me antibiotics now like you said there are lots more people like us and if there is a second wave they should know now who has it and what to do but I wouldn't put money on it 😂 Gary

Perhaps the NHS might prescribe it for us all 6 months on a hot island with only us 😂😂😂

Hi all I finally received a letter from the speech and language therapist my gp receives one as well they are going to refer me to an ent assessment so I can finally get to check me out I'm still getting tension in my left ear and not sure if my throat has healed so might as well get it checked even though I had given up on them Gary

That's great Gary! Finally some proper help. Hooe the referral doesn't take too long.

I've had all kids home since Monday because 2 of them came down with sore throat. Now the 2 have colds and thankfully don't need testing because don't have other symptoms. Not that we could get a test if we needed, there aren't any to book, I checked. Lively over here 😄 hopefully i can send some back to school tomorrow.

Have had pretty strong muscle aches in the meantime, it's the 2 steps forward, one step back feeling...

Hi dane yes I know what you mean about testing they haven't got any thing right from the beginning so they are not going to get it any better for a long time hopefully you can get them back to school they had one test positive in my boys school and then his brother was also positive but not their sister I was taking hemp oil when I was getting tension I think it was really good only used flarin when I got head tension but who knows what works hopefully your well into recovery now dane good luck with the kids Gary

Hi Gary everyone

Good news you will get to see an ENT specialist, you will probably have the endoscopy to look down throat - good to get it checked out, sure it must be healing by now but good to be reassured.

Sorry about the kids Dane, your freedom was short lived!! It must be a nightmare for the school too as most kids have colds/runny noses this time of year, it is hardly surprising the testing centres can't cope but think will have to ramp it up as it is not going to get better any time soon.

Have felt pretty good today went up to town for lunch, train was fine everyone had masks and socially distanced - not sure what happens during rush hour but people seemed sensible. Had a couple of cocktails and life seemed good!

Am still not back to baseline but I can see continued improvement, albeit really slowly, and that is all I ask for 🤞 Still tired at end of day but that could just be an age thing!

Hope everyone doing ok, be good to get some updates to see what symptoms we are all dealing with now. Are we all nearly there?? I really hope so.

Lx

Hi lulu I don't mind what they do now I never thought she would get back to me or my gp I'm hoping they sort it soon but not bothered if they don't used to it now I know what you mean about baseline I keep thinking the same and it's not letting me over the line felt awful earlier today not sure if we are nearly there or not Gary

Yes Lulu that was a few days of peace and quiet which I thoroughly enjoyed 😄 . Celebrated my birthday today with my husband at work and kids at home!

Yes they really need to get their act together with testing, seems like every 2nd family i know is self isolating because someone has symptoms.

Great you had a good day Lulu and feeling good, I'm with Gary I'm afraid, don't feel I know where I stand as experiencing muscle pain the type I haven't felt in months, so odd for it to come back. Hope it goes soon and hope you feel better Gary.

Ah Happy Birthday Dane! Probably not what you had planned but hope you ended up having a good day.

Seems they didn't take into account the kids going back to school in the testing fiasco what a complete sh&t show this is. Just can't see how we are going to get out of this mess.

Hope the muscle pain eases off and the kids get back to school soon and you can put your feet up for an hour or two and rest!!

Take care,

Lx

I know how you feel Gary it's like we've all just been let down by the system and have no expectation of any help - we've had to fend for ourselves the whole way through - if anyone asks how I am now I just reply "fine" - it's easier than trying to explain!

Hope you feel better tomorrow, I follow quite a few people on twitter with long covid and am definitely seeing people reporting big improvements around 6 months so stay positive and we will get there.

Take care,

Lx

Hi lulu yes I will stay positive I'm just getting tension on the left ear now tight chest now and again but it is easing the odd day when I don't feel good I will wait for the gp to answer the letter and go from there I can relax if I feel the need to I go back to work on the 28th and I still have leave to use if I need it after just ride it out now till we get there I have just read an article in the guardian people are not getting tested because they don't have enough and its the security guard who tells them it's a shambles so they have to either try again or self isolate Gary

Seems we are about the same now Gary.. overall quite good just a few symptoms kicking around. Good you can take time off work if you need to its always reassuring. I have been really pushing it last few weeks and been busy out and about every day but seem ok apart from tiredness in evening, throat seems better now I'm back on Lansoprazole and coughing and mucus much less - didn't really notice it till I look back but everything has improved a lot even since I was away with my son 4 weeks ago.

Testing such a shambles - will probably have the security guards giving full medical advice next - they probably know more than the GPs which is not difficult!

Enjoy your day and hope everyone doing ok

Lx

Morning lulu yes it's just lingering for us I think hopefully tension will go soon and tight chest follow I can deal with it now just now and again feel a bit ill I'm doing chores and got a meeting at school later was thinking about a week away might just leave it till next year though enjoy your day too Gary

Hi everyone

It seems we are all about the same with a few lingering symptoms. I think I'm 8/9 at the moment depending on whether I've done too much. The cold symptoms are always there in some form, but swollen/sore stomach is back when I've done a lot and those hot/cold flu-like symptoms seem to come as a warning to have a rest! But everything is slowly improving so I'll get there eventually hopefully

Have to keep positive and carry on with little or no help

All the best everyone

Happy Birthday for yesterday Dane, hope you get the kids back to school

Morning Joanne yes it's a long long road with many a lingering symptoms we are all experiencing hanging on issues enjoy the rest of your day also belated birthday wishes dane hope you managed to get kids back to school Gary

Hi Lulu and everyone!

Thought I'd give you an update. I've not been feeling that great, I'm definitely worse than I was 5 weeks ago as I can't walk as far or as fast.

I have had a bit of a palaver with my new doctor surgery. I won't go into it as it pees me off too much. Anyway after a frustrated phone call yesterday with the surgery, I have had an ECG today as I have had chest pains throughout these months but worse these last two weeks. Turns out I'm tachycardic, so my heart is beating faster than it should be. This doesn't surprise me at all and explains much of what I'm going through. I'm now waiting to see if the docs take it further. At least I got checked out by the nurse today too, who seemed a bit concerned.

I've also managed to speak to a doctor (who could almost pass for human) this morning. He's given me steroidal inhalers to try and a sick note so I can apply for ESA payments. I feel a bit happier at least.

Tried finding out about my respiratory referral. Called a referral support helpline and was told that they are still getting through the referrals pre covid hitting!!! So I have those people, plus all the other respiratory cases since then up to June in front of me. So.. I'm stuck.

Apart from chest pain, my main symptoms are fatigue, breathlessness, cough and generally feeling unwell with occasional good patches as long as I do nothing. Pretty fed up and wondering what the future holds.

Sorry to be a bit down. Good to see some of you feeling closer to normal.

All the best to everyone.

Stuart

Hi Stuart and everyone, sorry to hear you've not been great. I had the heart trouble early on but thankfully mine has settled now. Lulu you asked about how we're all feeling. I've felt an improvement but like you mention Joanne still congested like cold symptoms but not as bad as before. Tiredness has improved as well. How are you doing Jim ? I know we're both around same time frame. Happy belated birthday Dane !!

Hi Gary at least you can have a check over put your mind at rest.

Think the hot weather is affecting me with my sinuses and mucas bit of hay-fever felt tired the last few day with having to wear the mask in this heat not good. How is everyone else this week. I give myself 9.3/4 this week.

Happy birthday dane 🍰🍻🎂🎈🎈

Hi Steph, was anything done about your heart problems or did it just get better without treatment?

Ps Dane, I see it was your birthday. Hope you had a good one ☺️

Hi Stuart having never suffered with palpitations before the illness they were quite bad early on. On the 3 occasions I saw paramedics the ECG's they took showed tachycardia and they advised me to speak to my GP and he arranged another ECG in surgery. This didn't show any abnormalities. I think they have cleared up now as I haven't had an episode for a while now. Hopefully you get seen Stuart as we've been suffering for nearly 6 months now !!

Thanks Steph I'm glad it seems to have cleared up for you. I'm waiting to see whether the docs do anything now. We'll see. I'll update on here once I know something. Hope you have a good evening 🙂

Ps damned autocorrect put your name as Stephen and I didn't notice🙄. Edited now 😉

Hi Stuart

Sorry you're not well. I had the fast heart rate, I had ecg at doctor's surgery which showed tachycardia. I had blood tests to find out why, they came back ok and haven't heard from doctor since. My HR seems to have gradually improved, but it still seems high when I'm walking, especially uphill.

Hopefully yours will settle down too. All the best

Thanks for your reply Joanne. Seems to be part of this illness. I hope your heart rate settles. Have you considered going back to the docs to get it checked? Its so strange isn't it, all of this? Weirdest thing I've ever experienced. Have a good evening 🙂

It's awful you haven't been cared for this far Stuart. Sorry you're still feeling poorly. I guess the good news about the fast heart is that lots of us have had it and it has calmed on it's own. I also had it in weeks 5/6 and it was scary but thankfully it seems ok now. I'm supposed to be getting an appointment with a cardiologist but haven't heard from the hospital so will chase with gp.

Feel good Stuart, better times ahead.

Thank you all for the birthday wishes!

(2 kids back to school today, next 2 tomorrow!)

Thanks so much Dane. I really appreciate your words. It does give me comfort knowing it's not just me. To be honest I was relieved they detected something as it shows I'm not making it up!

Yes make sure you chase the cardiologist appt, I'm glad I chased my ECG because they made such a c**k up at the surgery that if I hadn't called to bug them about it I wouldn't have got it at all as it had been noted that I wouldn't have it until I'd been seen by the respiratory team! Possibly 6 months away. Unbelievable.

Have a good evening Dane, good luck with school stuff. Stay well.

Hi Stuart and everyone

Sorry you are having these problems Stuart. I had the HR problem too and still feel my heart rate is a bit high at times - I checked my Apple watch heart App and it showed my HR had gone up to 203 bpm back on 20th August - I know what I was doing as it was when I was away and did a really long walk but no hills - when I told the respiratory guy last week he said it wasn't possible for it to be that high I would have collapsed!! - luckily I didn't notice the reading until two weeks later when I was looking at my overall HR and worked on the assumption I am still here so who knows?!! I have thought about seeing a cardiologist privately but things have definitely improved although I still notice it from time to time. Hopefully you will be seen soon but looking at the messages seems we have all had this at some point and I have read others in support groups mention the same, so try not to worry too much.

Great news Susan you are 93/4, I'm probably same not quite there yet but still improving. Think you said you were starting nights, really hope going ok.

Two down, two to go Dane 😂 feet up on the sofa for you tomorrow 🤞!

Take care everyone,

Lx

Morning lulu and everyone I'm still waiting for the phone call or letter from the gp maybe I will get it as a Christmas present good to hear from you Susan seems like your doing more work now maybe the mask takes time to get used to two kids back to school is good dane had to go see the headmaster yesterday he actually is a good one really helpful I didn't get the cane either 😂 your gp is about as good as my first one Stuart actually my new one isn't much better hope you improve soon steph and Joanne hopefully your colds get better soon how you feeling Jim are you OK Gary

Thanks Lulu, nice to hear from you. Yes I can see I'm not alone with the heart problems. I have had it for quite a while but I didn't do anything about it, probably because I didn't want more doctor hassle 🙄 I'll be interested to see if they contact me about it. I'm not holding my breath though.

How's everyone today?

It's nice weather here on the south coast so I'm soaking up some sun. Amazing how beneficial that feels.

Hope you get your phone call /letter from the gp Gary.

All the best to everyone.

Hi Stuart like you I'm not holding my breath either not that I'm bothered I think I'm improving every day little tension still and top of my throat gets tight now and again besides that all good Gary

Great to hear you're improving Gary keep it up ☺️

Hi Stuart, everyone

Glad you have been able to enjoy the sunshine, it makes such a difference to how you feelI'm the same just fed up with it all now - have literally run out of steam but do hope they follow up with cardiologist appointment to put your mind at rest.

I've felt pretty good last couple of weeks but woke up this morning feeling chesty, coughed quite a bit and pain in left lung when I inhale - no idea why but seems better again this afternoon - just a little kick up the backside probably to remind me I am not fully recovered!

Reassuring to know all the GPs are as useless as each other Gary, thought it might just be mine 😂

Two people at work have kids tested positive - huge impact on the rest of family as all need to isolate - one has had to move the child out of the house as his brother has health issues - what a complete sh&t show this is, just can't see an end to it all. Reckon there will be a lot of Netflix watching this winter as don't think will be going anywhere!

Lx

Hi everyone 😃

Hope you're all ok.

Lovely day here, not too hot just right for walking, done my 30-40 mins. Had a couple of rough days as I forgot to pace earlier in the week, I don't learn! I was just making the most of having more energy and got carried away. I'm feeling better now though and remembering to have rests

Hope you get follow-up from doctor Stuart and your HR improves. Mine has gradually improved and seems closer to normal now

Have a good day everyone

Hi Joanne I know what you mean about the energy it is a game now we just have to know how to play it don't over do it it bites us lovely weather today waiting for my daughter to finish work then walk home with her then take dog for a walk and me exercises are done most of the gps are a waste of time lulu probably some out there that will do the best for their patients be nice to find one got the heavy hands and legs today with the tension in the ear enjoy the sun gary

Hi guys,

Did half an hour unscrewing a wooden platform yesterday. That was a mistake, as I spent the rest of the afternoon shattered,

Been for a further CT scan today but this time with contrast. The contrast injection is horrible and gives you a very strange feeling inside. Don't feel too clever now.

For some strange reason it's brought on mucus!

Hope everyone has a lovely weekend.

Jim.

Hi Jim just goes to show you gotta keep working out how to play and don't do too much was wondering how you was hoping you feel better soon and try and have a good weekend gary

Hello Joanne, thanks for your words. I didn't hear anything back from the gp after my ECG result. I phoned just now to find out what to do next, the receptionist said the ECG has been signed by a doc with no notes, so she presumes that they aren't worried about it. I said that I was worried about it though obviously. She said they aren't. I said it's not their body though is it?

So I have to phone on Monday to speak to a doctor if I want. I can't believe after 25 weeks of being ill they don't think it's worth telling me about it or that it needs further investigation. So annoyed again that I can feel my chest hurting quite a bit. Am I being unreasonable to expect a tiny bit of communication?

Joanne do you monitor your HR? I think it's great that you can walk for that long. I'm half that.

Have a good day everyone.

Take it easy jim r u on lock down up there, they r in Burnley 😊

No lockdown as yet Sue but I'm sure it'll happen.

Everyone I've seen today on my hospital have been so blaise about it all. The only group of people wearing masks outside were the over 50's.

Hi Stuart

That's awful that they are showing so little interest in you. Mine was similar, but I did have follow-up blood tests. Hopefully it's because they realise it will improve by itself, but it's not very reassuring for you

I used a cheapish wristband to check my HR when walking but it wasn't very accurate and worried me even more. So I ended up getting a runner's chest strap! It gave me the confidence to go walking knowing I could check my HR. I use it with an app on my phone which is really good as it tells me my distance, pace and HR, so I can see the very slow improvements.

Hope you're feeling better,Jim, sounds an awful experience at the hospital

Enjoy your walk Gary, yes we must keep pacing

Hi Stuart,

Totally shocking treatment.

I've every right to feel utterly let down.

Unless you've got your cheque book out no one's bothered.

It makes me wonder what Doctors and hospitals have been doing since the first wave dipped.

Sorry Stuart. You've every right to feel let down. Oops

Morning guys,

There's definitely some correlation between weather changes and my symptoms.

Over the past few days the weather has been summer like, however today is autumn. The result being cold symptoms yet again.

Hope everyone is well.

Jim.

It's bad people r so stupid! Just had my flu jab done ill let u all know how I get on, it's OK at mo 😜

Hi Joanne, thanks for your response. I'll have to look into HR monitors.

I would have at least expected some kind of follow up blood test after my ECG for a 52 yr old complaining of chest pains.

Jim, I agree about the weather it does seem to affect me too. I'm much better in the sun. Makes me dread the dark days ahead and the central heating coming on.

Susan, yes please keep us updated on the jab.

Good morning to all, hope its a good day.

Morning Stuart,

I'm full of dread and apprehension for the forthcoming autumn and winter.

Today, Yorkshire is gloomy and overcast with a distinct chill in the air. It's not at all inviting but hopefully it'll warm up a bit this morning if the sun makes an appearance.

Sue I second Stuarts comment and would love an update on how you are since your flu jab. One other question, are you having a pneumonia jab?

Hope everyone has a wonderful Sunday.

Hi Susan & everyone

Good to get the flu jab out of the way Susan am sure it will be fine and should protect you. I will definitely get it in another few weeks.

Had a couple of days where not felt that great, especially yesterday. No idea why but was coughing again (anyone else still coughing?), bit chesty, mucus and sore throat. Was also exhausted think overdid it last week but this set back made me feel really anxious - think also the rising cases in making me anxious and like Jim says the thought of the winter. Felt better today but still have mucus in back of throat which makes me cough. I go out as love being sociable (following all the guidelines) and then worry I've been out and who I've been in contact with. Just so scared of catching it again when still not recovered. Seems the only safe option is to stay home!

It's pretty bad the doctor didn't call and run through the results with you Stuart to give you some reassurance at least, not good enough to just say if you don't hear all fine. Am just not sure what the GPs are doing at moment. Had a melt down at mine on Friday just fed up with being fobbed off and basically have had to pay privately to get any help.

Anyway, hope everyone doing ok and making progress. It is definitely a long road but have to stay positive and believe things will continue to improve.

Take care,

Lx

Hi Lulu and good morning to all.

I'm still coughing Lulu, especially the last few weeks. I remember back in the summer having good patches where it disappeared but now it is a daily thing and it seems to be something I have to do to try and clear that congested chesty feeling and also to clear mucus. This sounds terrible and yucky but sometimes I cough and I have thick globules of mucus flying out of my throat that seems to have gathered there 😣 its surprising and weird.

My mum said to me yesterday that I haven't had a good patch for a while now, which is true but I hadn't thought about it. I was having more and more good patches in the summer but these last 5 weeks I haven't had a single one. I can't walk as far as I was say 5 weeks ago without a bad reaction. There is always something.

I agree about the ECG thing, what's the point of having it and being told you're tachycardic only for it to be passed off as nothing, with no communication or reasoning ? I was going to phone up this morning to book a chat about it but I have decided to delay it. I couldn't be bothered with sitting on the phone for thirty minutes trying to get through with the 8am rush for appointments. I dread all gp appointments now as they generally make me feel worse.

What did your gp say to you after your meltdown Lulu?

Also, with the flu jab, is it something your gp can arrange or are you going to pay for it? I asked about it but was told it was for people with underlying conditions. I'm interested in the pneumonia jab too but again I don't know if its a good idea or not.

With winter coming I think the prospect of dark days and central heating worries me with the way my breathing is. I am hoping for a miracle recovery and as much warm bright weather to extend into the winter months as possible.

Despite all my apparent doom and gloom I am trying to stay positive. Today could be a good day. Or tomorrow! Mustn't give up.

Hope everyone has a bright and well day.

Stuart

Hi all a carer Stuart so get the jab but I think they r doing all over 50's now? I asked about pneumonia one but to young but u can pay for one. I'm the same get fatigue alot feel like I gave a gold coming, then mucas and a slight cough at times it never ending. I get worried having the grandkids etc but we have to live as well! It's a hard one.

So far jab been ok no effects fingers crossed also asked about pneumonia jab but said I'm to young lol I'm 58 but I can pay privately for one will ask the pharmacy about it, my sister had one she was under 60.

Afternoon Susan and everyone Ive still not heard anything from doctor I'm wondering if they have binned it I've been out for a bike ride I'm not sure if you remember when I got the bike I got all the tension in my head neck and lungs felt it that day not sure how long ago it was think I'm forgetting things a lot as well anyway no tension except my hands tingling only done a few miles resting in between will walk my daughter home today as well and see how I feel tomorrow still getting the ear tingling but comes and goes chest is easing as well does anyone get like heavy legs feeling after exercise Gary

Hi Susan, yes we have to live. I've seen my kids recently, one at a time. I haven't seen them together since Xmas. I can't not see people and I don't want to wrap myself in cotton wool. I've put it out of my mind and decided life's a risk no matter what we do. I just keep it as low a risk as possible without it being excessive.

Sounds like your symptoms are similar to mine too.

Take care.

Stuart

Hi everyone 😃

Sorry you've not been well, Lulu, hope you're on the up again. I think these setbacks pick on our weak points (from covid) Mine always affects my stomach as well as the usual cold/flu symptoms. I usually get anxious too, I think because it reminds me of when I had the virus, and I wouldn't want to go through that again

I get the heavy legs Gary, could be to do with energy levels, I get it towards the end of my walk and if I'm feeling tired

Good news on the flu jab, Susan, I think we need all the protection we can get

Hope you get good days soon Stuart, you're definitely due for some

I'm still trying to pace, nearly back to where I was before latest setback

All the best everyone

Morning Gary,

How are you today after your bike ride and walk?

Morning Jim like Joanne said I've got the heavy legs again and tired but I can take it easy today I've got to work out the energy levels may be when the tight chest eases right down I can go further will walk home with my daughter today and hopefully have more energy tomorrow how you getting on has the mucus eased or still the same what about your walking it's really slow for me but I feel better every day Gary

Gary,

The mucus has reduced considerably. Thank you. Its more throat based now.

When the fatigue kicks in I get the cold symptoms, nose blocking and a sore lumpy throat feel totally drained.

I've become lax with the walking but started up again over the past couple of days.

Had the results of my final CT scan that was for circulation, blood vessels etc. Oh and to check for blood clots. All clear.

So of all the tests have come back clear, which is good news.

Just got to get over the fatigue.

That's good news Jim all the tests are all clear you have to try to keep up with the walking that will help you with your symptoms but you know it's hard to find the right level because of the fatigue everything is easing with me but it is so hard to get it right I know not to ride the bike today fatigue is so hard to work out just a walk home with my daughter and some housework for me today looks like we are heading for another lock down as well Gary

Hi Gary, I get the heavy legs. If I go beyond that particular day's unknown energy limit it will hit me as I'm walking home. I slow right down and I know I've done too much.

I'm keeping my walks to just under 20 minutes at the moment and if I go further I make sure I sit on a bench for a while to rest.

Jim my symptoms are very like yours when the fatigue hits me. Sounds identical except I get a cough and breathless feeling too. The lump in the throat is driving me mad. Like I have a dry obstruction that needs swallowing. So strange.

Joanne, thanks for your good wishes 😊

Good morning and good health to everyone today.

Hi Stuart been trying to work out the heavy legs for ages I was getting it in the hands as well its eased there may be it's just a reminder don't push me I've got the chest this morning and the ear tension comes and goes just doing the cleaning in the kitchen and washing up so maybe there is a link to not pushing it hopefully you get a few good days Stuart you deserve a break Gary

I've just read an article on the BBC news about fatigue like I've never experienced before type in bbc news then UK a young girl called natasha she has basically been through the same as us and is still ill but she is getting support now as I was saying we have to work out how to manage the fatigue know when to rest etc I've still not heard anything back from the doctor and it seems like thousands of people are in the same boat because they still don't know how to deal with it what a shambles just goes to show you Google should be our gps Gary

Just read it Gary.

We've all been left to fend for ourselves, which is disgusting.

I echo her comments about the ambulance service too.

On the 5th of April 20:35 I rang for an ambulance, which never arrived. I received a call at 01:10 on the 6th of April and when I spoke to the caller she said my breathing was okay and cancelled the call.

That same day I again called for an ambulance, which turned up. They took my sats said they weren't bad enough to carry. They surmised I was over anxious!

Shameful.

Cheers Gary, I'll take a look. Just been for a walk. No heavy legs today but i did sit on a couple of benches. I await the body reaction now I'm home and sitting down.

Keep it up Gary, you sound like you're soldiering on. Well done.

Just read it Gary. Very interesting and sad. The thing I want to read about now is about someone who is better.

We can hope.

Ps tight chest, mucus and lump in throat just hit me after my walk. Bloody weird.

Totally agree with you Stuart.

I echo yours and Jim's thoughts exactly Stuart I've just taken the dog for a walk only 20 minutes and feel the tight chest and ear tension and neck so it's lingering only 6 months when I look back now Jim I laugh because Im not sure if all the pills and vitamins have had any effect at all and maybe should have just took water and paracetamol like they said in the first place and stayed in bed hibernating might be one for the doctors to look Gary

Gary,

Funnily enough I said something similar the other day.

Think of the money we've collectively spent on pills and potions all to no gain.

I'm like you I don't think any of them helped.

I'm sticking to a decent diet, booze and gentle, short terms of exercise.

Jim, I'm on the booze, decent food, short exercise diet as well. Perhaps it will catch on! 😂

Hi everyone

Just caught up on the posts, seems like all still struggling with symptoms. I started feeling unwell last Thurs, wasn't too bad Friday, Saturday literally sat around all day as so tired, bit better Sunday but Monday, Tuesday pretty awful. Thick/sore throat with lump, chest feels cloggy, tired eyes, headache, inflamed tongue - have to say feeling really worried - this is just not right after over 6 months. Had an emotional couple of days having to clear my mum's flat but genuinely believe these are physical symptoms not emotional symptoms.I just don't know what else we can do - I agree Gary I don't think all the supplements, nose washes and everything else has helped at all other than cost us loads of money!Just listening to Sky News saying why would Government go for herd immunity with long covid so prevalent in young people and people up to age 59 - people are waking up to the long symptoms but still no medical solutions.

Am feeling a bit despondent but maybe am just tired, hopefully will pick up again in next few days.Feel like no-one really understands other than you guys, was trying to tell my brother last couple of days but it was like water off a duck's back he just doesn't get it!

Anyway, thanks for listening and hopefully it is just a blip!

Take care everyone,

Lx

Hi Jim and everyone, I'm really pleased about all your results coming back clear that's great Jim. We must be coming up to the 6 month mark now. I've been reading lots of news stories about people who've gone through similar to us. The article with Natasha said she'd fainted too !! Agree with you and Gary about all the meds we have tried and tested must add up to a fair bit but when you're desparate like we were you try anything that you think might help. Hope you're doing ok Jim

Hi jim that's great news it's just a time thing now for you let's hope that's not long. It's worrying about the virus again wish it would just do one now. 😢😢

It's weird we're all still getting the same after syptoms, my sister keeps getting the tight chest and breathing prob told her she needs to speak with the gp. It's crazy after all this time 😢😢

Thanks Sue and Steph I appreciate your kind words.

I don't think the virus is going anywhere soon seeing how poorly this has been handled from the start.

One thing that is certain there are a lot more people going to suffer with the virus.

Sorry Jim, forgot to say great news about the test results - must be reassuring for you and hoping things continue to improve.

Lx

Thanks Lulu really appreciated.

I'm forever thankful for our little band.

Yep me too Jim - would have been a very lonely time without you guys and the support.

Lx

Hi Susan

It is just relentless, every time you think you are nearly there it hits again. I haven't felt this bad for a long time and started worrying I've caught it again and also I think starting the winter from such a low health baseline is really worrying me in case catch something else as just don't feel have the strength to fight off anything else. Sorry to hear your sister is still suffering - did she get sick same time as us?

Take care,

Lx

Sorry you're still suffering Lulu. I think the emotional stuff affects me as much as the physical. We've had a lot of worry about f-in-law in and out of hospital, and I'm sure my symptoms have been worse

Yes great test results, Jim, must be a relief

Has anyone read Paul Garner update, all about pacing 😃

Hello Lulu. I'm very sorry to hear you're feeling down. We all understand - I'm sure I can speak for everyone on here.

From my perspective I'm amazed you do as much as you do. I cannot imagine having to clear my mum's place right now. I couldn't even attempt it. Even if I was fully fit and healthy I'd find it wearing. I think you should be congratulated for even attempting to do it after being so ill. I wouldn't underestimate the emotional impact either, from my experience stress and excitement hit me pretty hard now and bring on all the usual symptoms.

I think we all want to carry on as normal but there is a price to pay for every cent of energy we spend it seems.

I'm certain we'll get there, all of us, but not as quickly as we would like.

I sincerely hope you feel better tomorrow /today, I'm sure we are all wishing it for you.

Take care.

Stuart

Morning lulu and everyone it's going to be a tough few days for you lulu luckily my sister done my mums flat for us just over five years ago now also it won't help being ill as well but you have to bring your strong side back out to help you we all understand how hard it is when family and friends even work colleagues look at us and think when is he going to stop going on about the bloody thing not that I bother much now occasionally a couple of friends who know I'm not lying ask me even they must think surely you're better now well guess what no I'm not but like all of us wishing we were there and I know I do too but like jim and Stuart said maybe for you time to get the prosecco out had a few beers with my mates last night and Boris popped on the telly in the pub was thinking has he really had it and has he fully recovered hope you're feeling better today lulu it's raining here Gary

I listened to a really interesting podcast about HR monitoring. Although it mostly referred to ME, it could be useful for us. They were saying that you calculate your appropriate HR levels and try to keep within them. If you go above them then you're using energy that you don't have, and that's why you get symptoms.

It was quite technical, and I didn't understand it all, but it was really interesting. Worth a try, but I think I'll be sitting on the sofa a lot and doing snailwalking 😃

Thanks Stuart and everyone for your support I know you all understand and I really appreciate it - as you say maybe I underestimated the task both physically and emotionally - just struggling to know how to deal with this illness now but I think maybe the most helpful thing I can do for next couple of weeks is to lower my expectations of what I can do and rest more and maybe a couple of glasses of Prosecco will perk me up!

Hope everyone else doing well and staying positive I'll bounce back in a day or two!

Lx

Thanks Gary appreciate it, it is so hard you can't keep telling people that you don't feel well but then if you don't they assume you are completely fine and expect you to help clear flats etc!! - some people are a lot more understanding than others. Yep think Boris is looking better but be surprised if he doesn't still have symptoms but he's not going to be telling any of us that in case we think not fit to run country - as if!!

Meeting my Prosecco Tuesday mate on a Wednesday!! Hoping it does the trick and cheers me up!

Hope work is ok and things are generally good with you.

Take care,

Lx

Thanks Jo - I just replied but no idea where it posted! Will keep an eye on HR on watch.

Hope you are ok and doing well.

Lx

Morning lulu you go for it get a few proseccos down you and stuff everyone else I think a few beers actually helps me I relax and a few months ago I remembered the peroni didn't agree with me but now I got to the stage where I think it helps I'm still off work till Monday that's when I start back on seven nights so if I get through that I will know I have improved have a good day you deserve it and enjoy it Gary

Morning guys,

Gary, I'm sure you'll manage your seven nights pal. Keep in the Peroni!

Lulu, It must be incredibly hard to go through that. I categorically know I couldn't manage that. Take it easy and carry on drinking. It definitely helps.

Steph, We're week 25 tomorrow. Who'd have thought we'd still be on here now.

Sue, How do you listen to the podcast?

I'm feeling washed out today. May be it's the weather change.

Morning Jim I've got to the stage now where I'm thinking gotta try and get on with it if it hits me I will be ill but only for a while I've got to manage the two together thats a lot easier than it was two months ago afraid I can't stop working and go to the pub now that would help so if my tight chest comes work through it if it's head and ear tension same sooner or later it will ease but at the moment it still comes back but we all know in time it will change and I'm hoping do one maybe get a phone call from gp before 2022 not holding my breath though enjoy your day Jim hope the weather improves Gary

Evening guys,

I have just received a reply from my MP via one of her case workers.

It's only taken eight weeks for a reply after having numerous requests to resend the original information. Apparently, there's been an unknown problem with the email system.

Right, the reply strangely enough came a couple of days after my respiratory physiotherapy appointment was due.

My MP hopes this has helped the situation. I've replied informing her my appointment was cancelled last week after waiting since June.

I bet I don't get a further reply.

What a total waste of time and effort!

You couldn't make it up Jim I just don't understand it but I still don't understand why my gp hasn't phoned and they got the letter last week they probably just waiting for me to ring them we just been left to get on with it so I will and hopefully it'll get better one day Gary

Boris probably wack a few moles 😅😁

Hi I'm at work out with one of my ladies in car sitting looking out at the sea very relaxing. What podcast is that? Hope all your spirits are up tonight we all have to think of better times in the future! We will all get through this together 💖❤️

Gary,

Your GP needs a rocket pal.

Make a complaint to the practise manager, that'll free up the blockage.

Totally agree we'll have to sort it ourselves.

I changed gps because mine was useless Jim I'm not going to bother about it now if they get in touch with me I will but I don't think they can help me with anything anymore the tension and tight chest probably parectamol and water

Like that Susan your probably right Gary

Podcast about HR monitoring is on youtube or physioforme website

Same as pacing, really, like we're all trying to do 😃

Thanks for the info Joanne. Looks like I need a heart rate monitor. Been looking on Am@zon but no idea what to buy that is accurate and affordable.

Hope everyone is feeling okay today.

Afternoon everyone,

I hope we're all well and tickerty boo.

From Sue's information on the ME heart rate podcast I somehow ended up on youtube watching a video by BMJ.

It's entitled; Long covid, diagnosis management and prognosis.

I'm not really into all these videos etc, however this is via the British Medical Journal and is quite informative.

There were a couple of points I picked up on. Firstly, ace inhibitor blood pressure tablets should be maintained if taken and steroids should be prescribed from the onset.

Well, that's a taster. Watch it.

I've also watched a video via a link from the ME physio website explaining the heart rate monitoring and how to use it.

Pretty simple really when you pick through the bones of it.

Firstly, subtract your age from the maximum heart rate. Then multiply that number by 0.55, which will give you a number. Mines 92.

They recommend not going above 92 heart rate to suppress the onset of fatigue and associated symptoms.

Thoughts on s postcard to.....

Thanks Jim,I'll check it out. The BMJ website has some interesting articles regarding 'long covid'. Shame the GPs don't seem to read it! 😲

My thoughts on a postcard would be;

'Wish we weren't here!'

Stuart, I second that thought pal.

When I listened to the two videos I could have lost my temper.

Paul Garner was scathing of the NHS response to out condition.

Seeing as though I've had a hectic day doing nothing I'm on the red tonight!!!

My exact thoughts too Stuart - this is really all getting to me at the moment. I can start the day with one symptom and end with three different ones - no idea how going to feel one hour to next. Daily Mail had an article about Boris needs to recognise long covid today - read a few comments and many people suggesting all in the mind but not saying that in quite such a pleasant way!! - unbelievable the lack of acknowledgement and sympathy.

I think I feel worse this last week than I have for a long time but think I remember you saying same quite recently?

Thanks for the HR info Jim will work mine out. I feel so tired worse than before anyone else feeling this?

Take care

Lx

Hi Jim

I subtracted 61 (my age) from 136 (my highest HR today) gave me 75 and x 0.55 which gave me 41.25?!! Maths not my strong point maybe? Any ideas please.

L x

Hi Lulu, the maximum heart rate is 220 I think, then subtract your age and then multiply by 0.55

Hi Lulu,

Stuart is spot on.

I know where you've gone wrong.....your not 61!

Lulu, I'm sorry you're having a bad time. I have had a rotten few weeks as I mentioned before. Nowhere near what I was. I just hope it's a blip and a reaction to doing more than I/we should.

I also wake feeling fine and end the day with cough, tight chest, congestion etc etc. Just like you. I presume it's because I've used the day's energy. I am always worse in the evening. Let's hope it's temporary for us 🙂🤞

I'm going to buy a heart rate monitor but I need something convenient and accurate. I've taken my blood pressure several times today, it also monitors my HR and I seem to be fine, totally normal. Thing is my heart seems to be pounding and doesn't feel normal to me. Monitoring it seems to be the way to go.

As for online comments about long covid I've seen terrible ones and I once posted on a comment section elsewhere to let people know about what was happening and got some very dismissive sarcastic comments back. People don't want to accept that there is a third and very nasty angle to cv19.

All the best.

ok thanks Stuart that makes it 87 - think goes higher than that just going upstairs! but will keep an eye on it.

L x

That made me laugh Jim! I used to feel about 21 pre Covid now feel about 91 - its taken its toll!

How you doing?

L x

What are you using to monitor it Lulu? 🙂

Thanks Stuart, today I have been working and been on a couple of calls and sitting all day but as day has gone on I felt breathless, chest feels woolly, can feel it in my lungs and pretty exhausted from not doing anything physically.

I think that is exactly right no-one wants to accept the third angle to C19 but many viruses have prolonged symptoms and cause post viral fatigue like Mumps, Glandular Fever but think it is the breathing and heart issues that sets this apart - it is not just the fatigue it is the ongoing physical symptoms. I think the guy I saw who said they believe there are microscopic changes to lungs, heart which don't show up on scans but cause symptoms is probably right.

Anyway seems we have done all we can and now just hoping we fully recover and need to stay positive.

Lx

Still breathing Lulu.

Thank you for asking.

Apple Watch series 5 has HR monitor and ECG function.

Lx

I'm same age as you, Lulu 😃 I've stopped counting though

I read somewhere that HR should be 50-70% for moderate-intensity exercise. That makes it 79-111 which is a bit more realistic. I'm going to have to walk more slowly though!

I think the change in weather is affecting me, maybe it'll take us a while to adjust? Hope it all improves for us soon

Lulu,

I echo your sentiments wholeheartedly.

Good old Gary made a comment the other day, which really resonated with me.

Gary said and I quote- I've got to the stage now where I'm thinking gotta try and get on with it if it hits me I will be ill but only for a while

Top man!!!

Me too Jo, I even shock myself when I say I'm 61 😱 - but def think age was against us with this, the others that caught it at work were in their 30s/40s seem to have recovered well.

So no hilly walks for me for a while, I do wonder if I did too much right at beginning but was so desperate to get fit again and tbf the specialist said do as much as you can although when I saw him this time and asked how he was as he had been sick with it and in hospital he said he was doing ok BUT "I don't challenge myself like you do" so maybe that is the answer! Reckon he was mid 60s.

Yes don't think the weather helps but I started feeling rough end of last week when it was still pretty warm. Seems there is no rhyme nor reason!!

Take care Jo.

Lx

Ah I love Gary always tells it as it is!! He is just waiting for it "to do one" 😂 Yep hopefully just a blip.

Take care,

Lx

Thanks Lulu.

As you say sometimes there is no rhyme or reason. I think it's that bit that gets me the most. If I knew why, I could deal with it better.

I have just had dinner, I await the usual symptoms to arrive.

Hope you have a good evening.

Stuart pour a large rum young man!

😂😂😂😂

I will be!

Hi Lulu and everyone,

Sorry to hear you've not been feeling well...again. Hope it's a short down and you're on the up soon.

I've had a pretty busy week which is why I haven't been posting for a while.

It was appointment week for the children and my husband had a really bad cold which meant I had to take the reins this week with little help. Think: getting kids ready in the mornings, driving them to school which can take an hour to get to, picking them up, chauffering to appointments and dropping them back at school along with usual chores. I had not done all these things since being unwell. I was so busy with it I nearly missed my own respiratory appt with a consultant on Tuesday. I remembered literally a couple of hours before that it was that day and was so relieved I hadn't missed the time! So sorry I didn't ask for anyone's questions for the consultant there was no time to post on here, but I can tell you what she said.

She asked me to tell her the whole story so I did but said that I couldn't quite fit in 6 months worth of story! Then she asked what of the symptoms I'm left with and I said I have muscle aches, GI issues, heart palpitations and difficulty taking deep breaths at times. She listened to my chest, made me do some exercise while checking HR and oxygen levels. She said from what she can see there's nothing to worry about and that has been the same for nearly all long covid patients they've seen who they've done tests on. All test have been normal. She said she thinks worth doing some further tests just for reassurance. So I'm doing blood tests to check heart function and for any autoimmune problem. She's referring me to physio because she thinks I have breathing dysfunction and I will be doing 24hr ecg. She also asked me how I feel emotionally and if I have anxiety. I told her I think everyone has anxiety nowadays! She said to self refer for cbt if I feel I need by going on iapt.

That was that.

Think I'm suprised at how much I'm managing this week, getting up around 6:30 and being on the go until midnight. Have the muscle aches, eyes are heavy and feel exhausted but somehow managing to get most things done (cleaning and laundry have been on the backburner this week, i just couldn't!).

Lulu, you were saying you think those in their 30s and 40s have recovered quicker, I've just turned 37 and am still chatting to you guys on here 😉

Curious to know if the physio is going to help and how long I'll have to wait for it!

Oh also she said results from endoscopy were normal and just to take lanzoprazole again if i need for reflux.

Think that's about a weeks worth of comment 🙂

Hope you're all ok this evening.

Good news Dane.

I'm pleased for you.

Evening everyone that's really interesting Jim if the maximum heart rate is 220 my age 59 so I ended up with 87.45 now I think I have done that correctly Stuarts thoughts on the post card I echo too unfortunately lulu had the tiredness comes and goes I get like heavy legs but I work through it I'm not taking anything no more only zinc for my immune system not sure if it will help me in the future or not seems like your not having a good time lulu hope you pick up soon I've felt OK just tight chest and ear tension can't shake them off should go on the red like jim I'm indoors and don't have any alcohol so early night for me today the weather has changed Joanne I'm going to try the bike tomorrow I need to test myself before I go back to work it's certainly drained all of us from time to time I know I'm getting somewhere though over the bloody line would be good though enjoy the rest of your evening guys and girls Gary

Hi dane well done you dealing with all you have this week just chilling now might have to get the calculator out again used to be quite good at maths enjoy your evening you deserve it Gary

Hi Dane

Great to hear from you. Amazing what you are coping with but the thing is with kids you don't get a lot of choice but great you are managing, bet you are sleeping well!! So reassuring for you from your consultant too.

Interesting the tests all seem to come back clear for everyone, think we have mostly found the same only thing my respiratory guy found was the small patch of pneumonia in my right lung but was only small. I reckon it must be the immune system still overreacting causing all these ongoing symptoms - it feels like it as seem super sensitive to everything. On my consultants letter he has mentioned allergic rhinitis and also the reflux - didn't have either before!!

Yes, you have just blown my age theory right out the water 😂😂 and tbh a lot of the longcovid support groups have younger people still struggling months later.

Interesting about the Lansoprazole I wonder if you can just take it as and when you feel symptoms or throat sore - ENT guy who prescribed it told me to try stopping it, respiratory guy told me important to take it as the acid damages the throat and voice box - now who do I listen to?!

Anyway, great you are doing so well and hope husband's cold clears up quickly.

Lx

Thanks Gary, glad you are doing well. Had a couple of glasses of Prosecco yesterday felt like a new woman!! Lasted about two hours 🙄

Hope the biking goes well tomorrow.

Take care,

Lx

I actually think the alcohol has been helpful over the last few days lulu and a couple of months ago I didn't fancy drinking not had any today though so might be a long night we will get there lulu we just got to keep getting back up again when it kicks our back side Gary

Gary my pal you're totally on the money.

We've just got to keep going.

Oh and a glass or three helps.

Too right Jim might have a couple the weekend if I knew it would wash it away I would get absolutely plastered 😂 Jim think it might be better than all them pills I swallowed Gary

Thanks Gary and Jim.

This HR monitoring is interesting, maybe I missed something, but are you supposed to exercise to get your highest HR?

Hey Lulu, I am getting to sleep with little trouble that's for sure!

Consultant did stress there's a lot they don't understand about us long covids, and we know that given our still unexplained symptoms. Same with me, never had reflux before.

Nothing better then having 2 conflicting pieces of advice though, gosh how do you choose between ent guy and respiratory specialist. I remember going round in circles when being advised what to eat to help the reflux and weight gain, naturopath said no dairy and GP said full fat yogurts 😀

Sorry to bust your theory, if it helps I sometimes feel I've aged about 20 years after being through all this!

Dane,

I've calculated your age and you should try not to elevate your heart rate above 100 beats per minute.

Jim.

Oh thanks Jim!

That's very helpful 👍

Hi Dane

Good to hear from you, gosh you've had a busy week, well done for surviving it. Great test results too 😃

Yes, some of us have been working out what our max HR levels should be. There's a podcast on physio for me website about HR monitoring. It's aimed at people with ME but could be useful for us. It's to do with pacing, and they're saying if you go above your max HR level for your age, you could get symptoms to show you've overdone it

As Lulu says though, covid is different, and doesn't follow any rules. Maybe we should just get on with it(thanks Gary) and have the odd rum (thanks Stuart)

I'm sure I felt better a few weeks ago when I was doing more. Or is this the next stage in the everlasting saga. Who knows?

Enjoy your day everyone

Happy resting/drinking/cycling...

whatever 😃

I have an oximeter which does heart rate and oxygen level I do mine once a day. Hope your all well today weather is rubbish today really feels like autumn ☔☔☔

Sue,

How are you going after your flu jab?

Hi jim I'm OK no problems with having it done, I would advise you all to get it done ❤️

On your recommendation Sue I'll book one.

Thank you.

Great to hear from you Dane and congratulations on getting through your busy week. I can't imagine doing so much. Thanks for all your respiratory info too, it's always good to get that info, especially for those of us unable to see anyone just yet.

Hope you have a good evening.

Stuart

Evening Joanne, I was definitely better weeks ago. I had more energy and felt stronger. That was during the hot weather. I do wonder if the weather is affecting us. I'm very cold tonight and feel like hibernating. Enjoy the rum, the warming effect is most pleasing 😉

Morning guys and girls I had a mixed day yesterday only managed a couple of miles on the bike weather didn't help also got some head tension I'm afraid I think that the head and ear tension are linked to the tight chest might be wrong but it seems to come and go both are easing but very slowly heavy legs again this morning but besides my left ear tension all good went to the pub with my mates very strange people were trying to do what's right but forgetting to put masks on when leaving their seats either for a cigarette or toilet bell going at 9 o'clock long time since I heard one of those being rung I hope everyone is well Gary

Morning Gary,

You've been missed pal.

I don't think I would dare going for a beer being honest, so good on you.

Going to the pub is something I really miss. Up here in the little village I live in the local is the heart and soul of the area.

This may cause controversy but I preferred pubs when there were strict hours. It was a lot better.

An old pal who's a couple or three years older than me used to say when we first started drinking was if you can't drink enough between 9 and 11 your not drinking fast enough.

As for how I an today. It's strange but I feel alright for a change.

Have a good day my pal.

Hello there my friend,

May I ask you what type of vitamins are you taking, and at what dosage? Vitamins will not work unless taken at the proper dosage, and of course you already know this.

We've had quite a few people in my family catch C19, as well. Thank you.

Thomas

Good to hear it Jim that you're feeling OK your pal might be right as well but I'm a slow drinker compared to my mates but that may have something to do with the strength of the drink and Im quite happy to stop when I've had my quoter sometimes I forget but I usually make it home fine enjoy your day too Jim sort of a autumn feeling down here windy and sunny Gary

Guys,

There's an article in the Daily Mail, which says the Government have recognised long covid.

The article relates to Sage suggesting everyone over 45 should shield.

It's worth a read.

Cheers Jim will have a look Gary

Read both of them wish they would have shielded us start of march might not feel like we do now I noticed they mentioned hair loss as a symptom that would be the next one coming then not had that yet 😅even though they may recognise long covid now Jim I'm not so sure how they can help us and even if they are going to get their acts together to try they are probably going to have their hands full with the next lot maybe they will give them something a bit stronger than paracetamol and water still not convinced anything works against it maybe one or two of the experts has an idea think we've gotta ride it out mate they might even throw the blood tests out of the window don't remember anyone having anything show up on any of them hopefully the strength of the virus has weekened otherwise its going to be a long winter for some people Gary

I know what you mean Gary about the shielding. If I hadn't caught it at the end of March work would have offered me shielding from April as I take BP tablets.

They're the breaks hey!

I can't see the majority doing it.

The problem lies with openings schools and universities, as the majority of school and college live at home. Obviously it spreads round schools and then home.

Your right the medical professionals have no idea and its worth watching the youtube video titled; long covid daiagnosis management prognosis. It's quite enlightening.

Regarding blood tests, CT scans, ECG's, cardigrams all have come back as normal. I know Lulu had a slight small area on her lung and I've got an extra heartbeat every now and again but I had that before.

Oh Stuart had a very low vitamin D count on a blood test. But other than that nothing.

However, if you look on the BMJ website they list tests, which should be considered for each degree of severity of illness.

None of us have been looked after how we should have nor what they now recommend. I can't remember anyone on the NHS having a CT scan.

Well that's enough bleating by me.

I'm off to watch the bike racing.

Thanks Stuart, I'll have to get a bottle of rum, certainly need it in this cold weather. Do you drink it neat? I used to love rum&coke 😃

I don't think I'd do well in a pub, Gary, I'd forget the rules, I've only just got used to remembering what to do in shops

Thanks for the info, Jim, I'll have a look at that, glad you're feeling better, hope it lasts

Thanks for update on jab, Susan, sounds tempting

Hope you're feeling better, Lulu, my cold symptoms seem a bit better(shouldn't have said that, they'll be back)As well as that I've mainly got the tingly arms/legs

I'm trying to do things more slowly when I remember, not sure if it's helping

Enjoy your weekend everyone 😃

Has anyone looked at the NHS website, your covid recovery.

It's worth reading and a shame no one in the NHS follows the policy.

Hi Thomas

I only take Nutri-immunoblast which is a high dose multi vitamin in the winter. I am not big into taking vitamin supplements as I eat a healthy balanced diet and when blood tests came back I was not showing any deficiencies.

Sorry to hear you have family members who have had C19 - hope they are recovering well.

Lx

Hi Jim and everyone

I'll take a read Jim, but as Gary said bit late for us but hopefully those who are older and more vulnerable are taking things seriously and limiting their risk but it is impossible unless you shut yourself away completely.

I met a colleague for lunch today she was sick at same time as me and three others in our office but only for a couple of weeks and thought it probably wasn't Covid as very mild symptoms sore throat etc. no lung/breathing issues, not seen her since March she was very tearful as still feels unwell - sore throat and lump in throat most evenings, tinnitus, ear ache, head cold, aching eyes , hyper allergic with terrible hayfever all summer and super sensitive to everything including her pets which she has had for years with no problems before - she just kept saying I feel so poorly and it comes and goes - and this was an extremely mild case and she says still not sure I had it but it seems pretty conclusive to me - she is in an even worse situation than us as no one has even acknowledged she has had it - just shows even the very mild cases can suffer for months too.

Anyway hope everyone is doing ok, I am feeling much better than earlier in the week have a bit of a tight chest and mucus (are you still taking Mucodyne Jim and how is your mucus?!). I think mine is worse if I don't walk but it is a balancing act - if I don't do a long hilly walk I have more energy but the mucus builds, if I walk the mucus seems to shift but I use all my energy!!

Sorry your bike ride wasn't as good as you hoped Gary but two miles is still good and glad you had a good night out with your mates.

Enjoy your evening everyone and have a large rum, gin, whisky, Prosecco or whatever takes the edge of things!

Lx

Ok I understand. Well, I hope you feel better very soon. Good luck with finding something that works for you to ease your suffering and pain. Take care.

Hi Lulu,

I'm down to one tablet carbonistiene three times a day of my own volition.

My mucus production has reduced and now it's in my throat. It may be a coincidence but I've been prescribed and use a steroid inhaler, which could be the reason. My consultant did say it may well dry the mucus.

Over the past three days I've noticed the lump in my throat has become more prevalent, which is annoying.

The heart rate plot has moved me to be more sedentary, which I struggle to fathom. I'm trying to do a couple of walks no longer than 20 minutes and I haven't had a crash since. Well, not yet.

I'm back working on Friday but from home on reduced hours. God knows how I'll cope with late afternoons and nights but I've got to try.

Oh on the NHS "yourcovidrecovery" it says if your symptoms persist over 12 months it will be classed as a disability.

Hi Jim and everyone

Me too more mucus in the nose and throat these days - and I regularly get the lump feeling in throat but if you google it says common with reflux - I am still not convinced it is reflux but think the mucus is caused by the inflammation.

I think you have done well with pacing yourself Jim, it is sensible, I am rubbish at it and always do too much and like last week take a big dip. I have a busy week again this week but am going to try and rest in between.

Such good news about work Jim, it is a huge step in right direction back to normality and may be tough but from where you were a couple of months ago a huge achievement. I stayed on reduced hours for 8 weeks in the end and it really helped.

Seems we are on a long slow recovery, just a matter of time for all of us and I reckon if we play our cards right we will be fine within the year. The thing I have to remind myself is that I didn't feel great every day before this happened even though was fit and healthy (as far as I know) so not likely I will after!! I equate it to one of the Gov graphs where there are peaks and troughs but overall going in right direction.

Hope everyone has had a good weekend, and recharged the batteries for the week ahead.

Lx

Hi Lulu,Jim, Gary and Everyone,

Afraid all down hill for me.

I've caught a simple cold from my son 2 weeks ago. Been dreadful. It's now progressed down into my chest which as you all know is still super tight and of course i still have post covid cough etc...Last few days I literally don't know what to do with myself. The level of inflammation is insane. My throat is like sandpaper and I'm actually scared to cough because the noise imaging is frankly disturbing it's so horrific and feel like I'm injuring myself from coughing so hard.

Getting the mucous up is hard and feel like my tubes are sticking together and on fire. A very bad bronchitis on top of post covid brochial symptoms...I do recommend you all be careful even catching normal winter bugs. I'm in nightmare. Have just emailed my specialist as coughing up specks of blood and really anxious to be honest now. It's def not covid but the combination of post Covid symptoms plus a new virus is overwhelming me. Feel physically awful but also of course mentally dreadful with all the back history of the last 6 months still in the rear view. Feel really distressed.

Sorry for the negative rant but I don’t know how much more of this year I can take.

Oh Res,

I'm so sorry to hear your news and no need to apologise either.

A trip to A&E sounds in order to me.

I hope your well asap.

Hugs.

Yup I'm 37 too!

Glad you are making headways Dane.

So sorry to hear this Res, just what you didn't need on top of everything else you have been through last six months.You must need antibiotics at the very least - do you have any you can start until you hear back from specialist? As Jim said, it would be a good idea to go to A&E and get checked out it is better sooner rather than later - it's so easy to put it off keep thinking things will improve on their own but you know you are starting from a physically low ebb so don't want to take any chances and sounds like you are feeling in a bad way. You can explain the history and why you are so worried and am sure they will check you out and give you the right medication.

Keep us posted and will be thinking of you. Sending you a big hug 🤗

Lx

Thanks Lulu,

The GP has given me amoxicillin but it's getting worse not better which leads me to think the main issue is inflammation on top of inflammation.

Then again...had so many antibiotics this year am not certain amoxicillin will any longer touch the sides😂.

Will hold on till tomoz and hopefully can speak to specialist.

What a year!😱

Thanks Jim.

Kind of at my wits end at this point.

Think will hold off on A&E tonight and see if can speak to specialist tomoz. Perhaps even an inhaler of some kind would help.

Saw my dad on Friday across the garden, who has industrial asthma and COPD..even he was commenting on how bad my cough is, which is saying something coming from him.

Really hope it turns a corner soon.

Thanks for your good wishes

Yes am sure he will be in touch in morning and advise you what to do.

Take care Res, hope you get a good night's sleep and feel better in the morning.

Thinking of you.

Lx

Hi Res and everyone, sorry to hear you've been poorly. I echo Jim and Lulu about a trip to A&E but only you know best. My daughter has a cold so I'm being extra careful not to catch it. My symptoms now are like a never ending cold so don't fancy catching another one. Jim I hope work goes ok and reduced hours are the way to go for now , just listen to your body. Lulu hope you have a better week. It's going to be harder to manage the symptoms now that we can't escape to sunbathe in the garden but hopefully with each day we will all feel a bit better.

Really sorry you're feeling so rough, Res, hope you get some help today from your specialist, and you start to feel better. All the best to you, you've been through so much

Good luck with work this week, Jim, slow and steady does it, you'll get there

I'm still trying to pace, but the slow walking doesn't suit me! I've gone back to normal walking, keeping an eye on my HR

Have a good day everyone 😃

Hi res I don't know what to say really seems like your going through an awful time to tell you the truth I really thought we would all be through this and getting on with our lives age's ago now I realise not as easy as I thought I remember you saying a little while ago you was worried about the winter coming and now I realise why I hope you improve soon I've never been one to worry about winter because like I said before I'm never ill might have to have a rethink now res hope you get the blood problem sorted soon Gary

Gary,

I'm very much the same. Illness, weather, seasons have never previously crossed my mind. Barring my first job, which was office bound I've always been out and about.

This year I've changed and seeing Sue hasn't had any bad reactions to the flu jab I'll be having one.

I can understand that Jim and I don't blame you but for some reason I don't know why but I think it will not agree with me and like I said before I've never had to worry about a cold or flu because I've just got on with it I am actually thinking about getting one but I may wait a few weeks as I'm still hoping my flu like symptoms might do one gary

Thanks Gary, I'm super down about it to be honest. Life post-covid just feels like such an uphill struggle . Becoming harder and harder to pull myself up mentally. My body is just so depleted and feel very down.

Specialist wants to put me on a steroid that my father, who has COPD, is on. Has quite a lot of side effects but if it gives me some quality of life may be worth it.

Really hope we all improve in time.

Stay safe Gary.

Thanks Joanne.

I really wish I had happier news. Been such a bad month healthwise...One thing after another. Body feels totally exhausted.

I'm trying to pace too. It's frustrating but necessary I think. Hope rest of your week goes well!

Hi res been out working at the moment weather is not good for working in hammering down fully understand how things are getting you down and it is an uphill struggle you gotta keep fighting though res it will get easier in time hopefully the steroids work and give you relief I've stopped taking medication now to tell you the truth I'm not sure if it works anyway dr hillary was on tv this morning saying drink plenty of water and take paracetamol think it's a waste of time who knows maybe in time they will find something that work's hope you pick up soon res take care Gary

Morning,

There's an interesting article on the Daily Mail website where a series of Doctor's have described their plight with long covid.

The majority sounds much worse than us, bless them.

Don't bother reading adjacent posts, as the none believers seem to have been up early this morning.

Hope everyone is well and has a good day.

Jim.

Morning Jim I will have a look at daily mail I was reading a Google article about a non believer who went to tenerife saying its all a load of blah blah blah now in Watford General only 29 may be woke a few people up had a bit of a struggle last night climed a lot of stairs with a couple of Jack's needed a breather after that hope you're feeling good mate Gary

Hi Res

Hope steroids help you and you get some relief soon

I've had the return of some of my earlier symptoms, blocked nose, tight chest etc etc. I've started on the honey drinks and trying to remember what worked last time. It will get better, it's just going to take time, we have to keep positive

There's a programme on radio 4 about long covid, not sure what it's about, could be what we've already heard

Take care everyone

Very interesting article Jim just goes to show you even the professionals are struggling with it as well 60 thousand they reckon now with long covid still don't think matt Hancock and even Boris have had it or if so perhaps they have better parectamol and water than Dr hillary recommended hope you are having a good day Gary

Afternoon Joanne you say you're getting symptoms returning did the tight chest go before and come back can't seem to get the tight chest to go even though I feel it is easing Gary

Having watched the lunchtime news 60,000 suffering are the reported cases over 3 months suffering.

They are estimating alot more. Possibly running into hundreds of thousands.

Just goes to show you Jim it's going to be even worse for the ones who get it now unless the virus is not as strong now even if they know more than before the so called experts what are they going to treat them with if they had something surely they would be putting it forward not parectamol and water and a vaccine isn't showing up yet mind you they still haven't a clue with the testing yet and that chaos with the students saw the sign that said please help send beer that will be better than paracetamol gary

Hi Gary

I don't think the tight chest went, but I think my breathing is not as good and seem more congested. Also had tingly/sore legs back which I think may be nerve pain.

Walking seems to help with all this, so long as I don't overdo it. It's like juggling!

Gary,

It's been an utter cluster f..k from start upto now.

From not closing the borders, starting lockdown late, testing, track and trace. Everything has been a debacle of epic proportions.

We are the laughing stock of the world running parallel with the US by the utter disregard for the health and safety of our citizens.

I can see alot more people who are going to suffer as we have and are doing.

The Government have blood on their hands.

End of rant.

Hi res very sorry and sad to hear this pls keep us posted on how u are doing. Sending hugs 💖

Hi jim and Gary on news a minute ago they r saying long term effect of covid is heart rate prob , liver and kidney problems dosnt sound optimistic.

How are you going Sue? Any ill effects from the jab?

Thanks Susan, I will do. Really depressed. x

Hi jim not so far it's been over 2 weeks now! Have u had yours yet jim.

Yes my mum was telling me about that but I wasn't home to listen.

Sorry about the symptoms. Honey drinks are soothing. On them myself.

Hi res I bet you are depressed dreading getting any cold virus this winter as we don't know how were going to cope with them. Steroids do buck you up abit more let's hope you recover quickly and we're all here to listen 💖

You can see how young people have been spreading covid due to being irresponsible.

My surgery are supposedly ringing me to arrange one.

I'm not holding my breath.

Evening Susan and everyone

I don't watch the news, what else did they say? It doesn't sound very positive. The heart thing has certainly made me think.

My heart has been pumping like mad these last few days. It has got worse these last weeks in combination with my breathlessness and fatigue increasing. I have two HR monitors now and they can't both be wrong when they show the same HR. I'm in the nineties at rest which I'm sure isn't right. I spoke to my doc who seems to think there is no problem despite me being tachycardic. He just doesn't listen or seem to have put two and two together when I told him my story. I feel totally ignored and I can't explain why he is trying to fob me off.

All of that of course makes the HR go up!

Res, I'm very sorry to hear you're unwell. Without you we wouldn't have this forum. I hope you improve very quickly.

It's easy at the moment to start to feel a bit down, as it's all gone on so long but we have to try and be positive. I just hope our bodies are going through a period of repair which will explain this bad period I and everyone else seems to be experiencing.

Hopefully there is going to be some recognition soon for all of us.

Take care everyone.

S x

Hi Stuart I've got a oximeter but oxygen levels are usually between 96 and 99 my hr varys from 62 to 90 deoending on what I've been doing.at rest it's normally between 60 to 75. I do think we shoukd all be checked at 6 mth mark to see how our bodies have changed etc.

Hi Jim no don't hold your breath we need as much as we can at mo 😂😂😒😒

Res, I'm so sorry to hear you're unwell again! Sounds awful.

Trying to stay positive is so difficult when you feel physically rotten, but you must. There will be better days ahead, you're young (37 years young like me 🙂) you should make a full recovery. I hope the specialist will give you something that will help you feel better quick.

Let us know how you're feeling.

Hi Susan, I agree with you - we should be checked over again. My doc looks at blood tests from April and thinks nothing has changed when I know I'm feeling worse.

I wish my HR levels were as good as yours, yesterday evening they were in the low hundreds just sitting doing nothing. Hoping for a better day for all of us. Best wishes.

I'm sorry you're feeling alone with this Stuart.

Think the doctors in general are so new to this themselves and our stories are so long and complex by this point that they don't really know what to do.

Even when I hear myself trying to explain things I feel like I must sound quite confusing.

i'm feeling a little better today but oxygen went down a bit and breathing was bit troubled.

That's sorted itself a bit since I took a reliever inhaler...I am more and more certain that covid has left me with some kind of asthma.

Really hope we all soon get the help we need as asking so often is starting to feel shaming.

Thanks Dane,

I'm trying to keep my chin up just feel like reserves are low..Makes me feel for my poor dad. He has COPD and just trying to remind myself that this is the poor guys daily experience of life for years. Bloody awful.

Thanks Res, I'm glad you're feeling a bit better, I feel terrible for you. Interesting what you say about asthma, I feel very similar. A ventolin inhaler definitely improves my peak flow readings and I find myself using it more and more now especially after eating. The frustrating thing is that the tests aren't being run to test us for asthma or copd.

I'm the same with explaining my situation to the doc. I get quite tongue tied and frustrated especially as they seem to be in such a rush.

With all the increase in publicity about long covid let's hope our situations change.

Maybe it's nonsense but I feel like the virus is still present inside me, hiding, and attacking something new every few weeks. I remember reading about a patient in China way back at the beginning of all this that couldn't shift the illness. It was commented that the virus and body had reached a kind of mutual agreement and it stayed there as an unwelcome visitor. He was cured by injecting blood serum of a person who had recovered. That story has stuck with me for months.

Anyway, let's hope for brighter days soon. Hope you continue to improve Res.

All the best to everyone.

Afternoon Stuart,

Yes, my PF goes up after using my reliever inhaler. I mentioned to my consultant and he said it would as it opens up the airways.

I've heard today he's referred me back into the NHS under him. Thank God.

This morning I spoke to my GP and it's so much easier to speak to someone who's followed you through the illness. They are fully au fait with the chronological order of symptoms, medications, decisions made and why. Obviously this eliminates the need of repartition everytime you call etc.

Thankfully my current GP took personal responsibility for my care when she saw my notes and that I hadn't had certain tests after eight weeks.

What should happen is once a patient has been identified as a covid sufferer a GP should be allocated and they should see the patients care through to fruition.

Hi Jim, my problem has been I have never had one gp in control of my situation. I changed address and had to sign up to a new place a couple of months back so I'm starting all over again. I thought my last place was bad but the new one has made me realise how good the last place was in comparison. I called to see if my old surgery would take me back but they said they can't as my post code is outside of their catchment area. I have lost access to a very helpful respiratory nurse. The new place seems amateurish.

You're right about identifying someone as a covid sufferer but my gp has said "IF you had covid" as if he is doubting it, and "if you have Long Covid I won't be able to help you."

Frustrating feeling of not being taken seriously. I'm think I'm going to have to spend what little money I have left to go private. Shocking really.

Stuart,

I'm disgusted in what the GP has said to you but not surprised. We've discussed this before and being honest I've had similar conversations with other GP's. Thankfully my current GP is a diamond.

Good afternoon everyone I've just had a phone call from Sarah she is the speech and language therapist team leader she said have I heard anything from my doctor and obviously I have not she rings me about every four weeks as she speaks to a lot of long covid people she has all my notes etc she said everything is taking a lot longer than usual but they will be in touch I explained that is fine because I'm basically getting on with it and trying to pace myself I had a physical night last night and had to exert myself more in other words I done some work so I rested today will walk home with my daughter after work and see how tonight goes Im feeling okay bit tight chest and ear tension which is normal at the moment hopefully these gps start to get you some help Stuart soon Sarah did say keep pacing and try to get rest as well but also if you need the gp ring them not to get confused with the symptoms because I told her I've got a heavy left hand it could be something else Gary ps hope you are all feeling better today

Hi Stuart record your HR then you have evidence to show the gp as over 100 resting is not good. Best wishes to you keep pestering them.

Hi Res and everyone

How are you feeling now Res? Hopefully feeling a bit better than over the weekend. I really hope the steroids help you. It is so hard to stay positive when you have felt so unwell for so long - I think we all understand that feeling.

Sounds like everyone is struggling at the moment. I listened to the longcovid programme on Radio 4 yesterday - interesting but sadly no real advice or treatment but at least is has been recognised and is being researched.

Sorry you are not getting any help from GP Stuart - it is so disheartening and as you say it is such a long story to explain the last six months and I always have the feeling GPs think it is all in the head and you are making it up - if only. I've given up on mine but sometimes feel maybe should phone to say I am still suffering symptoms so at least I am logged as a longcovid case rather than they assume you are recovered and fine.

Take care everyone, sending positive energy.

Lx

Stuart you can always switch to another gp practice within your catchment area. I had no GP back in March when I was sick because we'd also moved house. We really weren't sure where to go so I registered myself in one practice and husband and kids at another so we could compare. I remember talking to 1 GP at my new place who happily told me there's nothing to do to help me! Eventually I discovered another GP at same surgery who was much more helpful (there was also persistent nagging on my part!) she got me referred to post covid clinic and that has been very helpful. We really should all be with a post covid clinic now.

Hi Lulu,

Chest is still tight and feeling pretty crappy. Burst into tears in the car today on way home from Doc. Just feel this is all going on forever and is really getting to me. Don't see much light at the end of the tunnel with winter approaching as even in a good year I will usually have bronchitis a couple times and a tonsillitis. Always been unlucky with upper respiratory stuff, so kinda worried given that I won't really have the opportunity to recover properly unless I hide away from everyone...And even then, with a kid at primary school that's not very realistic.

Need to try and keep it in the day though or am going to feel worse.

You should def let your doctor know that you have long covid. Be counted...They are trying not to count all these numbers i am pretty sure so don't make it easy for them!😂

Evening. Thanks for all your words of support everyone , I appreciate all of it 😊

None of us should be in this situation with GPs, we have enough to deal with without extra stress from them.

I mentioned post covid clinics to my doc and he knew nothing of their existence.

Anyway enough of that, it's so exasperating 🤐😤😤😤

Res, I truly hope you get well soon.

I think we all need a bit of positive news for a change. Let's hope.

Take care everyone and thanks again.

I am not surprised you burst into tears Res, you have been through so much and I reckon we all feel close to the edge, it has just been so relentless over the last few months - I think we are all worried as we are going into winter from such a low ebb and still with symptoms. I am literally trying to just take a day at a time and trying not to stress myself out with worry about getting sick again whether it be a cold, flu or whatever but appreciate it easier said than done and some days am not succeeding.

Hopefully as your cold improves things will pick up again and things will seem a little less daunting and overwhelming. Will be thinking of you and let us know how you are feeling over next couple of days.

Take care,

Lx

My 1st all nighter at work so far so good, I've been here since 3 today til 9am tomoz. Hope the clients let me sleep.

Amazing, that is a long shift! I really hope it goes well for you tonight.

How are you feeling generally? I have been feeling really rubbish today and really last couple of weeks on and off with a bad sore throat and generally feel unwell - probably overdone it yet again - just can't work out why still suffering a sore throat after nearly 7 months it doesn't seem possible. Will phone GP tomorrow see what he says but not holding out much hope!

Take care, let us know how you get on.

Lx

Hi lulu I'm the same as you feel crap some days like a cold coming, glands up in throut and feel tired, other days I'm fine it's crazy.

I'm the same, Lulu and Susan

really up and down these last couple of weeks, and not back to where I was before. It must be fatigue with me, I've been watching some videos about it to help me with the pacing, as I'm so useless at it !

Hope you're feeling better Res, and you're having better luck with your doctor, Stuart

Can't believe this is still going on after so long. Must keep positive 😃

Hi Joanne, I totally get you about the pacing. When I have moments of feeling more 'normal' I forget to be careful and start acting as I usually would. It's important to rest even when feeling well it seems.

Thanks for your words about the doc. I live in hope of us all being understood by our docs one day.

Some positive news, I purchased a fitwatch thing and I've been able to monitor my heart rate constantly over the last few days via a graph on an app. I've seen my resting heart rate get better progressively which has really helped me feel more positive. I am always a bit worried about reporting positive news as we all know what tends to happen, but I'll take the risk 😁

Hope you get some better days soon, and that applies to everyone.

All the best.

Hi Jo and everyone!

I think it is definitely pacing which helps but it is so hard to do! I only work on Thurs/Fri so spend Mon-Weds gallivanting around cramming all my social events into three days and then crash and burn on a Thurs/Fri, pick up a bit Sat/Sun and then do exactly the same the following week 😂 Going back some months I remember always being ill after Prosecco Tuesday - I should have worked it out!

Rang GP this morning, as useless as ever, asked me what medication I was on when I said Mucodyne she asked me what it was for? Ermm.. the clue is in the name and actually you prescribed it 🙄 Anyway I logged the whole 7 month drama and said I would like it recorded on my notes as Covid 19 as had a clinical diagnosis as no tests available - needless to say she wouldn't do that only suspected Covid 19. Well at least it is recorded if any treatment or help becomes available in future and I also asked about post Covid hubs - "what's that?"!! didn't have a clue what I was talking about. No kidding we could all do a much better job caring for Covid patients than the average GP (I do know there have been a couple of exceptions).

Stuart great news about the Fitbit - just don't get obsessed with it!! I was at one point but calmed down now but it is good to be able to check if you feel a bit weird/fluttery any time.

Anyway, have a great weekend everyone,

Lx

Hi everyone 😃

Yes Lulu, it seems pacing must be the answer, if we can manage it. I'm trying to recognise the signs that I'm going to crash, and I'll try not to ignore it, and not try to quickly finish what I'm doing

That's great news on HR, Stuart, really pleased for you. It was such a relief when my resting one came down, just need to work on the walking up slopes one

These videos I've watched about fatigue are really good. It makes you look at it in a different way, after all we are convalescing, and we should look after ourselves and not feel guilty about not doing things. It also mentions mental and emotional stress being as tiring as the physical, and mentions how exhausting it can be explaining to people that we may look better, but we're not. Lots of useful information, they're- Advanced Wellbeing Research Fatigue videos

Enjoy your weekends 😃

Afternoon guys,

Woke up feeling rough today. Feeling hot one minute then cold the next. Guts churning. Ive had tingling down my arms and legs too, which I haven't had for weeks, if not months.

The world these days is very strange.

At least the weather is consistent with autumn. Foggy, cold and drizzling. Boo.

Morning Lulu and everyone. It sounds like you have the same gp as me! 🙄😂We shouldn't have to wrestle with these people, it's quite bizarre.

Thanks for the advice re the fitbit. I have been a bit obsessed these first few days and I think it's important not to focus constantly on HR. I have had a pretty bad couple of weeks and seem to have energy levels at zero so I have been using it to make sure I rest. Advice taken 👍

Joanne, you're right, we are convalescing. If we had a recognised illness with a definite pattern, diagnosis and treatment it would be so much easier. I just can't understand how after all this time I can feel worse than I did 2 months ago. I'm guessing it's because I did too much when I had better days. Thanks for the tip re the videos.

Hope you're all having a good day. Take care everyone.

Hi Jim

Sorry to hear that! You just never know what you are going to get from one day to next or from one hour to next some days! I am feeling very nasally - the consultant has put allergic rhinitis on letter and seems it is triggered by change in temperature - not very helpful as in this country we can drop 20 degrees up or down in a week!

Good to see Trump's medical entourage seem more switched on than our GPs!! - makes you realise how they know how serious this virus is when you see a team of 12/14 doctors looking after one patient - albeit the President!

Hope you perk up again tomorrow, am sure you will.

Lx

Thanks Lulu your words are really appreciated.

I now know what has triggered it. Stress.

Hi Stuart,

Ha! I knew you would get obsessed it's hard not too! I sometimes wear an ordinary watch and it is such a relief - it's like getting a random day off work!

Hope the HR has settled down generally, it is probably quite variable in normal times but we wouldn't have been so aware pre March. I had no idea what my HR was before this nightmare started.

Interesting about feeling worse than 2 months ago - just throwing this out there but do you think our expectations are higher now as we are able to do more or do you think you actually feel worse. Am not sure what the answer is btw but I question this myself. I definitely think the warmer weather helped me. I am just picking up again after a rough couple of weeks so am determined not to overdo it this coming week!

Take care,

Lx

In desperation have just tried the Neilmed nasal rinse - will report back if any improvements but it wasn't unpleasant at all and easy to use. Had the mucus stuck in back of nose and throat so felt had little to lose! Seeing ENT consultant again on 13th so at least I can honestly tell him I have tried it!

Lx

Hi Lulu, you did make me laugh about the watch giving you a day off 😂

You're also spot on about not knowing what our HR was before all this virus malarkey. I have no clue.

As for feeling worse now, it's an interesting question you posed.

I would say these last 4 weeks I have gone backwards. My breathing is more restricted. I have less energy and I can't walk anywhere near what I was doing say, back in the Summer. I don't know if its a bad patch that will correct itself or if it is the damp weather we are now getting or whether I am going down hill because I now have an untreated lung /heart condition. No idea.

I expected to see a gradual improvement over the months and I did see that, but now it seems to be in reverse. Perhaps I'm going through a period of the body healing itself, hence lower energy. I prefer to think it's that.

Your rhinitis problems sound very familiar to me. I have the lump and the constant feeling of torrents of mucus at the back of the throat/nose. God knows where it comes from and why, but your diagnosis sounds familiar. You seem to be on a very similar timeline of symptoms as me.

What do you think in answer to your own question? Are you worse or is it expectation? For me it's both.

I think 🤔

Well done on the nasal rinse by the way. I must get some myself. I have the pot thingy but no sachets. I have suffered with nasal trouble over the years so I've been here before.

Take it easy Lulu. Enjoy your evening.

Hi Stuart and everyone

Interesting to hear what you think about your progress and I'm same I really don't know any more - when I think back to a couple of months ago I think I was coughing a lot more and spitting out mucus (sorry!!) regularly throughout the day and probably had more chest pain than I have now - so maybe it is just the trajectory we are on and it is peaks and troughs but overall in the right direction a bit like the Chris Witty slides 😂 I do feel that I get more tired than I did but I think that may be that I am doing more and many of my friends have said they feel tired after lockdown - think we have all slowed down. Also I do think most people are affected by the weather and a grey, wet Sunday is not going to make you feel as good as a warm sunny Sunday - anyway who knows?! I just know I do feel quite vulnerable this winter and I hate that feeling - I am not used to being worried about health issues I've always been really hardy!

I hate to admit it after all this time of having the Neilmed (btw I don't work for them even though I suspect my consultant does😆) sitting on the side but I think the nasal rinse has actually helped - I rinsed each nostril, sniffed the remainder of the water up my nose, then gave it a good blow - I do feel clearer in the head!

In summary, I think my lungs have improved although far from perfect but the nasal stuff has maybe got worse but maybe expected with the heating going on and change of temperature.

How is everyone doing? Hopefully having a relaxing Sunday.

Take care,

Lx

Hi Lulu,

Finally come round from the stress crash of Fridays debacle.

Your right when it's cold, dark and damp it doesn't make you feel your best.

I've had a bash with a Neilmed and even though it cleared my nose it was only temporary fix. I've also found my nose sometimes clears of it's own accord! Bizarre.

I had a flu jab on Thursday and no ill effects. Due to shortages my GP said it would be December but put me in touch with a local chemist who gives the jab for £15. I wasn't arguing.

Since I've been on the steroid inhaler my chest mucus has dried. Unfortunately, it hasn't done anything for the upper respiratory mucus but it's something.

I hope everyone has had a good weekend and fingers crossed this sh1te finishes quickly.

Jim.

So glad you are feeling better Jim, it is a tough time of year at the best of times yet alone after the past six months we have all had to battle through.

Good news about the flu jab, I am still nervous but think I will end up having it - I have a e-voucher for Boots from work (don't ever say they don't give us anything 😂)but can't use it yet.

Have to say I think the upper respiratory tract mucus is what is causing me most problems now for me too. I am seeing consultant on 13th so will ask more questions and try and get some answers for us.

Yep think we all deserve a break from this - we have done our time and need some relief. Think fair to say we are all worn out by this never ending saga!

Take care,

Lx

Thanks Lulu.

My only real problem is the fatigue. It's brought my life to an abrupt halt, which is yet to get going.

Morning Jim and everyone!

Agree the fatigue is tough Jim but pretty sure that will improve with more time. Our bodies have done an amazing job fighting this bastad virus off single handedly with no medical interventions so it is going to be knackered and take time to recover. It has also been totally exhausting mentally, the constant stress and worry of every symptom and twinge with no medical answers - it has been really tough as you know only too well.It is positive news that the mucus has gone from your chest and hopefully only a matter of time for the nasal/throat mucus to clear (that is what I keep telling myself!). Do you remember we used to laugh about how symptoms were travelling back up from the lungs - maybe it wasn't such a stupid idea.

Just done the nasal wash but think was a bit over enthusiastic on my left nostril and now have a sinus type headache which I never normally get - anyway lesson learnt need to be more gentle! I also think the water was a bit too warm!

Spoke to my son who is in NY at moment and he gave me a big lecture about diet and rest. He eats seriously healthy to the point of being seriously boring but he is right we need our immune system to be in tip top condition especially at the moment so I had a google of all the foods which support the immune system - many of which I eat already but hard as I looked I couldn't find Cadbury's Giant Chocolate Buttons on there!! Anyway am going to try and cut any rubbish out of diet and go to bed earlier!

Where's Gary?? Hope you are ok Gary, presumably feeling much better and/or just busy with working - either way hope everything going ok let us know when you get a moment.

Have a good week everyone.

Lx

Morning everyone well that has been a eye-opener this week has been one of the longest of my life Saturday night was just horrible wet and cold and we had a big job on four heavy timber bearers to put in and just me and my mate decided to put them on the trolley together okay at the time but Sunday couldn't move the top half of my body was also getting tight chest and head and neck tension thankfully all OK today still getting ear tension and tight chest but I have had to go through the fatigue pacing during the day got lots of housework to catch up with looks like everyone is working on the pacing as well I have a week off now not heard anything from my gp except for the flu jab which they are trying to fit in for November never really worried about winter before because I'm outside most of the time still hoping one of us gets there soon see Mr trump caught it never mentioned paracetamol and water for him still taking zinc myself that's it just hoping it will go in time hope everyone has a good week Gary

Morning Lulu,

Sounds as you have a very sensible son. One to be proud of!

Totally agree we need to take extra care of ourselves.

I've just picked up a new nasal spray, which my GP prescribed after hearing the steroid inhaler had potentially dried my chest mucus. I'll post an update when I've used it for a week or so.

Have a good day.

Jim.

Morning Gary,

So glad to hear from you pal.

Your news is great! Managing to do that on nights you should be really chuffed.

It's amazing how Trump has improved in comparison to our cohort. Just goes to prove how much they now know about little sugar.

Keep improving Gary your my target!

Jim.

Morning Jim how are you doing mate been a tough few days because I have had the heavy hands and legs I must admit I was a little nervous about the fatigue but I thought if I can get through this week I can rest next time I go in its on days so that will be easier I hope you're stepping up your walking and resting I'm still getting trouble with my breathing little stabbing pains still there I'm hoping it's the healing process Jim hope the nasal spray is helping you long time since I took the Neil meds mine is just dry walking home with my daughter today seems so much easier than a few weeks ago I'm not going to bother with my gp anymore don't think there is any thing more they can do or give me wish the tight chest would do one with the tension sorry lulu been busy with work your son is exactly right but like you I've never been one for the dieting have to rest or the fatigue will bite just got to get it right with the pacing I've booked five out of my seven nights off next time I'm going to try and get better before I do the next seven I've earned a few beers tonight so I will later last orders at nine so I will have a couple I know we've all got long covid anyone know how long though was telling the bloke I work with how lucky he was on the 20 th March I didn't touch him hope your all having a better Monday Gary

Hi Gary,

I'm up and down but not in a good way. I have to try to keep reminding myself I've improved.

As for the walking, being honest I've been slack but started up again.

Enjoy your well deserved beers!

I know what you mean its got to a point where we are hoping for time to go and we feel better never ever thought of it that way maybe if 2020 did one and we were all healthy again and could get on with our lives I would take that I will try and enjoy the beer later thank you Jim it's actually a nice day here hope you have a good day Gary

Hi all glad you got your flu jab jim and your OK ☺️ I did my sleep in at work Thurs night and it was OK but didn't do alot when I finished on Fri was shattered by 2pm Fri, I'm just trying to rest now when I can which for me is hard work. I'm still getting the sinuses etc and mucas don't think we're ever going to be free of it. I don't think trump has had covid it's all a properganda stunt if he was on oxygen like they say he wouldn't be doing so well? Hope you all have a nice day, its sunny down here 🌞🌞

Hi everyone 😃

Sounds like we've all got the fatigue, hopefully it's the final stage and we'll get through it soon.

I've had a very up and down week, can't seem to get the pacing right and using up what little energy I have. Will have to try harder this week

Thanks for updates on Neilmed, Lulu, I've ordered some, hoping it'll help clear my nose. I seem to still have a lot of mucus, still not sure where it's all coming from

Have a good day everyone

You are doing really well Sue. I couldn't do a night shift yet.

I am glad I managed to get the flu jab especially as I couldn't via my GP.

The nasal mucus is a pain isn't it.

Hi Gary

Sounds like a really tough week - must be so hard for you doing a physical job but glad you have some time off now to get some rest and relaxation.

Am so angry where Trump has tweeted don't be scared of Covid - what an idiot - as you say he might feel differently if he had been told to drink water and take paracetamol and if you can breathe stay at home! I knew he would belittle it - the guy is a joke. All those people who have lost family and friends and those still suffering - really undermines the seriousness of this.

Anyway just the thought of him makes my HR rise so am going to calm down!!

Glad you are ok and take it easy.

Lx

Hi Jo

I'm same the days I do less I feel almost normal but then I go and overdo it and realise am still suffering! Let me know what you think of the Neilmed I've used it in the morning and evening - I would say do it gently until you get hang of it and I definitely squirted it too hard this morning but I love the feeling it definitely clears you out and says on instructions to sniff a few times after and then blow nose hard - it worked for me! Hopefully will easy the stuffiness and mucus 🤞

Lx

Hi Susan

Well done on the all nighter - that must be tough but another step in right direction and definitely rest after doing that. Have you tried the Neilmed sinus rinse - it has made a real difference and is easy to do - it seems to have stopped the lump in the throat mucus feeling - might be worth a try if you haven't already.

Glad you have enjoyed some sunshine!

Just told Gary my view on Trump and it is too early anyway to say you are recovered I felt pretty ok for the first 10/14 days before it really hit - something not right about the whole thing.

Take care,

Lx

Morning lulu I'm awake early got headache too true trump is a joke probably publicity stunt if he has got it I hope it comes back and kicks his back side had a few pints last night will rest today washing and housework to do hopefully drop back off to sleep now hope everyone has a good day Gary

Just read an article on Google from the BBC on long covid it has a chart on it as well all the different symptoms looks like we've been the unlucky ones which we knew all along worth having a read everyone Gary

Morning Gary,

You're up bright and early pal.

Did you enjoy your beers?

I've just read the BBC article and we're definitely the unlucky ones. There didn't seem to be any answers nor signs they've any ideas about the covid virus.

Well, now they've acknowledged long covid they need to press on and start looking for answers!

Just finished steaming my head.

Have a good day.

Jim.

Morning Jim I did enjoy the beers what I am trying to do is just get on with it now like I did before I got it so I know I'm not going to get much help and I'm not even sure they know what to do to help we've all helped each other to get where we are I can work and do all the things I used to do except I have to pace myself I'm hoping the tight chest and ear tension and headaches will go on their own as they have eased the one thing I did notice is I have to drink more water when I'm working I am a lot drier mouth wise happy steaming Jim try and have a good day Gary

Thanks for advice on Neilmed, Lulu, looking forward to using it, have to study instructions. I've got the squirty bottle, is that what you've got?

Are you still avoiding citrus fruits cos of reflux? I was really missing them so I had a couple of little oranges yesterday, but I don't think my stomach was too keen. It's a shame we're not supposed to have the things that fight colds like citrus fruits, garlic, onions. I do have some tomato on my pizza though!

I've read the BBC article, Gary, seems they're starting to be interested in us a bit now, but we won't get any help. I'm still trying to work it all out for myself. I had a little consultation with myself today to decide what to do. Resting doesn't suit me so when I'm tired I shall potter!

Has Trump really had it? How can he be recovered already, and if so, hope everyone else can have all that medication that he was given

Enjoy your evenings everyone 😃

Hi Jo

Yes I've got the squirty bottle! It has definitely helped with my blocked nose and mucus/lump in throat. I eat a large handful of blueberries every morning and always have a kiwi fruit (apparently they have twice the vit C of an orange and twice the nutrients of an apple!) I then have a boiled egg with a slice of marmite on toast! So yes still eating fruit as I really like it and also still eat lots of tomatoes - I also eat half a bag of organic spinach most nights I stir fry it in olive oil and garlic - its delicious and really quick.

My friend sent me the article Gary mentioned, seems there is a lot in the news now which is good for us - annoying though Boris has denied having longcovid - think it is pretty obvious he has but is protecting himself and his job by denying it - you can see he is still not well.

I think Trump has had it and probably still has it - been pumped full of steroids reckon he will crash and burn in next few days - not that I would wish that on anyone but be surprised if he doesn't.

Take care, hope the Neilmed helps you.

Lx

Hi Gary and everyone

Hope you caught another couple of hours sleep - as I said to Jo reckon he has had it but definitely not out of the woods yet.

I am still getting tight chest - had to finish clearing my mum's flat today so was up and down stairs etc. and chest tightness came - if I am just pottering around or even walking up hill I don't seem to get it - if I am darting around and maybe feeling a bit stressed it comes on - makes me realise I am still definitely nowhere near right - very depressing. Anyway resting this afternoon. I am same as you doing everything I'd normally do but never quite sure what is going to trigger the symptoms and how I will feel from day to day.

I know you are done with your GP and just getting on with it, I feel same, but I did ring mine Friday and basically told her I want it recorded on my records that I have had C19 and 7 months later I am still unwell and then listed symptoms - just think it is good to have it recorded on your medical notes as we don't know what is going to happen in future and if any treatment we want to be eligible. Don't want them saying well we didn't hear from you since June or whenever so you must have recovered. I will ring again before Christmas if still not 100% so they know. Despite telling her testing wasn't available in March and having a clinical diagnosis from CT scan she would only put Suspected Covid. In some ways that suits me as not sure it is good if you want medical/travel insurance etc. in future to have had a formal diagnosis by testing. If it suits us when completing forms we can say we didn't have it - I am sure it is a question which will soon be on medical forms. The uncertainty of not being tested works both ways.

Sometimes I think we are the unlucky ones but then other times I think perhaps we have been lucky - depends how I feel on the day!

Take care,

Lx

Hi lulu I feel like the tight chest is easing but like you said it comes back with a vengeance I really felt it Saturday night but Sunday was fine I'm getting the tension a lot but I can deal with it even though I know it is there Sarah the woman who is a speech and throat specialist has my notes and knows I have long covid I'm pretty sure she has sent a letter to my gp thats where it stopped maybe they have a backlog I'm not sure but I still don't think they are going to do anything for me I can manage most things had a bad case of the two bob bits the last couple of days could blame the beer enjoy your evening Gary

I know what you mean Joanne it's probably best if we try to work it out for ourselves but it is a tough one to call because it is still giving us these problems after all this time even though I feel I can manage it I would still like to have an inclination to when it will stop if someone could tell me that I would be over the bloody moon Gary

Nothing worse than a case of the two bob bits 😂 my doc told me that they think C19 may affect lining of stomach which causes GI problems and also the reflux problems everyone seems to have acquired since March OR as you say may be just too much beer 🤔😂

Are you still coughing at all? How about sore throat has that completely gone now?

Lx

No coughing never really had that sore throat seems okay but that can change I'm only now getting head and ears tension tight chest did have heavy hands and legs but that has also eased except my left hand tingling a lot but I can deal with it every fepsw days I get that sickly feeling for like half an hour before it goes Gary ps also tension across the neck

You eat healthily, Lulu, I love the sound of that spinach, sounds delicious, I'll have to try it. I'm eating loads of fruit too, but maybe not citrus just yet, I'm having grapes and melon, ooh I forgot about kiwi, have to put them on the list

Yes, Gary, we just need to know the date it's all going to end, now!

Afternoon everyone not done a lot today was just basically chilling when I was thinking about the situation we are all in well surely the experts must have some sort of information now about long term covid and what we should be doing I understand about the pacing and fatigue and everything else we all do but what about getting better or do we have to try to live with it till it goes I'm not sure if I ring my gp they will be able to answer me does it stop when the tight chest goes I'm still getting sharp pains in my back that come and go if I went and asked someone at a and e would they know I could ask Sarah but she deals with speech and throat issues etc or as I said before stop moaning and get on with it? Gary

Hi Gary

I don't think you'd get any answers from anyone, they really don't know. I'm getting back pains too, is it my back, lungs, related to stomach? Who knows, haven't a clue. As you say, maybe just get on with it, unless it's really bad of course. I still think these new/returning symptoms could be caused by the change in weather.

Hope it eases off for you soon

Hi Joanne I don't think it is to do with the change in the weather I work outside and I have never bothered about it before your right about they haven't got a clue but I thought because it's been over 6 months maybe the experts would have spoken to maybe the Chinese Italians or the Spanish and sussed out a little bit about why it hasn't left us like it's our immune system or we got a bigger dose of it which may be still lurking in our system or some drug that will help us or it will just go in time or what damage it is doing will the fatigue go etc I know I have to get on with it and I will would be nice to know if or when there is a chance I will get better right now I'm going to sink a few pints see if that helps 😂 Gary

Good evening my covid buddies. As a lot of you have said now that we've all reached the 6 month mark, it would be nice to know when this nightmare will end !! It's such a comfort to know that we're all not suffering alone. Jim I hope work goes ok, is it your first week back ? I'm having a few work issues but am being proactive and putting my health and wellbeing first. I'm going to speak to my GP maybe next week to ask if there's any help out there, I can only but try !! Enjoy your evenings everyone

Hi Steph,

Yes, it's been week one back. Work dropped off a laptop and I've done very little bar email and admin jobs.

Being honest I can't see me being able to return to my usual job but there's a few months before that would be implied by work.

Come March if we're still suffering with symptoms it'll be classed as a disability. Yikes!

Hope your well.

Jim.

Hi Jim, everyone

Let's hope by March we're all ok...and while we're hoping let's also hope the world will be doing better then too!

Someone asked me yesterday how I am and I was able to say I'm so much better than I was and then she asked are you back to your old self completely and I said, that I'm not! I am able to do pretty much everything but I do need a lot more rest to help function well, like a nap in the day if I've not had 8-10 hours sleep at night. Otherwise I feel unwell.

Reflux seems to be settling. Still with the odd muscle pain which isn't terrible. Eye trouble I still have though. In fact, had a bit of a moment when I was driving down the M1 and my right eye started to sting badly and water, literally had to drive while squinting!

Did loads of walking today and realised it was just too much. Find I do much better on days that use much less exercise.

Seen long covid in the news a lot lately and sounds like they will actually be doing something about it!

Hope you've all had a good day!

Morning guys,

What a horrid day. The weather is awful.

I woke up this morning to the sound of rain bouncing down.

As now is the norm, I'd dreamt all night strange things. Pre covid I never really dreamt.

As I laid in bed, I started to think of what it was like to wake with energy, a list of things to do without any concern and not having the internal reverberations.

Unfortunately, groundhog day has reset yet again.

Well enough if the negativity, time to get a grip and get on with it. Sorry for being down. Sometimes it just comes over me.

Hope everyone has a good day.

Jim.

Morning Jim and everyone I had the same sort of day yesterday not any different to many other days just was like thinking if there was anyone who knows if we are near the finish line or got any ideas it's got to the point where I can deal with it if I don't over do it gave my oximeter to a friend yesterday don't use it anymore and she has just lost her sister who lives in Canada so she was all over the place trying to work out how to get there etc weather not too great here either Jim hope you pick up today Gary

Hi Gary,

I'm sorry to hear of your friends news. What a terrible year it's been.

As for whether we're near the end pal, I've no idea. However, following your advice I'm trying to do more and remain positive. Obviously, it's easier said than done.

As someone has previously said there is much more knowledge of our plight and we've been mentioned more in the press and on TV.

I think it'll be a long time before they find anything for us, so we need to soldier on.

Alcohol definitely helps.

Be good,

Jim.

Yes I think you are right Jim just have to crack on with it and become an alcoholic on my days off and just try and work out a way to make it work so it's easier 6pints a night might do it just gotta deal with the two bob bits in the morning 😂 Gary

Sounds like a plan pal!!!

Morning guys,

A change of medication yesterday and as a result I've been awake since three.

Back to the old medication tonight I think.

Have a good day.

Jim.

Oh dear Jim. 😳

You must be exhausted.

Was this from the GP?

Sorry to hear that Jim - every day is a challenge in a different way! I fluctuate between chest issues and sore throat - it is either/or most days!!

Yep if only we knew if this is ever going to end. I have to keep telling myself that I am very slowly improving - I think you need to look back over several weeks to see the improvement. It is six weeks since I was away with my son and even though I have had many bad days I do think overall I have improved - less mucus, less coughing.

Have a power nap (apparently no more than 20 mins!) and hopefully sleep well tonight.

Lx

Really have to look at it like that, across a number of weeks, even a month to see there is actual improvement.

I'm not feeling good ☹ clearest sign that I'm not back to myself however great I've been feeling recently. And I know exactly what's brought it on. Chessington world of adventures on Wed with the kids who were off school and I'm paying for it since! I am fine doing the regular day routine but this was too much for me. Feeling so fatigued, nauseous, muscle aches, headache today, having to take breaks after everything!

Afternoon dane and everyone that's all it takes still bet the kids loved it I also knew that I had overdone it after the week of nights I have time off till Sunday then I go back to work on days which are easy still have to pace though I've actually cut down on a lot of the normal stuff just do what I have to once the tight chest goes I will try to step it back up again and see what happens got the usual ear tension tight chest and heavy hands and legs but feeling fine just like everyone else wondering what is next hope everyone has a good evening Gary

Hi all I've been decorating this week in between work and child minding last couple days been feeling tired been over doing it need to remember haven't been well for 6months. Still getting odd cough, feeling like cold coming, sinuses but like u all we have to battle through ☹️🤒 do feel livelier when sun shining tho! It could be weather related. It concerning that its spiking again brighton is the worse around here I do worry we're get it again but try not to think about it. Trump is a joke he really isn't all there a dangerous man, I think it's a publicity stunt you can't be on oxygen one minute then be OK the next day. Hope your all well ❤️

Hi Susan & everyone

Sounds like you've been very busy!! It is so good though you have managed to do so much. I do think the weather affects most people regardless of Covid - we could have done with another few months of sunshine to get over these last symptoms - I am same worry about getting it again but try not to go down that road - it is out of our control to some degree and just have to follow the guidelines, use common sense and hope for the best!

Have had a pretty good few days but am always aware that my throat and breathing is not right just have to hope it continues to improve. Had an on/off sore throat but am seeing ENT guy on Tuesday if anyone has any questions - got a feeling we have asked all the questions we can think of over the last 7 months but let me know!! - he is very chatty and seems to know a lot about what is going on with C19 and research so will report back.

Take care everyone, hope you all have a a great weekend without too many symptoms.

Lx

Morning lulu and everyone I've got some good news for once I start back on days today so up early my stomach is going mad but the good news is most of the tension seems to have gone from my head and ears getting some across my shoulders also the tight chest is easing daily still there hopefully after this week of days it goes who knows I just got probably the same question lulu any danger he knows how much longer it will be with us if we just get on with it hope you all have a good Sunday Gary

Hey Gary and everyone!

Good news things improving for you. Surely things must settle completely soon just think main thing is to try and avoid catching anything else, even a cold, every week we avoid is another week we are healing.

Will ask him but if I had to hazard a guess he will say a year to fully recover (think they've had to rethink the 6 months originally stated!) which is fine so long as we keep moving in right direction.

Hope your week of days goes well and you can see improvement from last time.

Enjoy your day everyone! Just off out for a long walk in the forest hopefully in the sun.

Lx

That's fine lulu I would rather know I know each day I'm feeling better some days it hits me for a bit then goes the headaches and earaches were there for quite a while only slight tension now and again may be a year hope not but it could be worse we could be one of those just getting it enjoy yourself walking suns shining here as well Gary

Such good news you are noticing a real improvement Gary. I felt pretty good today did long walk 4.5 miles climbed 28 flights (according to my watch) and breathing was good but then this afternoon chest feels tight - it is just easing off now - what causes that??!

My son, who I saw Wednesday, luckily outside and socially distanced, received a text from work today to say one of the girls he works with has tested positive and they should all isolate for two weeks and wfh. What an utter nightmare, it is never ending. It has so many implications as he was away last weekend with friends, he has a g/f, he has flat mate - had to let them all know. Hopefully he will be fine, he doesn't have any symptoms. I feel sorry for everyone but think it is tough for the youngsters, especially the ones who are trying to follow guidelines and are concerned about their parents/friends but also need to get on with their jobs/lives.

Lx

Hi lulu I think it's just a time thing with it a long time but I think we will all get there I'm only worried about the fatigue I wish I knew if I could push it I will do the day's and couple of nights then I'm going to push myself to the limits and see what happens if I break down or fatigue gets me then I will know I have to take it easy but sooner or later we have to go for it Gary

Hi everyone 😃

That's good symptoms are improving, hopefully for everyone

A year is ok, so long as we can see the gradual improvements, and it all ends there

I'm still working on the pacing, trying not to have any more setbacks, hopefully. It's the fatigue mostly getting me, I seem to get tired easily with physical stuff like walking, after 20-30 mins

Lulu, I'm finding neilmed really helpful, thanks for recommending it. It's a weird sensation though, like swimming underwater when you get water up your nose. It clears everything, I must have a lot of inflammation as there's loads of it!

Hope everyone enjoyed the sun today(if you had it)

Hi all hope everyone feeling OK today sun's been shinning been out walking with my clients and sitting outside having coffee today at work, so a nice shift. I really hope we all stay well and safe this time round.

Same Jo. It's the fatigue, really feeling it after I exert myself. I'm also starting to realise what fatigue symptoms for me are, aside from obvious tiredness because I noticed my eyes will sting more and I feel nauseous. Had it today so went to lie down and completely conked out for 1.5 hours!

Did enjoy the sun today though!

Hi Jo and everyone

I'm same with the tiredness but just sit around a lot in between doing walks etc. Im lucky my partner does a lot around house and have a cleaner so not much domestics for me these days! Must be so hard if you have family to look after whilst trying to pace - that must be tough!

So glad the Neilmed has helped I love it do it every morning really clears you out wish Id taken consultants advice and used it when he first suggested it.

Sounds like you had a good shift Susan and the weather makes such a difference.

My eyes are red in morning Dane but settle during day. Have to say feel generally quite rough first thing when I wake up!

Here's to a good week ahead everyone!

Lx

Afternoon lulu and everyone I'm finding everyday that the tight chest is easing more if I have to do lots of work what I'm finding is the hand and legs are heavy and I get head tension but when I rest it eases I'm resting at the moment got a nice day tomorrow just walking a few miles my breathing just gets a bit heavier when I push it but do feel a lot better these last few days I'm hoping everyone else is I still get the traffic light eyes now don't know why weird Gary

Hi Gary and everyone

That is good news about the tight chest!! I feel overall my chest and breathing is better than it was. I also generally feel better in myself but who knows if it will last?! We should be feeling more consistently better Gary we are about 7 months in 😲 I still have a bit of a cough especially in the morning and at night - anyone else still coughing? Not sure if this is coming from the mucus in throat or from lungs will ask when I see the ENT guy tonight.

If there is any groundbreaking news to report back on from this evening will let you know but my bet is there won't be!! It will be give it time 🙄

Take care,

Lx

Hi lulu no like you I feel I am improving daily but it is slowly the thing I did notice is I'm not getting the horrible feeling I was getting like I feel ill for a while and it goes still little tension heavy hands and legs little mucus and tight chest but I know that is easing I have three days left to do this week then two nights next week then I will have a bike ride and see if I can push myself Gary

Hi Lulu, Gary and everyone,

Good luck with your appointment. I can't think of anything that you won't already be asking.

Gary good news you're doing so well pal.

Had a little cough this morning, bit of a sore throat/lump. Felt run down and tired today. My arms felt like I'd been to the gym. Coughed up some green mucus after steaming this morning. Hopefully that was from my nose rather than coming up from my lungs. I haven't coughed mucus like that for months.

Weather wise its horrible up here. This morning was sunshine but since 11 its thrown it down.

Back to the TV fir me.

Jim.

Hi Jim

If it is any consolation it is chucking it down here too - really miserable. When I cough it feels quite "raspy" but I suppose over a long period of time it has slowly improved but would like it to go away completely - never had a cough before all this! I will ask about where he thinks the mucus is coming from - he will no doubt do an endoscopy thing so will be able to see what is going on at back of nose/throat.

Will report back later!

Lx

I'm same Gary and it is good not to be having that cycle of keep feeling ill and then it goes and comes back again - maybe that is our immune system adjusting back to normal (just a thought!).I'm feeling positive today, we will be better just a little way to go now. Don't forget we still need to crack open that fizz but we have to be sure we are better before we do that!

Lx

Of course lulu and if everyone still wants to would be nice to meet for a everyone better drink lol Gary

Hi everyone

Consultant was pleased did an endoscopy and said the inflammation was improved from last time showed me on a photo chart of red/inflamed throats and mine originally was severe and now moderate/mild. He asked about other symptoms and said the fact they are improving, albeit slowly, means they will continue to improve - will just get better and better. He said don't fall down the long covid rabbit hole - it is not good mentally to label yourself - it is just a long drawn out recovery but you will recover. It can happen with other viruses. Glandular Fever, Shingles etc. He said to continue with the steaming, Neilmed nasal rinse, drink plenty of water, thought the mucus was from nose/throat although was better than before.He said to try and stop focussing on the illness and just get on with your life - go out, go swimming, go walking - when you are tired rest etc! Basically chill out - stress will make everything much worse.

Anyway seeing him again beginning of December.

Hope it is reassuring for everyone.

Lx

Yet again Lulu you've done our little cohort a great service.

On behalf of everyone, I thank you for the update.

Thanks so much for sharing Lulu, that's really positive news for us and great advice.

😃

Thanks lulu that's great news he is exactly right I have been trying to do exactly that I try hard to not mention it now some friends do ask me and I answer honestly but I feel it will be OK for us all sooner or later Gary

Great Lulu, so good he could see an actual improvement!

I am also trying not too let idea of long covid get in the way of doing what I want. Just trying to manage the fatigue as it helps if I know my limits.

I've an appointment for an echo in November but that's all for now.

Keep up the improvements everyone!

Hi everyone, thanks for feeding back to us Lulu you're a star !! Gary I'll be up for meeting up when we're all better, would be nice putting faces to names.

I spoke to my GP yesterday and she said we really need to get the congestion sorted, she seemed really concerned and has prescribed me Betnesol it's steroid nasal drops to take for a month. If not better then she'll prescribe me steroid tablets. I'm a bit nervous about tablets so really hope the drops help. 1st day of taking so I'll feed back everyone.

Hi lulu that's good and positive hope everyone is improving 💖

Hi all my think I'm getting a cold feel crap it's just come on this evening 😢😢🤧🤧 my daughter had head cold last week and I have my grandson on Monday and his got a cold today as well. Work will send me for a test.

Hi Susan

It may pass I have felt like I've had a head cold all day today but it has worn off a bit this evening - I get this quite frequently where it comes and goes. The temperature has dropped today so possibly that but always safest to be checked and assume you need to be because of work but sounds like worse case scenario it is "just" a cold and sure you will be fine. We are not babysitting at moment as they are just little germ bags at this time of year and pick up everything from school/nursery!

Have booked flu jab for next Weds so a bit worried about that!

Let us know how you get on and how you are feeling tomorrow.

Lx

Let us know how you get on with the nasal drops Steph - hopefully they will make a difference. We'll all be phoning up GP for some!

Lx

Hi Dane,

Yep am def not going down the long Covid route am just thinking it will take a bit more time but things are improving - it seems to be two steps forward and one back but we will all get there. We have come a long way since March.

Hope you are doing ok and be good to get the echo done in November - better late than never for all these tests.

Lx

You have been great with just getting on with it Gary - no-one bothers asking me any more they just assume after 7 months must be better!

Hope all ok with you and you've had a good week at work.

Lx

Hope all ok with you Jim, how are you doing? Are you feeling better?

Bit depressing we have gone into Tier 2 lockdown - I will be back to Tuesday Prosecco on the green at this rate! What a complete nightmare this is just can't see an end to it.

Lx

Yep it was positive news Jo, hope you are doing well and have had a good week. I think talking to a medical professional, even if they can't give you anything, gives a real boost and fills you will optimism. He was very upbeat and didn't seem worried - was kind of saying its not that unusual after a virus to be unwell for a long period. Just remembered my Auntie had Shingles and was really ill for about 18 months so that is probably what he means. She did get better!

Lx

Hi Lulu,

I'm not bad. It's the fatigue that is the problem. My GP says it's a time thing.

All we can do is wait and see. If my Mum was alive she'd tell you I never liked surprises!

You're sounding chipper, which is good.

Sue,

Hope you're okay.

Hi lulu and everyone yes I have been just getting on with it and work it's the fatigue I'm worried about I have a little tight chest now and again been tired today but should be an easy day tomorrow then a couple of days off would be great steph one day if we could all meet up somewhere and have a drink together hopefully when the more than six thing does one with the little sugar I think we need to move pages again just in case Stuart can't find us hope you can and your feeling better Gary

Hi Lulu,

I'm ok thank you. Fatigue is what I have mainly but it's not as crushing as it used to be and I'm keeping very busy so it's in the background now.

Had the flu jab today, so far so good, just muscle in arm a bit achy which is normal.

Yes it is better late than never with the echo! Getting heart palpitations a bit so want it checked if only to reassure.

I think plans to meet anyone now is going to be a challenge considering the almost incessant rain!

I'm actually relieved for tighter restrictions as clearly govt hasn't got things under control 🙄

Hi lulu hope the jab OK I've had mine and no problems, it's hard I have my grandson every Monday as my daughter works and at a school lol not much hope for me. I'll let u know later how I am OK at mo so going to work, don't think having to wear a mask all day helps.

Hi jim felt like I've got a head cold but no other syptoms but wearing mask all day at work which dosnt help. How r u doing now r u on lock down? They r in Burnley.

Morning Sue,

We're tier two whatever that means.

People up here have been so blaise about it all since the initial lockdown was raised it's not surprising.

I've found it's mainly the under 30's that don't seem to be bothered.

Young and invincible and being honest I was the same at that age.

It's only our current predicament that's changed me.

Hooe everyone has a good day.

Jim.

I'm ok thanks, Lulu, having a bit better week. I'm trying to rest when I'm tired, and to recognise the signs, instead of ignoring them. We all seem to have these cold symptoms and the fatigue, hope they go away soon.

We're on tier 2 here in the midlands, I haven't been able to work these last few weeks as I work with children in their homes.

It would be lovely to meet up, but I don't think I'd be able to as it's a bit far for me. I'll certainly drink to our recovery though, soon hopefully. 😃

Hi Jo and everyone!

Had a good day today met a friend and went for a long walk and pub lunch - we managed to sit outside although it was a bit chilly after 3 hours! We are on Tier 2 so can't meet inside house but as Dane said think I feel better when there are more restrictions and hope people follow the guidelines - things seem out of control at moment. Just had letter from consultant to my GP and he says amongst other things "anxiety plays a big part in reflux symptoms and is not helped by the current Covid 19 situation" - not sure how I feel about that - hope he is not implying it is anxiety! Its very easy when you don't know how to treat something to put it down to anxiety.

As Jim says everyone blaise about C19, especially the youngsters, if your life or someone close to you have not been affected by it - I always think ask Kate Garraway if any doubt about the seriousness of this virus and hear what she has to tell you about it - such a sad story and her husband will not be the only one battling in ICU since March - people need to wake up to how it doesn't discriminate, being young and fit is no guarantee you won't be affected badly.

Off to have a large glass of wine and relax for the weekend, hope everyone had a good week and great weekend, hope things continue to improve for everyone.

Take care,

Lx

Lulu,

We all need to live our lives to the maximum we can, whatever our current position is.

I've had lunch with a close pal today and done bits and bobs. If I can't do anything tomorrow, well that's how it is. I can't change anything.

Just about to finish a bottle of a rather splendid Shiraz.

Enjoy your wine.

I hope everyone has a lovely weekend.

Jim.

Morning Jim and everyone you have it exactly right we are still all in recovery and have to try and live our lives best we can but I will always be forever grateful to res and everyone else on here because you all brought me through a few months where I honestly thought I wouldn't make it especially at the start when I didn't have the symptoms that the so called experts were talking about flu like symptoms possible covid I shall never forget that I hope everyone has a good weekend gary

Gary,

I agree wholeheartedly with your sentiments. There's no way I'd have made through this far without everyone's help and support on the forum.

I can honestly say I was at the very bottom both physically and mentally.

Yes Jim now let's try and push on and hopefully get rid of all the symptoms that we have hope you enjoyed your shiraz and lulu the wine I will participate in a few pints tonight enjoy whatever your up to Gary

I echo everything you say Gary and Jim about Res starting the forum and everyone supporting us on here. You've been just the medicine a lot of us have needed in our hour of need !! Enjoy your weekends everyone.

How are you doing Steph?

Yes it's true steph was feeling good this week fatigue is playing up today though don't know why feeling tired and not done a lot enjoy the rest of your weekend gary

Sorry to hear you're having a rough day pal.

I've got a lump in my throat and mucus.

Happy days hey!

Ah well we'll crack on Jim tomorrow's another day might feel better after a few pints tonight can lager kill fatigue 😂 doubt it Gary