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

Hi Michelle,

Has there been any significant improvements?

How long between relapses?

When your feeling good can you do what you used to?

Regards,

Jim.

It is a very very odd illness. It really is. On my better days I start to make plans then on my worse days I cancel them😂.

Very draining and really without rhyme or reason as to why you can feel so much improvement one day and be brought crashing down the next.

Hope you do better soon Michelle!

That's the thing I can't understand - the way it comes back. It's like it resets and goes again. I can't imagine what is happening biologically for this to occur.

It's like we're computers with a virus and the programming is stuck in a loop.

We need one of those virus cleaners and a reboot.

That's why I'm taking it day by day Stuart as you never know when this little "sugar" will rear its ugly head !! Between us all we've managed to suss some of the triggers but nevertheless it does catch us out sometimes.

Same as me Steph. Day by day.

No not seen it Steph which channel is it on - might watch it on catch up.

Lx

Hi Lulu its on bbc1 everyday for half an hour but this one was a special lockdown one. I've had a relative in hospital with covid so maybe that's why it got to me !! xx

Oh really Steph am so sorry I didn't realise that - really hope your relative is getting on OK will they will be home soon 🙏

Will see if can get it on catch up.

Lx

Think we are on a different page again .. LOL!

They're home now recovering slowly like most of us here.

Yes think some of the others are on previous page lol It's so confusing !!

My friend's cousin was in hospital for a couple of weeks on Oxygen about the same time as I became ill - he is still recovering so maybe it is just the fact we did not end up in hospital which is making us feel we should have recovered more quickly? It must be a fine line between staying at home and being admitted.

Are they struggling with recovery and do they get any more support as been in hospital? Does there recovery seem to be along same path as ours, i.e. very up and down? Sorry for the questions just interested as a comparison to us.

Yep, we've got our own little thread going that none of the others know about .. it's all happening on page 66 😂

Lx

The thread is just like "sugar" up and down !! lol

Yes she was on oxygen through a mask. Her recovery is very much like ours up a down. No extra support now she's left hospital. I know one time the paramedics came and said i could go to hospital but it was better to stay at home like you said a fine line. I keep asking everyone I speak to if they know anyone who's had it just so I can find out what's happened to them regarding recovery. It makes you very inquisitive. xx

It does make you inquisitive but thanks for sharing! no-one we know or meet seems to know anyone who has had it. My partner plays golf and literally they all think it is a big fuss about nothing as they don't know one single person who has had it.

Lx

Hi found you all I've not been getting emails for a few days so can't follow you all, hope your all OK

I did leave a message for you guys Susan was trying to find us they moved again sorry Susan

Hi Susan, hope you are ok.

Sorry, we can blame Steph for that she started a new thread! The main chats today have been on page 65 - I think!

Gary is policing us now 😂

Lx

Thank goodness for Gary, what would we do without him.

So is this the thread now ...are we going to carry on from here 😂 if I get a 👍 I can find it easier if I get a reply x

Glad we're having a laugh about the pages and yes happy for Gary to police lol and maybe Jim to be the reserve lol

Enjoying a G&T this evening !!

It makes me giggle!! I've been everywhere tonight, page 59, 65, 66 - you name it I've been there 😂 this is the last page been created so think we should stay here now and Gary normally posts first in morning so hopefully he'll post here!

Oh we're back here now Steph!! Yep Gary is in charge of policing the pages and keeping us all in order - good luck with that Gary!

Am liking the sound of the G&T! I had a large glass of Rose and about to open a bag of Giant Chocolate Buttons - that's about as exciting as it gets round here tonight!

Lx

Sounds lovely Lulu enjoy !! At least pubs, restaurants, bars are all closed so we're not missing out , that's one gd thing. Hopefully once we're all better they'll all be open for us to enjoy the new norm xx

😂👍Thanks Lulu, Don't let us down Gary

Just had a glass of red, but also a hot sweat yikes x

Evening Dawn, I notice yourself and a few others have had the odd splash of wine etc. I haven't had a drop of booze for 9 weeks, I stopped after week 3. It's the longest I've gone since I was 20!! Just wondering if you get any good or bad effects from it? I was originally having a drop of whisky at night as I found it settled my irritated chest but then I was advised against it. Just don't know whether to have a drop and relax a bit. Hope you're enjoying your evening and the glass of red! 😊

I have recently sipped whiskey or a little red wine at night to get the anxiety away. If there was ever a time to take the edge off, this has been it. Never more than a glass or two and it has not caused a setback. Back when I was full on viral I would have never, but it has helped during the recovery.

Thank you Rufio. That's very interesting and you know, maybe tomorrow I'll have a little warming drink. Tomorrow suddenly looks brighter!!! 😂

Take it easy, all the best to you.

Hi Stuart,

I went 7 weeks without...long time for me 😂not that I'm a big drinker but enjoy some red wine at weekends.

I must say the last few nights I've slept much better,5 hours without waking .Only having a glass and a bit though .I can't say I've felt any worse for it at all .

I would say try a little tomorrow and see how you feel but that's just my opinion x

Thanks Dawn, I probably will have a wee dram tomorrow just to see how it goes. Funnily enough the first three weeks of this saga I slept like a baby, 8 or 9 hours straight, which is unheard of for me and I was having a drink just before bed.

Now I wake up some days sober but feeling like I have a hangover, so I'm not sure one drink to take the edge off can make me feel much worse.

Thanks for your opinion. Hope you sleep well.

Morning guys and girls Susan messaged me and I had to find you so I was chasing you 😂 not policing you that was a bad day and night for me had all the chest tightening and inflammation and headache and earache again three days on the Trot earache I had something similar to this at the start really fatigued but will try to have a pop to the shops need some bits hope you all had a good night Gary

Morning everyone!

Someone has to police us Gary we were literally all over the place last night! Sorry you weren't good. I had good day Thursday did a hilly 4.2 mile walk yesterday which normally helps clear chest but was really chesty and tight chest all night yesterday too.

Just posted a really interesting article but of course needs moderating (so bloody annoying)!! doctor/athlete saying about her recovery all our symptoms hope it pops up soon no answers really other than rest but makes you feel like you're not imaging it all and talks about all the set backs.

On the alcohol issue Ive drunk right through but only one glass and found it helps takes the edge off things for the evening - asked specialist and he seemed surprised I was even asking!!

Hope you get a better day Gary and everyone at least sun shining so that helps!

Lx

Morning Stuart and all,

I Couldn't and wouldn't of been able to drink earlier ,funny I still can't drink coffee just don't fancy it .

That's exactly how I describe it ,waking up with a hangover without the drink...today is one of those....even though I did have one glass after dinner.If you're going to wake up rough anyway you might as well 😊

Think I stayed up too long watching a film when I was tired .Only managed 3 and a half hours straight,dry mouth ,couple of hot sweats but the sun is shining which helps.

Hope you have a better day today Gary .

Enjoy the sunshine everyone x

Thanks lulu I will get on with it perhaps a few drinks later might as well can't hurt I actually went out for a walk and will pop down the shops hopefully will leave me alone today have a good one will read the article how long did it take her Gary

Thanks Dawn you too might have to drink before go sleep might as well have a bath while I'm in bed been out nice day enjoy gary

Ahh nice,

Well I've been productive already even though I don't feel great I'm not giving into it today !

Paracetamol taken ,oil taken,vits taken , showered and washing on .Walk later .

Enjoy your day x

Good to hear it dawn go for it I've been out sweating like crazy coming back but had a shower now and pushing on with it enjoy the sun gary

Morning Lulu, it's very interesting that your specialist said there was no problem with a little tipple. That gives me more courage to relax a bit.

Hope you have a good day and well done on completing a 4 mile walk.

Morning Dawn. Coffee certainly doesn't help me with anxiety. Makes me go up the wall, so perhaps your body is telling you something.

Lovely to see the sun, enjoy it!

I found the article from the doctor and read it if plasma works wouldn't that be great but the powers to be will take so long in getting it out there might be an idea all of us pop up to Stockport I'm sure she would help us Gary

Think that might be a different article - the one I linked that is STILL being moderated - it was in Glamour Magazine (it's all cultural reading round here 😂). Ill look for this one though and have a read!

I haven't touched coffee since a good few weeks ago when I literally though my heart was going to pop out my chest! I am on Twinings Pure Peppermint tea - has no caffeine but has peppermint oil in it and helps lubricate the throat - it is my go to drink at the moment and definitely helps throat and settles stomach.

Don't want you all whoopin' it up tonight on my recommendation and then feeling cr&p tomorrow - might have to write another one of my disclaimers 🤣😂

Have fun! stay positive, was thinking this morning about feeling rubbish yesterday afternoon and evening (breathing and chest tightness) but when I analysed it it was not nearly as bad as I have felt in the past so things are improving it is just VERY slow and hard to see.Think back, remind yourselves of those truly awful days and nights and I think then you can see the real improvement. I hope you all feel same.

Lx

Oh yeah ... let's all stay on page 66 today - no detours Steph or I'm calling Gary 😂

Yes my article was about 46 year old Doctor from Stockport whose blood helps people who are struggling to beat the virus something to do with plasma she is an athlete as well I'm feeling a lot better this morning now doing a few things hopefully don't pay for it later also I know you're right about when we think back at least we are getting more good ones enjoy your day Gary

Morning all I've been more mucas last couple days as well and tired. That's the Dr I was talking about yesterday she's still got symptoms after 5 months it's crazy.

Great day in the sun today I think and walk over the hills

could you please send me a link to this article? thank you

Isn't this incredible that many of us have more mucus last two days? is it something in the air? Pollen?

No detours that did make me laugh 😂 Gary

Maybe because she is a doctor she may have been reinfected or is it the one infection gary

She had the symptoms back in Feb she had come back from holiday felt better for a couple weeks them bam went down with it like all of us and she's still got symptoms after 5 months, she said we're the long haullers. It was in a glamour mag on Facebook.

Yeah I think it's the pollen and maybe the wind and rain blew it around.

Please I get lost otherwise, I get lost going outside of Brighton I've got no chance 😀😀😀

Think that was the article I was try to link - she was also an athlete?

I found the article you're talking about in glamour magazine lulu that's not good five months looks like exercise is not a good idea with it rest up and taking it easy is what we should have been doing Gary

Yes I found it Susan glamour magazine Gary

To be honest Maciek I have suffered big time all along with the mucus - when I think it is clearing up and lessening I just find my chest goes tight so it is just building up I think rather than lessening. If I could get rid of the mucus I would be nearly there - any mucus experts on here?! Why does it keep building up is it to protect the lungs from the inflammation? does it gradually get less? Ok get googling 😂 If you saw my google history it has to be the most depressing thing ever all depressing medical questions!

Lx

That's good it's interesting

It's my only symptom that I cannot shake off. I think that is a great question, hopefully we could ask some lung specialist.

Have a lemon and warm water drink first thing it's meant to help, years ago some old lady told me to put vinegar in warm water and drink that, I did it a couple times it did work but taste horrible.

I do drink apple cider vinegar with water, I've been doing this for years. But still over 10 weeks and no sign of this mucus going anytime soon. I tried everything and there are days like I think wow it is gone and I'm back to being myself. Then after 3-4 days boom like slap in my face with a chair. No warning, no call, no lovely dinner with candles, just straight in my face.

Lost it today. I switch off.

Hi maciek have you seen the articles for the doctors Gary

Mine just sits in chest but dosnt cough up only every now and then

Ok promise I won't detour lol. Trying the Nurofen today Lulu as I've got a headache. Only had the paracetomol so I'll see if it makes a difference. Enjoy the sunshine xx

Hi Gary, I've just read the Glamour magazine article and seriously wish I hadn't. Put me on a real downer. 5 months and still not better. Great. What is the other article that you mentioned, it sounds more positive?

Hi Stuart sorry about that didn't mean to do that the other doctor is type in doctor athlete recovered from coronavirus more positive Gary

Stuart, I'd not let it get you down too much Stuart after all we are only talking Glamour magazine!! it's not an article from some high brow medical publication and was probably written by some intern who just made the whole thing up from bits and pieces she researched on internet!! Probably logged on here and read everything we've said - I thought a lot of it sounded familiar 😂

Maciek I did ask my lung guy and he said mucus will gradually decrease and when chest becomes tight it is a build up of mucus which is exactly right for me. To be fair when I look back (yet again!) I think it has but it is so slow and as you say i have days where I literally think it is sorted and nope it is back - we need to be patient that is all we can do.

Lx

Please Gary, no worries, I didn't need to read it, but i did. My fault. The other article seems more positive and it reminds me of an article posted on here ages ago about a guy in China who couldn't get rid of the virus and was given plasma to cure him. Just hope they get on with it and it has positive results. Thanks for that article 👍👍👍

Yes I know what you mean I was thinking that myself but by the time the time the powers to be sort it out hopefully we we are better Gary

Hey Lulu, thanks for that. I did wonder why she was posting glamorous pics of herself and wearing ski gear, I think you're right 😂😂 I thought it seemed a bit weird to suggest the Lupus thing too, I mean, not very responsible for a doc to spread fear. I'm the sort that responds to positives and negatives quite strongly in normal life and this illness has accentuated it I think. I know not to trust everything I read. Anyway, thanks for your words. I'll ignore her 😂😂

Hope you're doing okay. Reading your symptoms I think you and I have had pretty much the exact same stuff happening. I'm much better today, hope you are too.

Yep let's move on from that story! Yes having much better day thank you. Are your symptoms now mainly mucus, tight chest, breathing?Interesting have been out today for short walk, sat in sunshine and feel almost "normal"! Wondering if my 4.5 mile hilly walks are too much 😳- am going to shorten them this week and see how it goes or wonder if the sunshine mentally makes us feel better but then that wouldn't change the mucus situation would it?! I spend a lot of time trying to work out why some days so much better than others and just can't come to any sensible conclusion!! Perhaps there are no answers!

Enjoy rest of day.

Lx

Hope it works for you Steph and you've had a good day x

I will try this Susan - think the hot drinks definitely help. Just wish it would go and not keep coming back - think that is why every few days I have a bad day I think the mucus has built up and affects my breathing.

Hope you are having a good day.

Lx

Same here, and it really brings me down.

Please could someone message me a link to the article about this doctor? Have problems with finding it. Just found from this glamour magazine 😭

Thank you in advance.

Yes Lulu, pretty much the same symptoms - tight chest, breathless, feeling of mucus. But I do have an irritating persistent cough.

I have been in the sun too today and felt much better, as you say, I could actually have been normal!

Funnily enough when I go indoors I'm not so good with the breathing. That made me wonder if it's something in the house irritating me, but I can't think what. No carpets or anything like that. Clean house.

When we had lots of sun I had a pretty good period of sustained improvement and i don't know if its just coincidence but when the weather turned bad and I spent all my time indoors I went downhill. No idea if there is a link. Perhaps the warmer outside air is good for the lungs??

I'm amazed you can do such long walks, it's fantastic. I used to be able to do them but now I am too cautious to try. If you think it's doing you good though without adverse affects then maybe carry on. I find that my body tells me pretty quick if I pushed it too far.

Anyway I hope you continue to have a good day. Enjoy.

Funny lulu when I do hill walking it effects me more maybe as were working our lungs more, been over fields today but didn't do the big ones walked for a hour and not to bad today.

Interesting Susan maybe we have been overdoing it a bit with the hills. Glad you are having a good day - makes you feel ALMOST "normal" doesn't it?!! - trouble is I get all over excited and am up and down stairs, in and out of garden, bouncing around like Tigger feeling this is IT, I am DONE with this sh8t get really really hopeful but I think, from experience, we all know it doesn't work like that but am just going to be happy to take the good days and pray 🙏 the bad days get fewer and farther between.

Lx

They will lulu all of a sudden we're feel normal, it took my sister from beginning of March and she's just feeling herself now, her cough gone now as well ❤️

Oh amazing!! Did we know about your sister? This might perk us all up! If you don't mind sharing did she have any underlying issues? Did she have the breathing issues and mucus etc.? Any other positive info about her recovery I think would help everyone so much.

Am so pleased she is well again, that is such good news xx

Really strange is not the word for this virus I've been fine all day today felt good no tightness or other symptoms other than dry mouth but I got that most of the time I am thinking of staying awake all night and hoping it's gone well I can pray can't I Gary

You could keep one eye open all night and see if it creeps up on you!! I know what you are saying we all seem to have had a better day today - is that coincidence or is it the weather? Think Stuart said he felt pretty good today too. Let's hope tomorrow brings more of the same.

Just read an article in Guardian which mentioned amongst other things than in a survey of 151 medical professionals who fell ill in March 68 are still unable to work, a further 26 went back only to have to take more time off so we are definitely not alone. I think the long recovery message is definitely getting out there.

Lx

That's good lulu wish it would reach all our families rang my sister today said I was still ill said your joking told her I wasn't and gave her a couple of links to read I think she thought because I went back to work I was OK I'm not going back next week either I'm going to stay home till I'm OK Gary

She had the cough and fever aches etc breathlessness she was in bed like us for unwell for 5 weeks staying in no energy she started to slowly walk but couldn't go far as out of breath and always coughing, but slowly built up her stamina had a couple relapse diarrhea and then felt fluie again and tired, she kept drinking honey and lemon but her cough has only cleared up in last couple weeks and she says she feels back to normal.

I know my brother the same - doesn't bother asking me any more and am sure he thinks it's been stress related due to my mum's sudden onset dementia which happened just before I became ill. I have been signed off for two more weeks - I feel need a couple of consistent weeks of feeling as well as I have today before I go back. The minute you are back everyone will forget how ill you have been and you will be in the thick of it again.

Hope it's a good night for you.

Lx

Yeah it's a tricky one if we do go back and have a setback that's not good I work on the railway so its dangerous as well so I gotta have my wits about me and with this virus it confuses me at times I can't think straight you have a good night too I'm going to try Gary

That's brilliant, such positive news that must be very encouraging for you to know that and also for all of us! Glad she is feeling better now after all this time.

Lx

She didn't get the breathlessness and tight chest for as long as us but the cough went on til last week

My other sister had the same but she still gets the mucas and feels like something in her throat and my other sister had the tight chess etc like us and she runs everyday and couldn't do that. But we have thalassemia so our iron is low which also dosnt help, which she had come through on her blood test. But she recovered quickly, I was the worse one out the bunch and had the tight chest fir 6 weeks and breathing problems still. We all went to a christening at beginning of March and we all went down with flu like symptoms and bad coughs mine went for a couple weeks then bam couldn't breath really ill.

I've felt better today as well walked over the field for a hour, made a curry, sat in garden, went to sainsburys, chatted to neighbour, stayed up instead of going to bed, I'm coming off the diazepam slowly so think that's effecting me as well.

Night all hope you all sleep well.

Glad you've had good day too! Wow so you all got hit with it. Sounds like you too are on the mend now and so good you are able to cut down the Diazepam.

Chat tomorrow, hope you get a good night's sleep.

Lx

Yep you got to be fit to do that definitely need to be sure you are better x

Morning everyone had a mixed night but better than usual got more sleep than usual no sweats but dry felt the inflammation but took flarin and went back to sleep got a bit of fatigue but feel OK no tightness hope you all had a good night Gary

Morning!

That sounds pretty good - same here had good night just hoping for another good day for everyone. Am going into London to meet my son not seen him since February! Socially distanced walk and if we can find a safe spot not too crowded sit in park. Another semi normal day! Will wear face mask and bit nervous as so busy but will drive there.

Good article in Daily Mail reporter tested positive for C19 just had 3 negative antibody tests - interesting.

Have a good day.

Lx

That's good Gary

Article is about Ben Lazarus if you need to google it .

Enjoy your visit with your son lulu. Stay safe ❤️

That's good hopefully it will be a good day too went for a walk not too far this time still a bit fatigue good to see you got some time with your son have a good one gary

Morning Susan thank you hopefully we can have a great day too Gary

Will have a read Gary

Thanks

@I read the article from Ben lazarus just goes to show you they didn't have a clue back then I remember saying about matt Hancock I couldn't believe that he was back after a week it's a shame we can't get a message to him tell him to help anyone who is still having the same issues now look at the gp saying I'm surprised you came here where you supposed to go watch a movie he even realised he could have infected others as well that's the one thing that scared me I was thinking all that time I was ill didn't realise it was out of my system well not completely still winding me up now 😂 Gary

They are only just working it all out but from what I have read there is a lot of unreliability with the testing (swab and antibody) and a lot of research being done about T-cell response which would not show a positive antibody test result. I think if you have had this illness in any form other than the very mild version you know you do not need to have a test but whether you are protected against further infection no-one seems to know even if you have antibodies they do not think the protection lasts for more than 3 months same as normal cold/flu but I genuinely believe they do not really know yet - it is just too early.

Anyway off out now armed with hand gel, wipes, mask - nothing feels very normal about it but will be good to see my son.

Lx

To tell you the truth lulu I have lost all trust in the whole system of this testing if they don't catch you as soon as you catch it you come up negative then you get a nurse who says they are not sure they work properly then the second or third time you go down to the hospital you get told were sure you've had it but you're in recovery then you get the virtual hospital doctor telling you we really don't know enough about this virus but we are learning then telling you your on the road to recovery at 6 weeks then the gp says its safe to go back to work with symptoms and I knew there will be problems with the antibodies testing roll on the vaccine how they going to get that right go and enjoy time with your son and get everything off your chest 😂 Gary

Interesting article. The most important bit for me was that the guy recovered! (pretty sure that's what it said)

Feeling washed out, little ones are arguing and I have no energy to get involved.

Have a video call appointment this evening with a naturopath who I'm told has helped a couple of people with the virus. This is not my style at all as only ever done conventional medicine but hey, that's not helping now...

Will let you all know how it goes!

Go for it you got nothing to lose can only gain must be hard with the kids mine are a bit older and are with their mum I've had a good day yesterday and so far today out of breath going to the shops but managed to get myself sorted now it's not right that you have to deal with it on your own told my sister I was still ill yesterday gave her a couple of links to read not heard from her since and we are close probably doesn't know what to say Gary

Yes it can get difficult taking care of their needs when I can just about take care of my own...it's ok when my husband is around to help and not working...or when everyone is behaving! My oldest daughter is 12 and she's learnt to be really helpful and look after little ones when I can't, also doing some light cooking and baking.

Really important to get support from family or close friend (not just us virtual ones!) for a while didn't tell anyone what I was going through even my mum as didn't want them to worry but as it's dragged on have now told everyone and all been really supportive and trying to help, like this appointment this evening has been arranged by my husband's aunt! Even if nothing comes out of it nice to know they care and I don't feel so alone in the struggle. It can be hard for family members to understand what you're going through but keep them in the loop anyway.

Where are you all now? lol

Just wanted to check in with good news...

Those H2 blockers...whether it be real or placebo, have really done the trick!

Chest tightness and cough has been significantly improved since the 3rd day of taking them..And I mean really noticeably improved.

Am kinda bummed they are being discontinued end of month now as I only found 2 packs I could buy. Let's hope I don't need more than that though.

Been amazed at the difference though...7 days of antibiotics and chest was still tight as a drum, 4 days later and 3 days on the H2 blockers and, whilst I have the occasional cough, it's almost totally gone.

Hope you guys are all having a good weekend!

Res that's great!

I have my contacts abroad trying to get hold of famotidine for me (no idea how or if they can ship it but we will find a way!)

What brand did you try?

Hi res what are h2 blockers?

Just looked up I'm on lanzoprozole is that the same

Which one are you taking please?

Res,

Which H2 blockers are you taking and what symptoms have been relieved?

Jim.

Susan, lanzoprazole is different its a proton pump inhibitor. H2 blocker is usually sold otc and includes names like ranitidine, famotidine (aka pepcid ac). Ranitidine has been discontinued over safety concerns and now there is a shortage of famotidine because people have been using it as an alternative to ranitidine.

I have been using generic ranitidine.

It's being discontinued end of month but I found 2 packs stashed at the back of the pharmacy shelf at an independent chemist so I bought them both and he gave me them half price as clearing them due to the discontinuation.

He told me I couldn't get the other one unless have a prescription? I didn't realise Pepcid was prescription only?

Hey Jim,

It's helped me with cough and tight chest.

Of course it may be placebo or just coincidence in terms of timing bit whatever it is I'll take it to have a few days without a constant tight chest and having away!

Generic ranitidine cause I couldn't get Pepcid without prescription the pharmacist said.

However ranitidine will be unavailable from the end of this month too due to safety concerns in long term use.

I got the last 2 packs at my independent pharmacy and that was after looking in bigger pharmacies with no success.

OK thank you

I didn't realise either.

But did they have it? Not a problem to get your gp to prescribe

Thought it's just not available

Looks like on seeing my Doctor on Tuesday I'll be asking for pipcid ac.

Thank you.

OK thanks for explaining

Hey Dane,

I have been seeing a holistic doctor since last Monday and I have really seen an improvement. Chest pain doesn't come around as much. Supplements include SPM Supreme (natural antiinflammatory) and K-Force (vitamin D and vitamin K). This doc has had far more answers for me than the emergency room doctor and two MDs I have seen. AND I have been feeling better... can't argue with that! I still get lightheaded though. Doctor was very concerned that I lost 30 lbs (about 14 kg?) in a month and I am likely to need some time to get my strength back, but at least I feel like I am finally going in the right direction with actual guidance other than "stay home and rest". I hope this new doctor helps you in the same way.

Thanks for sharing that, very good to hear and so happy you're getting helped.

Going to speak to doc now so will be interesting to hear what she can offer.

It's a shame I cannot find SPM Supreme available in the UK 😭

Evening all res is that the same as zantac we have that I think just checked took it off the shelves as well Gary

Just checked no they have taken zantac off the shelves as well Gary

Evening all,

Just catching up,hope you all had a good day .

How did the video call go Dane ? lovely that your family are supportive .Mine have been so patient and understanding,makes a huge difference to your mental wellbeing.

That's great news about your sisters Susan,certainly nice to hear positive recovery stories.

Hope you had a lovely visit with your son Lulu.My girls and Grandsons are coming for a garden visit tomorrow ,its going to be hard not squeezing them all to bits 🥰.

Sounds like you've had a couple of good days Gary..did you risk a drink ?

I've had a couple of better days too,had a headache most of the day yesterday but it didn't stop me getting on .The Omeprazole seems to have helped a bit but chest still feels a little sore/ tight,My spirits are definitely up at the moment though without jinxing it 🤞 even managed some light housework without having to rest straight away.Feeling hopeful for the first time about returning to work in 11 days if I could just shake the hangover feeling first thing and get more walking in ...being rather optimistic i know but we'll see.Its so hard to judge being at home resting most of the time not sure where my limits are.

Hope you all have a nice evening x

Evening Dawn yes looks like your getting there finally felt a bit normal today spent some time with the kids and now back chilling didnt risk a drink yet I will soon I just want a roll of a few good days first then I will I'm going to try and get a late night so I hope for a few hours sleep yeah I know what you mean about pushing it you enjoy the rest of your evening Dawn think every one has called it a night Gary

Well I hope the good days continue Gary.I'm staying up a bit too,film on Bbc1 at 10.30 I want to watch...may regret it in the morning 😂.

Enjoy the rest of your evening x

OK dawn thanks enjoy your film Gary

Hi Dawn

Glad you have had a few better days too - was lovely to see my son and it was hard not to give him a big hug! So good to have your family visit tomorrow it definitely cheers you up and feels like things are getting back to some sort of normal. Stupidly we walked 9 miles - don't ask me how!! we were walking and talking and didn't realise!! Chest felt bit tight tonight but not too bad considering.

I have been signed off for two more weeks and really hope just gives me time to stabilise and have less ups and downs - need a couple of consistently good weeks - probably same for you so you know you are ready to go back as you say hard to judge when you have spent most of days resting - I do not have a physically demanding job and will be wfh but it is stressful and demanding so need to feel ready to cope.

Enjoy your day tomorrow, let's hope for some good scores!

Lx

Yes, they have Gary.

I only found some in a small independent pharmacy that were still selling their last stock.

Maybe go somewhere small rather than the bigger pharmacies.

Yes I think you could be right thats all it takes though to find something that work's that helps push us out of this horrible situation enjoy the rest of your evening res I'm chilling making it a late night so I hopefully get a lay in Gary

Hi all, had a really long talk with the holistic doc, she's put me on a strict diet and lots of supplements in quite high doses (quercetin, vitc, vit d, probiotic, zinc) and has told me not to budge from anything she's said (this is tailored for my specific needs and symptoms). Need to do a new shop as half the things she said I can eat aren't in the house...no more wood and honey or any of the teas I have, just green tea, camomile, fennel, lemongrass are ok for me. She also said I need to take lanzoprazole which i was a bit surprised to hear being that she's holistic but she said i need to heal the acid before anything will work. This is going to be interesting....

Dane,

Sounds about the same as my experience, just no prescription. We got into the diet as well. Only green tea. She took about 20 vials of blood from me to do "just about every test possible" and said she will use the results to see what I need to balance and strengthen myself so I never catch this again. It is supposedly a very thorough test. Then again, she could be a vampire and thought I looked sweet. Either way, I am looking forward to seeing what happens. This approach is totally new for me.

Hi Lulu ,

Wow 9 miles ! impressed hope you feel ok tomorrow .Glad you had a lovely time,I guess I'm lucky I still have one son at home ,at 18 and 6ft 2 he still gives a good hug bless him .

Yes I think I may be being optimistic about work but not ruling it out just yet but the last thing I want is to relapse.

Sleep well x

Morning lulu and everyone I've just had another good day and night hardly drank much water layed on my bed last night without my chest tightening first time normally have to be up straight so I'm going to go for a nine and I feel like lots of more positive people this morning feels like we are getting somewhere I'm glad you had a good walk with your son and your chest didn't tighten too much can see more high scores today I'm still a little tired but who isn't with the little sugar 😂 going to have a walk catch up with you all soon Gary

Brilliant! Really pleased Gary seems things are definitely looking up! I'm going for 91/4 this week! Ive definitely seen improvements this week with the cough and mucus am feeling more like myself but still not quite 100%right. My only symptoms are the cough mainly morning and evening but getting better, mucus and chest tightening. I only had one day last week Weds which wasn't too good and for some reason Friday afternoon/eve. My throat still looks red but has not been sore and doesn't feel as thick with mucus.

Hope everyone has seen improvements too this week. Think me, Gary and Stuart are all on week 12? Be good to hear from Stuart too.

Walking then off to meet a friend later. I do think having other things to focus on helped last week.

Lx

Yeah I think I may have gone a bit higher if I didn't have them two days relapse but I am now hoping on getting somewhere this week got two weeks to sort out little sugar before going back to work will ring them today and see if all OK enjoy the sun and have a good day Gary

Hi Lulu and everyone! I was on the next page, then I see all these posts I missed !! 😂 I've been up and down over the weekend. Felt fine one moment then experienced more chest tightness and coughing the next, especially in the evening. Between 7 and 8 it always starts to get worse.

This time last week I felt worse than now, so I have definitely improved but not to the levels I was experiencing when I had an 8 day period of feeling pretty good.

I did have a little glass of bourbon over the weekend which gave me two good sleeps and a wonderful feeling of release and relaxation. Amazing how alcohol can feel when you haven't had it for 10 weeks.

I'm very interested in getting my hands on some h2 blockers as Res mentioned. Such a shame they are being removed from shelves, would you believe it?

Let's see how this week goes. Friday will be week 13, I'm hoping it will be lucky for all of us.

All the best everyone.

Haha! If she was a vampire sounds like she had a feast with all those vials! Great you got to meet face to face that's the best and does sound very thorough. Have to say gives you the feeling you're finally do something to help yourself, but man, the diet...gluten and dairy free...never done that before!

Week 13 for me today, giving myself 8.5 as still having muscle pain with activity, but feeling positive.

Off to hunt for supplements and lots of tofu and fruit.

Have a good day all!

That sounds really interesting, Dane, really hope it helps you. Was she a particular type of holistic doctor?

Let us know how it goes

Hi everyone

some really good scores here 😃

I'm undecided at moment. I've had up and down week trying to get back to where I was before setback a couple of weeks or so ago. It's definitely better than the week before so I may go for 7 1/4

Had nice visit from daughter yesterday as she is in our social "bubble" as she lives alone.

I looked for those h2 blockers and you can get them on ebay, from America and taking several weeks to come! Hopefully by then we won't need them??

Have a good day everyone

She works alongside conventional medicine and focuses a lot on diet but deals with homeopathic remedies as well...if that helps...it's all new to me and not going to pretend I understand it all!

Morning Stuart I know that amazon do a powerful anti acid and reflux tablet they may work if you can't get the h 2 blockers might be worth a try Gary

Try the ones from amazon they might work till you get the h 2 blockers Joanne have a look Gary

Hi Gary, I think it has to contain particular medication to help with our symptoms, like famotidine. I have a supply of lanzaprole and omeprazole already so I'm good for stopping any acid problems but I think the H2 blockers have something that specifically affects the virus in theory. Hopefully. What are they called, the ones you saw on Amazon?

Oh OK I don't suffer too much with it on amazon they got a powerful anti acid and reflux tablet different flavours obviously not what everyone needs what about the famotidine is it not available on Google Gary

Hi Gary, no luck finding any so far although eBay has various others like ranitidine but I'm a bit dubious about buying meds from ebay.

Hello Res, what dosage are you taking?

OK Stuart don't know what else to suggest I've just ordered some more turmeric powder the tea seems to have been working and the flarin so going to try a organic turmeric powder see if they can finish the job then try and get the tightness sorted Gary

I've been taking 2 tablets a day!

Good luck with all that Gary ☺️👍

Ah thanks, what strength are they, 75mg? And do you take them together or at different times?

Stuart,

You'll be able to get pepcid ac tablets on prescription from your doctor.

Hooe your well and everyone else too,

Jim.

75mg yes, but Jim's right, if you can get the pepcid instead on prescription would try for that as that's the one from the study.

Hi Jim, I spoke to my doc who said she couldn't prescribe famotidine or ranitidine for me as they don't have a proven link. Plus they can't get ranitidine. I told her how frustrating it was that something so simple wasn't able to be given to me to at least try. When I told her I would be forced to buy stuff off ebay she said she'd speak to her colleagues. So let's see if she gets back to me. Hope you get better luck with your doc. All the best Jim, hope you're doing okay today.

Thanks Res, see my reply to Jim

☺️

Stuart, that's what my GP said when I asked about famotidine, didn't understand the problem, I'm anyway suffering from acid reflux but she said same, no proven link...don't get it.

Just got a call from the post covid hub, nurse spoke to me for a long while, very nice and suggested I go to various site pages for tips about my issues. Also said I should volunteer for patient research as my symptoms aren't classic respiratory. Might do that but happen to be having a bit of a difficult day so will have to wait. Day 1 of new diet not great, not feeling well enough to prepare veg laden lunch....hope everyone having better day.

Hello Dane, how frustrating. Was that since Res posted that you tried to get hold of some or at an earlier time? I understand that their prescriptions have to follow guidelines but as you suffer from acid reflux I don't see why they can't put it as that and let you try it. Let's see whether I get a bit of luck after she has spoken about it with her colleagues. At least it wasn't a solid 'no'.

I like the idea of volunteering. I am still waiting for my call from the hub. Did they give you a number to call or website?

Good luck with the new diet. 5 weeks ago I switched to eating fruit for brekky and a huge salad of raw vegetables and salad stuff for lunch. I've been loving it, surprisingly, which tells me my body wanted it as it certainly wasn't my usual diet.

Anyway I hope it works out for you. It has to be worth a try.

Hi Stuart and dane the hub will probably be ringing you soon Stuart she rang me lovely nurse mickey mouse she called herself went through quite a bit with me and then told me to help with my breathing go to asthma UK it will tell you how to deal with it etc so I came back to tell you I'm going to have a read through see if I can sort out this tight chest Gary

Cheers Gary, I'll keep an eye out for the call and take a look at the website.

Have a good day.

Asthma UK for the breathing breathlessness ask the nurses to help you find the way through I'm useless when it comes to things like that think the rest of my day will be sussing it out Gary I had to tell her that this virus makes me forget things she knows so she helped me get to the breathing exercises

Nice one Gary, thank you.

Think it was just over a week ago, been on the case with the famotidine since I heard they were trialling it for covid in the US which was in the news 2 weeks ago.

Hope you have better luck with your GP.

Nurse at the hub told me its on their website. You go to research and there should be a sub heading for patients in research or something similar, haven't checked yet. Go for it!

Def got a load of fruit and veg now in the diet, great it works for you, hope it works for me!

Today's (late) lunch is broccoli, courgette, butternut squash, carrot and tofu baked in the oven with a bit of soy sauce on top, waiting eagerly for it to be ready 😃

Lulu and I can't remember who else it was who got a negative antibody test, the Daily Telegraph have an article today about how you can fight the virus with T cells and doesn't put you in a vulnerable position for reinfection. Haven't read the full article but thought it would be of interest to you.

Hi Stuart,

I'll update you and everyone else when I've been and put it too him.

He'll find it difficult to say no after the conversation we had last week. However, as we all know now certain medicines don't mix and that's why I haven't taken ibuprofen.

Thank you for asking after me, today's been okay in the great scheme if things. Knackered doing anything, lump in throat, reverberations and mucus but other than that I'm tickety boo.

Oh, I bought a Peak flow meter from an online shop that's runs the world. Just played with it. My rate is right for sex, age and height?

Jim.

That was me. Positive Covid test, negative antibody test a month later. Doc said some young folks are not building the immunity.

So if you can, read the article. They are aware people don't show antibodies which means you fought off infection with T cells. Sounds like the the T cells being able to fight infection puts you in a better position and they are investigating how this works with this virus for vaccines.

Hi Jim and everyone. Jim I know we're on similar timescale with this and just wanted to check if you've been feeling more knackered than usual ? I know I have and It's so disheartening , just want to start feeling normal again !! I've got the internal shakes on and off not frequent and the dreaded mucus like you. I've also got swollen glands. Breathing hasn't been too bad though.

Gary,

I've just been through those exercises via the asthma uk site, which are worth doing but they not full expansion of the chest.

I was told, so this is untested that we needed to fully expand out lungs to prevent blockages especially in the lower lungs that aren't used when sitting and lying down. Theres a doctor on youtube via a BBC interview that gives advice on the exercise to help this.

Another point, I bought an acapella breath device from the usual place and I think it's helping mucus removal. In saying that I've only used it a couple of days.

Thanks Gary,

Jim.

Hi Steph,

Lovely to hear from you!

I concur with all of your post barring the glands.

I tire at doing the slightest of things and I know when I have as my right nostril becomes inflamed! Yikes, you couldn't write it.

The shakes really get to me, as I wake up numerous times through the night and I can feel them. They usually stop around lunchtime though. Oh high BP.

Try an acapella breath device from A. zon I've used for a couple of days and I think helps.

I know what you mean about being fed up it's dragging on. I'm sick of it excuse the pun.

Jim.

Thanks for info about holistic doctor, Dane

Hope you enjoyed your lunch, sounds lovely. I'm sure all that hard work will be worth it

Hi Jim. I hope you get some joy with your doc. I haven't heard back from mine so I presume the answer was no to a prescription.

Currently asking a friend in Spain if they sell famotidine otc.

I know it might be a long shot but I'm getting desperate.

I feel like I'm not that far from being well, it's just that I can't get the intruder out the door completely. I really feel like I have 'something' in my system that shouldn't be there. Maybe that sounds mad but it feels like I have an unwelcome secret resident.

Anyway Jim it's good that the peak flow meter showed you are normal, is that the same as this acapella device you mentioned?

Hi all

Bit late in the day for my scoring but I'm going with a cautious 8...hoping it's not the lull before the storm but generally had a much better week than last week.Still with a few blips ,ups and downs but feeling much more positive.

Glad to read some other good scores going in the right direction .

Had such a lovely day seeing my daughters and Grandsons,so emotional.

Thanks for the info Gary glad you had a good night last night .

Happy that the little drink helped with your sleep too Stuart.

Great score Lulu so pleased to hear .

Fingers crossed that the diet works for you Dane,I'm so much more aware of what I'm eating now not sure I could stick to something quite so strict myself but I really hope you feel some improvement from it ...I did have some tofu today though 😂,one of my daughters is vegan and she gives me plenty of advice on nutrition and healthy eating and arrived with a box of posh peppermint tea and vitamins ,my other daughter brought chocolates. ..both welcome 😊

Hope you all a lovely evening everyone x

Stuart,

The peak flow is a clemment and wright as per NHS fir measuring max flow rate.

Acapella device is a pep device that you blow in and it shakes the breath down into your lungs to loosen the mucus.

I agree with the feeling like theres an intruder I wished they'd crack on and find something thatll sort it.

Good to talk to you.

Jim.

Hi Jim

sorry things aren't too good for you. Just wondering about your breathing device. Is it easy to use? I've got one from Amazon but I

haven't got it out of the box yet! I've looked at the instruction manual though

Thanks Jim, I'll take a look. Speak soon.

Wow the Telegraph article is so interesting and hopeful. The bit saying they tested people who had the strikingly similar Coronavirus SARS back in 2003 and the T Cells generated back then are still active 17 years on and secondly those old T cells offer protection against the new Coronavirus. Such good news as there is no doubt I have had it so felt really confused as to why no antibodies - the specialist can see the residue and damage in lung which is consistent with having C-19. Seems if your TCells fight it off you may have better protection than just having Antibodies but no imminent test for TCells.

Glad everyone doing ok - worth trying alternative methods think there is a lot to be said for diet and supplements.

Glad the Hub are getting back to people too and are helpful.

Have a good evening.

Lx

OK Jim thanks I will check that one out the nurse from the hub put me into the asthma UK one gary

Hi Joanne,

Without a double entendre, I sucked it and blew it (sorry I couldn't help that)and went on youtube. There are a fee nhs clips which help.

Have a bash!!!

Jim.

Gary,

There are worth doing as well as the others.

I rang the hub last week and they haven't called me back yet.

Jim.

*they will get back to you Jim probably tomorrow because they told me that they are really busy can't understand why 😂 probably kept her longer than normal yes I've seen the doctors utube video thanks Jim enjoy the rest of your evening Gary *

Stuart, you've hit the nail on the head on describing what we have !! We've got an unwelcome squatter who doesn't want to move out !! It's reaping untold havoc and consuming us.

Jim thanks for advice about breathing device , if I get no joy through steam inhalation I'll get one too.

Sorry everyone for not scoring just don't feel much improvement atm.

Jim I'm so happy that your day included a bit of sucking and blowing with positive results, long may it continue 😏😂

By the way I got my call from the hub this afternoon too. I'm sure they'll come to you very soon.

Just need to find a way of kicking the ****** out Steph! I've had him/her near the door a few times but they always manage to get back in.

Hope you have a good evening.

Stuart,

Indeed my friend, I can't remember the last time I laughed, which I did writing that.

Stuart just adding the breathing exercises you let me and others know about for those who have just joined.

Guys,

If you use the old search engine with the below it'll describe three exercises for helping the old lungs.

lung health institute - how to increase lung capacity.

Jim.

Thanks Jim, sounds fun, looking forward to it 😃

Jo,

Don't forget to get a good seal with your lips or it won't vibrate!

Sorry I had too.

Have a look on g oo gle for written advice too.

Jim.

Thats the third time Ive laughed in ten old weeks!!!!

BRILLIANT Dawn 8!! so glad you have had a better week and yes I think still have a few blips I am the same but it is generally feeling more like old self physically and mentally. So lovely that you got to spend time with Daughters and grandsons too that is a real pick me up.

I've had a pretty good day after the 9 mile walk - was a bit worried! Walked 3.2 hilly this morning in forest then met an old school friend for a sit in park with a small bottle of Prosecco - am rattling through the small bottles of Prosecco at the moment 😉 have to say now doing more during the day am feeling a bit tired in the evening but love being busy again so probably just have to get a balance and maybe have a day of not doing so much in between.

I'm a bit lost on all the gadgets you guys are talking about but hope they help. For me the mucus is always bad in the morning and evening - no idea why but it is!

Lx

Hi lulu, glad to hear the the 9 miles didn't set you back today was a bit worried when I read that yesterday .Its nice to feel tired when you know you've kind of earned it though.

You'll need the the full size bottles soon Lulu 🍾🥂 😂

Yep bit lost with the gadgets too....thought I was on the wrong site for a bit with Jim's comments 😂 but hope they help.

x

Hi Steph,

Hopefully next week will be much better for you,I felt I plateaued last week but feel I've moved on a bit this week ,fingers crossed same happens for you x

Thanks Dawn, really want to get back to normal even missing work !! I've been googling swollen glands which I know isn't good as my mind's gone into over drive. It's like one thing gets better and this little "sugar" throws something else into the mix !! Normally with illnesses tiredness and other things gets better over the weeks but with this it lulls you into a false sense of security. It's the little "sugar" that keeps giving !!

Hope you're having a good evening xx

Lol - yep thought I was on the wrong page again when I read what Jim had been up to today, thought blimey things are looking up 😂 Actually really hope things are looking up Jim - it's been such a tough time for you.

Hope things move on for you Steph - it's so disheartening when you feel things aren't progressing but most of us have had weeks like that and still get them. I have that weird vibrating thing bit like someone has left an engine running - what on earth is that about??!!

Ruffio - definitely read the Telegraph article Dane mentions about TCells it's really interesting - and might be more reliable than the last article I posted at weekend from Glamour magazine 😂

My throat bit sore tonight it could be:

a) talking too much 😳

b) sitting on the grass (hay fever affecting these hyper sensitive lungs I have now acquired)

c) not drinking enough water as nowhere to have a pee in the middle of a field

d) basically totally overdoing it last few days

Who knows? Scored 91/4 and even at this stage still have plenty of choice from the pick n' mix selection of symptoms!

Lx

Hi Lulu, you do make me laugh....Yes you've described the vibrating thing so right, what's that about ?? The antibodies article is interesting. So taking the test is not so cut and dry to prove whether or not you have any. I've started drinking apple cider vinegar with water for my throat and mucus giving everything a go !!

Enjoy your evening xxx

Eugh.. apple cider vinegar and water that sounds tough but if it works why not?! Let me know if you think any improvement I may join you!

Lx

Morning lulu and everyone came back and stuck me on my back side yesterday sweats came back and earache Last night fatigue oh well gotta get back up again your never gonna keep me down day of rest meeting my daughter for her break try and be positive hope you all had a good night Gary

Hi Stuart what's the hub?

Hi all hope everyone OK, I've been drinking lemon in warm water each day and it is shifting the mucas, I'm going for a 9 again this week, been walking further and doing normal things and staying up later in evening s and started knitting again which not done for a long time.

Hi jim do you have asthma?

Morning! Thought you were over the sweats and wonder why the ear ache has cropped up? You don't think it is something different like an ear infection and not linked to this? Trouble is hard to know what's what and assume everything is linked to this.

Glad seeing your daughter and also think need rest days in between so try and take it easy today. We know there are blips and my throat was sore again last night think that is a sign i've overdone it one way or another.

Am off to see mum again so glad weather good otherwise couldn't do these garden visits then it is Prosecco on the Green Tuesday - blimey that comes round fast another week gone!

Hooe everyone is on track today and you feel better later Gary - it will pass.

Lx

Gary,

Big virtual hug from me pal.

Your chins up jeep going!

Jim.

Morning Susan,

No I don't have asthma.

Why?

Jim.

As your doing the peak flow chart or are they suggesting this for our breathing situation and mucas

That's great news Susan sounds like things really improving for you am so pleased! Is it just slices of lemon or squeezed lemon in hot water? Keep meaning to try this.

You can google Covid hub and there is a support number and nurse will call you.

Enjoy your day and so good back to your knitting!

Lx

Yes I know just got conjunctivitis as well I think my eyes are red I will battle on another day tomorrow will see my daughter and rest the earache comes and goes I had it bad about 6 weeks ago so it's part of the virus due some good ones enjoy seeing your mum and prosecco Tuesday Gary

Thanks Jim will keep battling Gary

I wanted to know everything I could regarding lung function and if there was a reduction in capabilities. However, not knowing my previous statistics it is hard to gauge, so I am working against the predicted results for age, sex and height.

We shouldn't really have to be doing all this and it should have been done by a medical professional but I feel let down by the system (not the people within the NHS).

I've asked to have a CTscan, further xrays, see a respiratory specialist and/or physio all to no gain.

Even simple tests as per peak flow/spirometer tests I've been told are not being done as there is too much risk to staff involved. I do understand that however there are numerous means of communication these days and therr is now PPE. We fo not live in the 70/80 or 90's there's the internet, skype, facetime etc.

Sorry off the soap box.

Regards,

Jim.

Sorry missed that question, I am charting the results. Oops.

OK I know it's sad we have to look into different ways of helping ourselves, I would have thought as the numbers come down they might be able to us all abit more, with proper checks ct scans etc as we were not hospitalised but all have been very ill.

You can use either lulu but it has to be in warm water. Oh OK I never knew about the hub handy to know.

Also lulu the lemon drink is good for your immune system.

Hi Susan, it's the post covid hub. It's been set up by asthma UK I think. If you search for post covid hub you should find them easily enough. Give them a call, they are trying to get as much info from people as possible about our symptoms.

OK Stuart thanks I'll look it up

Thanks Susan right at the very beginning my GP told me to drink neat lemon juice which I did for several weeks then started adding a fresh orange so now I have I orange and 1 lemon squeezed daily - but I will try your suggestion too.

Jim, I feel same when specialist was phoning me for consultations I had all my vitals which I had documented every day for few weeks - oxygen level, heart rate, blood pressure etc. and I was thinking what if you didn't have the money (to buy Oximeter, blood pressure monitor etc) or know how to do this - we have literally had NO support it is really bad. When I asked for my repeat prescription for Mucodyne the receptionist said I've asked the doctor and he said "if you are not feeling well give him a ring" - SO funny... felt like saying "well about two months two late and how about him giving me a ring knowing what he diagnosed me with and how long I've been ill"! I think they think well she is still here so must be OK - no idea how much we have all suffered it is definitely a case of if you didn't die you are ok there is nothing in between. My friend who's cousin was hospitalised has had the same - no support since coming home just struggling on with recovery on his own.

Lx

Yes definitely sounds like it is - I am enjoying the tinnitus that I acquired with this - don't notice it during the day but always at night.

Yep sending you positive thoughts Gary, hope you pick up today you do normally manage to bounce back so 🤞

Lx

Yes thank you lulu I will try and get on with it tomorrows another day Gary

I add spoon of honey to it and it is delicious. Tastes almost like cider 😉

Guys,

The post covid hub have called me, gone through the whole sorry story and said I am one of many.

I gave her a blow by blow account from the end of March including all the symptoms and treatments, medical interventions and exercises etc.

She wasn't impressed when I explained an ambulance never turned up but received a telephone call four hours later etc.

Genuinely surprised I hadn't been hospitalised but as I said you had to be at the brink.

The prognosis was 6-12month recovery and to keep up contacting doctors, taking sats, eating small meals but often, breathing exercises and gentle exercise but not going too far to cause a relapse.

The offer was there for assistance with claiming benefits once on sick pay etc, as they have an expert. If you call and ask they will ring back and help anyone through the system.

Jim.

Sue,

Can you make the lemon drink with jiff lemon concentrate and hot water?

Thanks for sharing Jim - did you find it reassuring talking to her? It just seems there is no answer other than time and getting balance between exercise and rest. 6>12 months seems to be the timescale people are now talking about.

Lx

Advised recovery time seems to be getting longer and longer 6-12 months is ages.

Thanks for sharing your conversation details with us Jim.

I'm sure the NHS will get on to cases like us eventually but please G-d we should all recover fully before that!

Feeling heavy on the chest and back today, hopefully it will go if I take it easy.

Had papaya for breafast today (according to new diet...along with blueberries and rice krispies in rice milk) and my lips started itching about half an hour after, they're still feeling a bit sore and itchy 3 hours later....weird.

A family member who lives abroad has managed to get famotidine, now have to figure out how it will get here!

Lulu,

Well, hard to say I've been reassured. However, she was very friendly, helpful but the timescales, guess work.

As she said no one knows much about it.

Without bringing anyone down and being realistic, on the first ambulance attendance at my home they said get past day ten, thats critical,

Next time a doctor said 4 weeks, the next 6 weeks.

As time goes on they just extend the timeline, as per the BBC article today about the twenty year old who is in the same boat as us. They estimate 6 months.

If it is 6 months, it is. I wish they could put a time on it, as do we all.

I am off to the quacks later, do I'll update ref their thoughts etc.

Have a good day,

Jim.

PS one thing she stressed was not to over do it but not be stagnant due to blood clots etc. Yikes!!

Hi everyone, thanks for feeding back Jim. It must've been quite emotional describing what you've been through and still going through. Thanks to you all I've just made a call to the hub and will await their call. Just sitting and waiting it out like our GP's say isn't good enough !! Yes news article mentions longer recovery for some, hopefully we get more help soon. Good luck at the doctors.

Steph,

Hope your alright "timeline buddy".

My emotions have changed over the past few days and I am becoming increasingly angry by how our cohort has been treated.

There was an interesting news interview with a doctor on the lunchtime news who has trialled a well known and vastly used steroid, which from tomorrow they are rolling out to all hospitals around the country, as there is no need to test its safety. They described it as helping the poor individuals on air or ventilation, however it must be some form of anti inflammatory.

If it is we might get a chance to have it.

Fingers crossed.

Jim.

Hi Jim, I'm ok think we've got to be, as sinking into depression won't help our situation. My brother sent me article a out trials and you never know our GP's might suggest next time we speak with them or pigs might fly !!!

Hello everyone 🙋finally found you all again 😃. Just want to ask if anyone experienced heart palpitations..... I've been doing ok for a few weeks , breathing not so bad and suddenly this little sugar throws a new one at me 😱. it started on Saturday morning and it felt like heart coming out of my mouth . So phoned GP and had a ECG today and some blood test ...finally!!! i will know results probably on Thursday . Hope everyone is having a good week . Diane

Hi Steph,

Which trial any more details?

Just arrived home from the doctors. Bloods taken, x-ray ordered as crackling on right lower lung. He wasn't concerned over it but in saying that it isn't his lung.

Changed my BP meds, sleeping tablets given wouldn't give H2 blockers.

His prognosis if this travels in line with other post viral fatigue disorders is a 12 months recovery.

I asked if he thought I'd be back at work within 6 months and he doubts it.

His main advice was not to over do anything to cause symptoms otherwise it's a backward step.

Happy days,

Jim.

Hi jim yes you can I use both and use warm water from the kettle.

Hi Diane yes we all have had the fast heart beats all through this virus

Hey Jim and Steph,

Yes the mental game is real. I am probably about a 7/10 physically, but mentally I am probably at about a 5/10 or worse. After going through all of this, I probably overanalyze every little tick or movement in my body that just a few months ago would never get a second thought. It is so easy to say "well just get over it". I have always been mentally tough but I guess now I know what people are talking about.

Hi Jim I think you should have been hospitalised as you were and still are poorly and be on observation ward for a bit 😘

Hi Rufio,

Thanks for that, appreciated.

How long have you been suffering?

When you say 7/10 physically. Does that refer to being back to normal?

Im week ten and cant physically do much of anything except wash and go upstairs a few times.

Jim.

Sue,

I should have been in originally but they never saw me.

Now its you can cope at home with help from your wife etc.

I'll get there though.

Jim.

Jim,

It has been about 13 weeks since I first felt a symptom and about 9-10 weeks since the absolutely miserable period. Yes 7/10 physically with 10 being 100% better means well enough to walk the dog one or two times a day for 15-20 mins, but then need to take it easy. I can only hold a conversation for a few minutes before I get really tired. It is probably mostly mental, as I said, because every little muscle twitch or sudden small headache makes me want to cease all physical exertion immediately, but my body can probably handle it if I let it. Current events in the USA certainly do not help the mental state. I know the physical beating I took is still there and am sure the extreme weight loss has something to do with it. I think I just need to build myself back up again. We have come a long way over the last few months, and remembering that usually helps.

Thank you.

Hi Jim it's the same trial same steroid but don't think it's going to work for us just as I'm just listening to daily corona update and they mentioned it !! I'm glad your GP is arranging further tests the more they check us out the better. I've just spoken to the lovely post covid hub nurse. So nice to have someone listen and not cut you off. She directed me to breathing exercises you previously mentioned. she mentioned lots of people with tiredness , breathing problems at our timescale. Not with swollen glands though so we had a chuckle about that. She also said to keep speaking to doctor if anything new happens.

Hi Diane,

Same here! I spoke to doctor today on phone to order some more heartburn medication (no, I can't have h2 blockers) and I mentioned that my heart rate had been really high. He suggested ECG so I've just been and had one and I'll get the results in a few days.

Good luck, but it does seem to be a common symptom even though it's scary when it happens. All the best 😃

Hi Rufio all this has knocked my confidence. Never suffered from mental health issues, but I am now with anxiety. Hopefully we all get through this without any long term issues.

Diane, yes I've had palpitations and irregular heart beat. Pulse has been fast and had high blood pressure but it seems ok now.

6-12 months!!! nooo

I do feel though that as we slowly get better physically, there's definitely going to be the mental side to recover from as it has really been a traumatic experience for us.

I'm worn out with googling stuff, buying stuff, then finding out that if you're taking one thing then you can't take others. And all the stuff I was taking for sore throat, phlegm etc, most of it is no good if you've got acid reflux! Eek

Hi Jim, thanks for the update. Sounds like you got a great call from the covid hub, I didn't get anything like the info you got from your call. No info about time scale, nothing about benefits or day to day procedures. Guess it depends who you get.

Must admit, the 6 - 12 months thing is a bit crushing, it will ruin my work if that's the case. I'm going to choose not to accept that! As you've said, it's guess work really.

It's great that you have actually been seen by a doc. Mine won't see me, even now. Wouldn't even allow me there to test my breathing to see if the inhalers they prescribed me were even necessary. I'm pretty angry about it all. 12 weeks and not a single examination or call from my gp to check on me. To annoy me further they have been happy to prescribe inhalers and antibiotics without a single clue as to whether I actually need them, but when I ask for the H2 blocker it's a "no". I know it's a long shot anyway but the lack of care just gets me so mad. I feel like they just want me to go away and not bother them. I did get exercises from the respiratory nurse and an Xray but it's been the bare minimum. Anyway, rant over, sorry everyone, just feel a bit frustrated 😖

Really hope you're all having a better day. Ps thanks for the pm's Jim. Will be in touch.

Think we're all feeling the same as you with the whole get on with it on your own.

Bless you Jim you will, in fact we all will and we're all be laughing about how bad we all were in a few months time.

Yes Susan, everyone's in the same situation. I feel a bit silly complaining really. I have had it easy compared to some.

Good evening everyone don't worry about complaining Stuart I did this morning had a better day can feel the tight chest but that goes with the territory now hoping for a better night tonight seems like a lot happening today I've given up with my gp they just fob me off mention covid 19 think the phone starts sweating in the receptionists hand and then she says hold on I'm trying to find a doctor available can't be that busy no one in there and when they do answer they Google it rant over hope everyone has a good evening Gary

This is the perfect place to rant...no one can stop you 😃

I've also got increased anxiety. Read an interesting article from a psychologist about dealing with some kind of panic disorder, found the exercises she suggested helpful even for mild anxiety.

It goes like this; you need to identify something that you really enjoy, it could be the view from your window, could be something you have experienced like a holiday...anything. Then you try to experience it as much as you can with your senses and feel in the moment eg. holiday on the beach, you try to remember the feel of the sand, smell of the sea etc. it's supposed to calm things down for you. My go to relaxation is eating a magnum ice cream (just imagine it cos not allowed now!)...I know, not very deep and meaningful 😃 but seems to work for me!

No your not Stuart were all fed up with no answers

A magnum ice-cream go girl yeah gotta give that a go I'll go with my mate getting married on the beach in Canada or scarlet johanson eating your magnum 😂 or with the kids at durdle door last year good idea Gary got me thinking now

Thank you Gary, you cheered me up. The image of the phone sweating is very funny! 😂 have a good evening yourself.

Your welcome Stuart you have a good one as well Gary

Hi Dane, that's all really nice advice. I just did a similar thing while I went for a walk in the field. Beautiful evening sunshine here, and while I walked I remembered some happy times with my favourite person. It certainly helps one's mood.

Must say, that Magnum sounds mighty tempting.... 😀

Hope you have a good evening.

It's all about the food (read: chocolate) for me now since I've started this diet!

Again, works for me. Even think of it while I try to get to sleep

I am not surprised at the time scale as specialist pretty much said the same to me - first time I spoke to him he said another 6/8 weeks which would have taken me to 4 months but when he had seen my CT scan he said 6/12 months. The only thing I would say is that might be the time to "fully" recover but things will be slowly improving all the time en route to full recovery and when you get to a certain point feeling a lot better than you currently do you will hopefully be able to start doing more of the things you enjoy, get out and about more and the anxiety will gradually lessen.

I agree with the balance of rest/exercise - I definitely don't think sitting around too much is good - it makes my chest much worse, think need to keep moving even if just pottering around at home.

Hope everyone has a good evening.

Lx

Great advice and do this in yoga to relax.

We will all go to sleep tonight dreaming of Magnum ice creams - I'm going for the Almond variety and definitely a full size one not a mini one 😂

Lx

Morning lulu and everyone a dry night at the office scarlet johanson and the magnum didn't make it much wetter still gave me headache and earache and puss around the eyes they are red could stop the traffic if stood by the lights feeling a bit better than yesterday morning fatigue wise so will have a walk to get the lungs moving then relax hope you all had a good night Gary

Morning all hope everyone OK today, there was a good piece from BBC new about long term suffering from virus look it up. The message is getting out there about us all.

Also cats claw is meant to be a good herb to take, but check with gp if on other medication before trying. Look it up.

Morning Susan been for a walk will have a read now Gary

Morning!

That doesn't sound too good Gary Ive seen others mention conjunctivitis but not been affected in this way. Hope it improves during the day and you pick up - sorry to hear the Magnum and Scarlet didn't help!

Feeling quite chesty - decided it is either because I do not do my walk on a Tuesday as it is Prosecco on the Green day or whether it is because I talk for around 4 hours non stop. I had a chesty day last Weds and have a feeling heading same way today. I personally think it is not doing the walk on a Tues - I feel the walking keeps the mucus from settling so much on chest - very depressing when you feel it is improving and I suppose it is but still there and still causing problems.

Lots of articles floating around now about recovery time and a guy on Twitter saying good news about this new drug which helps people in hospital but what about all the people still suffering at home with no support.

Also google: "Shocking" Nearly all who recovered from Covid-19 have health issues months later it is in the NL Times (Netherlands). Very interesting not too depressing just a representation of people like us.

Lx

Morning lulu and everyone I've been back on to the gp waste of time going to send a prescription through to my chemist for the earache I asked her for an mri scan for my lungs no was basically her reply so I got on to work and asked them my supervisor said give vallidium a call to help with my mental health nice lady thought I was ok bless her my work said would ring me soon think they must mean the weekend well I've put the ball in their court now see what happens besides that I'm having a good day Gary

Just read that article it's true its happened in Holland now it is happening here so like we all know we have been left to get on with it and most of our gps bosses are probably aware of things like this but because they are not feeling what is happening to us same let them get on with it Gary going to have to try and be positive and strengthen now still have to manage it and try to not over do it Gary

Well it's good you have prescription for ear infection hopefully it will clear up quickly. I honestly think they don't know what to prescribe as all these symptoms we have are the aftermath of Covid and it seems there are some common symptom i.e. breathing, chest and then there are specific ones which are slightly different for everyone - some days I feel worried that my chest will never clear but I have to be positive and looking back it is so much better than 4 weeks ago so logically that tells me it will continue to improve but I definitely still have my low moments as it is so slow.

Just done 4 mile walk with friend and she said you look absolutely fine now, you seem better, have put on a bit of weight etc. etc. and I was thinking yep that is ALL great BUT as soon as I get home I will have to cough up all the mucus and again later tonight do the same, my chest will feel tight and will have pains in my lungs but the problem is no-one can see how badly you are still affected and as we have said most people have lost interest and every time someone asks you how you are you can't say "well I'm much better but still have breathing issues and coughing, and mucus and tinnitus and ....and....and..." It is so tricky because you feel you need to tell people otherwise it is just assumed you are fine!

Hope your work medical are more supportive. I think my walking friend is my mental health support she listens to me but I'm aware it must be boring so am trying to talk about other stuff now!

Lx

Yeah I know what you mean bet loads of people who I ring think not again and wish I would do one started raining here my work probably won't get back to me so I'll just have to push on with it Gary

I think as were all walking etc and doing other stuff they think we are recovered it's only people who have had it know how we feeling, I been sitting on top the cliff tops watching the boats go by doing my breathing yoga very peaceful. I find when I'm walking it's alot better then when I'm sitting etc as well. Just sat in garden with my mum at hers as well she's 87 poor thing and living alone, she's starting to repeat herself alot now shame I can't have her at mine but not enough room.

Didn't think they would give you mri scan or a ct scan, it makes me cross as would put our minds at rest maybe?

that is exactly it Susan to the outside world we "look" fine but then if you keep reminding family/friends/colleagues you are still unwell makes you sound like a hypochondriac as you look ok - not sure what the answer is?!!

Wow sounds like you live somewhere beautiful would love to near the sea the air is so much better. We live right by the forest so beautiful walks etc. but lots of pollen etc around here.

Really sorry to hear about your mum it is so hard they need looking after at that age and so tricky with all this going on as you want to protect them too.

Enjoy rest of day.

Lx

Hi lulu I live just outside Brighton in a little village with one pub lol lucky got the Sussex downs and the beach and cliff tops to walk.

Yes think your right Susan just get on with it is for us Gary

Sounds perfect! After all this we are thinking of moving away from London but I still work in town two days a week - Ive decided to reduce my days again on back of this used to do 3 but from 1 July will only be 2 days and we are all working from home for foreseeable future.

Lx

Hi lulu or anyone whats the correct readings on an oximeter 95 to 100 for the first one what's the second one and what do you look for Gary

one is oxygen and the other one is heart beat,

Oxygen should be anything above 95 heartbeat should be as low as possible

Thanks maciek trying to work out if it goes below 95 is that bad or is it over 100 and what should the heart beat be like thanks Gary

oxygen never goes above 100

Hearbeat depends on many factors, like age fitness etc, google healthy heartbeat and you will see diagram

It shouldn't go really bellow 95 when you are sitting down, but if it goes beyond 90 you should call a doctor if you don't have COPD

Thanks maciek will do Gary

what's yours ?

Last time I done it 96 72gary

my HR was over 100 yesterday when I was worried about going for ECG

Also doctor says indigestion can make it higher, mine goes up after eating

Blimey that's not good I'm just trying now to get a ct scan done no help from doctor or work every man for himself Gary just heard Boris was involved in a car crash as well

will see what doctor says when I get results. He only suggested ECG when I mentioned my fast HR

Sounds about right my friend bless her tried to get me to change gps but obviously not taking on new patients now she is disgusted with mine I didn't realise how bad they were because I was never ill before Gary just a little dent in car for Boris

well I can't believe my gp doesn't even want to see me. The surgery was deserted when I went

yesterday

another lucky escape Boris

Evening guys,

Hope everyones well.

Knackered myself out this morning going for my xray. Nowhere to park, so had to walk. Not that far to be honest but I'm goosed.

Called for the results and theyre okay apparently, as are the bloods from yesterday?

Xray department looked at me gone out when they asked if I had been in hospital and replied no, after I had to explain I had covid in April. She even had to ask why I was needing another xray!

Anyway have a good evening.

Gary remember when you do your sats sit down and chill doing normal breathing.

Jim.

*I know it's a joke I've given up with mine it's only because people tell me ring your gp they will help you yeah right Gary

Mine all were Jim when I done mine the tests funny how we are not right though tried to explain it to someone from work who to be fair didn't just say see your doctor but said he will have a look to see if he can find someone to help so won't hear nothing for a few weeks 😂 thanks will sit comfortably for the Sat's Jim you rest up tonight Gary

Wow that article from Holland is incredible! 94% of nonhospitalized patients still feel bad months later?! Yikes!

Just got put out of work for another week. I am feeling a little better, but learned the hard way last week not to rush back. We need to build our strength back up.

Exactly what I done think that was about 3 weeks ago got to try and leave it as long as possible rufio work will always be there your health is more important yes that article hits home now we know Gary

Yep - surely people need to take notice now of the non hospitalized cases? Had a bad day today have totally been overdoing it this last week - always hopeful am nearly better and can get back to normal but obviously not - its very depressing.

Lx

sorry to hear that Lulu, I can't believe you've been doing such long walks, hope you'll feel better tomorrow. Did you mention the book The power of now? I've just had it from Amazon, it looks really good. Trying to keep positive. I've been on the Rescue Remedy today, it's got alcohol in it, so maybe I'll risk the wine soon...

Enjoy your evening x

I'm going to do 9-1 when I go back for a few weeks, and build up each week, but no sleep ins and working til 10pm, if it's to much ill go off sick again, I want to try it but my job is physically and mentally hard.

what work do you do Susan?

yes take care, don't do too much too soon

I'm a support worker working with learning disabilities people.

Evening Lulu and everyone, sorry to hear about your bad day. You are a few weeks ahead and it's only right you should be feeling better. This week hasn't been great for me either. The mornings I've got aches and pains body feels really stiff. Also feel spaced out foggy brain. As well as internal shivers and body throbbing. Jim I'm glad your tests were ok . Thing is I had the bloods and chest Xray too which were ok. But why do we still feel like s**t !! Think another GP call is in order , as something isn't right !!

Definitely not an easy job Susan. Better make sure you are 100%.

Yes I did - my son in LA recommended it and I read it when I was at my worst and it was definitely a turning point for me mentally - I appreciate won't be for everyone but he is a firm believer in how powerful the mind is and talked me into reading it! He kept saying to me you have to get on top of the anxiety before you can recover as at that stage I wasn't sleeping because of the anxiety - I was too scared to go to sleep - god seems like a lifetime ago but only about 7 weeks!

Glass of wine and chocolate has perked me up a bit!

Enjoy evening.

Lx

Yes that is a tough job you need to ease back into it gently. Is it 1st July you plan to go back? You definitely have to look after your health following this.

I am going to do 10.00>16.00 when I first go back and nearly went back this week but how I felt today it would have been a non-starter as have been exhausted all day. Days like today make you realise that you are not ready - sometimes I feel bad I am not working but today confirms I am still not ready. I am lucky as only work two days a week and as said earlier both of those days are currently working from home so probably have quite an easy option compared with many.

Lx

Hi Steph

Sorry you've not been feeling good - it just never seems to go away it's always lurking around and even if you feel well-ish in morning you can't guarantee you will feel well in afternoon and vice versa.

I was saying same this evening just worn out with feeling cr&p for so long - I can't even be bothered to phone GP any more as don't seem to have a clue - last time I video called a private GP (linked to my work medical) it was like I was a nuisance and she was waiting to have her dinner - unbelievable and I was paying for that!

I am self medicating tonight with wine and chocolate - best I've felt all day!

Take care,

Lx

Really glad test results were good for you Jim - think trips to hospital are both physically and mentally exhausting.

Take care,

Lx

Way to go Lulu enjoy as it's the only medicine that's working atm. I've been tucking into chocs too but saving the booze for the weekend.

I've been on FB this evening don't go on often and probably feel worse for that. I've joined the covid group on there and there's lots if people on there like us suffering too. Thing is doctors should be more proactive in ruling things out as we've been suffering so long. In normal circumstances if you had a cold/flu for this long surely we'd be having CT scans various tests etc. But they're just not doing anything. Someone on there mentioned autoimmune diseases surely they should be checking us for these.

Yes I'm looking to go back beginning of July I only do 3 days a week 20hrs a week but it's all unsociable hours that's why I'm only doing 9-1 for 3 days a week to begin. With. Normally do 9 hrs then a start at 2pm on a Friday and finish 10am on a sat won't be doing that for a while tho and prob won't do the medications to begin with, just stick to personal care etc.

Well another couple of weeks to improve so fingers crossed and definitely need to take it slowly at first to see how it goes.

Lx

Are there people been ill for as long as some of us - 3 months?

Lx

Yes unfortunately. It's only the 2nd time I've been on the group but it seems like they're a lot of people suffering think they calling themselves long haulers !! I'll be speaking to my GP again and asking if it were them would they sit back and accept the advice to ride it out !! I'm hoping to start back to work albeit wfh on Monday on a phased return. The GP's need to keep us on their radar but I know that's not going to happen we've got to be the proactive ones.

Morning lulu and everyone a bit better night not as good as yours self medicating wine and chocs so we have to be careful still have you been over doing it or just a bad one I did notice something last night ive been sleeping mainly on my left side so I don't get tight chest so earache started early so went over to my right-side and woke up about 4 with an earache that side no headache so took otomize which does ease it no fatigue so not too bad raining so day of taking it easy hopefully you all had a good night Gary

Hi Steph

I've been on that f'book group too, I don't go on social media much either. It was interesting though someone has put a massive list of symptoms on there, as a survey. It's a shock to realise how many symptoms you've had.

Hope everyone has a better day, and good luck to work returners. Yes, slowly and gradually does it x

Morning Joanne I remember my boss saying beginning of March you can't self isolate Gary you have to go sick because you don't have the symptoms of the virus still laugh about it when I think back now would like to know which one haven't had never lost my taste or smell perhaps little sugar is going to give me that as a leaving present in August Gary

Morning all,

Had a bit of a restless night. Woke up with sore throat, havent had that since 9th March!

I find the FB group is all doom and gloom much prefer this group at least we can also humour ourselves through it, much more helpful.

Gary you mentioned not losing taste and smell, did anyone on this group lose theirs at any point? It's the one symptom that doesn't seem to have affected us 'long haulers' maybe those who had that recovered quicker?

Morning dane not the sore throat return I've had that a long time but only comes back now when I talk too much its been okay last couple days so must be due a visit I've been trying to get a ct scan one of the hospitals said I need a gp or a consultant referral already asked my gp for one said no we are up against it when you're ill Gary

Hey Gary,

I know you've had it tough with the sore throats, hope it's gone for good for you.

I also feel my throat dry up when I talk too much, it's sort of a tired feel, feel it especially in the late evening. Today is proper sore throat just another symptom in the bucket.

Good luck trying to get a CT, have you tried speaking to another GP at the same practise? Might have better luck with someone other than your GP. I've spoken to 3 at my practise, they sometimes differ in opinions.

Mine are useless I always get put through to the same one I didn't realise how bad they were till I googled it I will try other options if I have to get her to help then I will I've asked a couple of friends who are trying to find out what they can do Gary

Sounds like we have a mixed bag this morning! Sore throats, ear ache - I can join the sore throat brigade again definitely think as Garry and Dane say it is caused by talking too much and not drinking enough (water that is!). Felt really rough yesterday and Tuesday talked solidly for four hours (I know..!!), drank Prosecco and very little water as nowhere to pee. Also sat for too long without moving around. I have learnt yet ANOTHER valuable lesson when you feel better don't do 9 mile walks, don't go out every day, don't think you are OVER it, don't talk with your mates for 4 hours solid and make sure you still get plenty of rest.

I think it is the inflammation I feel like I need "oiling" everything feels dry and raspy and unless keep drinking throat gets sore - I can still see the inflammation in throat anyone else looked down their throat with a magnifying mirror - mine is bright red has been since the start - goes off a bit during day but by bed time it is really inflamed again. I haven't lost sense of tast Dane, had metallic taste at beginning and have the weird bald patch on my tongue where the taste buds seem to have disappeared.

Hope people can get CT scans sorted - it is I think the clearest picture of what is going on in lungs - just had my invoice, the consultation and CT scan was 850 quid (in case anyone thinking of paying privately which for some might be an option I don't know).

Anyway, taking it easy today and hoping pick up again before the weekend.

Have a good day everyone.

Lx

Morning lulu I didn't really think about that looking down my throat guess it does not help drinking and talking too much women when they get together lol I'm relaxing today and meeting my daughter when she finishes work will start walking again tomorrow not going to push it though I suppose we have to try to work out a pattern of not upset it or perhaps it just says I'll let you have it today I can't work it out that's a lot of money for a ct scan I will still try and get one sorted Gary

Hi Lulu, I think not overdoing it when you feel well is an important point. I was told by the respiratory nurse that exercise was important but to not do too much and to do it on alternate days with a rest day in between. She also said to continue with lung exercises to build up lung capacity.

I too get knackered from chatting. I would never have thought I could be so affected just by talking to someone for 20 minutes.

I had a good day yesterday, almost normal, but when I went to bed the breathing difficulty started again. Chest aches today, which is a tad disappointing.

Completely understand you when you talk about feeling dry. I feel like I'm breathing through dust sometimes. Week 13 tomorrow. Yayyyyy!!

Hope you and everyone have a better day today. Best wishes.

Hey Dane,

A few neighbors and coworkers lost their taste and smell but all recovered after just a few weeks. No other symptoms. Maybe that is the milder version of it...?

Hey Stuart,

Yes I also get wiped after small conversation. Also walked longer than usual two days ago and I have been paying for it ever since.

It definitely is Stuart - I am one of those people who never learn - every time I over do it I think I am not going to do that again and then do exactly the same thing a week later! I think the rest day in between is key - I think I'd put my lungs under too much pressure and were inflamed again yesterday and last night. Yep I feel like breathing through cotton wool - it's such an awful feeling. Started feeling a bit weepy and angry last night it just seems so unfair - don't get me wrong I know it could have been so much worse but it could have also been so much better and we didn't catch this awful virus and spend all this time struggling through trying to recover without any proper support. On top of that my antibody test came back negative so now people say "OHH so you DIDN'T have it after all" then I feel the need to go into a BIG explanation of how ill I've been and what else could it be and just because no antibodies doesn't mean you haven't had it blah blah blah....have you heard of Tcells... blah blah ... also the tests are not accurate blah blah .. to hear "well my neighbours sister's husband's daughter's boyfriend had the test and she WAS positive 🙄🙄 it's SO boring!! At least if I'd had antibodies people would just accept it and that would be that.

Lx

Yep in case you hadn't gathered I can talk for England and so can most of my friends!! Take it easy and enjoy seeing your daughter. It is a lot of money and you shouldn't have to pay so hopefully your doc will sort out but think they try and fob you off with an X-ray for as long as they possibly can so you will need to be persistent - make that phone receiver sweat in her hand 😂

She's already said no lulu I'm thinking even if I do have it done its not going to change anything at this later stage so I feel I will just go with the flow and try to get back to normal that's what they call it and hopefully it will be OK I had three xrays so I'm hoping if it was not good they would have picked something up my work may come through yet and then I will have it done Gary

Crazy isn't it? One of the most surprising things that has happened to me is after laughing hysterically one time I had to tell my friend (who made me laugh) to stop, as I started gasping for air and having chest pains. That's when I knew I was really not well.

Interesting....the covid patient forum very scientific investigation may have found a link between between loss of taste and smell and illness time frame....:) researchers seriously need to log in!

The resting issue is on my mind all the time, I hardly walk outside and any small chore I do is covered with a rest right after, my whole day is filled with mini rests. I can really feel that my symptoms could easily worsen if I am too lax.

Having said that, a new thing for me is that between 1-2pm every day I get this crazy weakness, like I'm about to faint and limbs feel trembly. Have asked holistic doc if I can add sugar to my tea, maybe the no sugar, gluten, dairy, food... diet is not giving me enough energy. Waiting for reply.

Lulu, must be so frustrating for you having to go through all the details of how you can get a negative and still have had it, you need to record a speech and just play it back to everyone! I'm also fed up of having to explain myself, so many people have no idea! And I'm bored of resting...

Completely sympathise Lulu. A few days ago I felt so frustrated and angry about all of it.

I've decided to ignore all the time scales for getting better (as it seems to be mostly guesswork), and concentrate on being better tomorrow, and if not tomorrow then the next day and so on. If I think about 6 months and more then it becomes very hard to take.

I'm not looking forward to taking an anti body test either for all the reasons you've described. If I show as negative then what does it mean, and all the people who will say stuff. Ugh. I feel for you.

If it isn't covid that you/we have had then what is it? What have we all contracted within days and weeks of each other? Bit of a coincidence.

Yes it's frustrating. Anyway let's hope for better days soon. Take care.

From what you have said over the weeks and from having 3 clear x-rays I'd say you are probably similar to me and there are issues that only time and the lungs healing from inflammation will put right. If work offer to pay that is a different matter. I have been thinking whether I need to see an ENT specialist about my throat but again if I think about it logically I think it is all down to inflammation as most of time it is not sore only if I overdo it or don't drink enough water during day.

Lx

These test are not accurate, I didn't lose my taste or smell my sister did and she recovered after 4 weeks, what blood groups are we all I'm A positive. They say the t cell testing would be more accurate as well. I'm not feeling so hot today have been for my walk tho. My hubby sprayed fabreze on all the furniture not sure if that's affecting me?

And my backs hurting now I do problems with it tho.

I get that weakness around 6.30 every day when thinking about cooking dinner (that is not a joke!) I literally can hardly stand up and when I was at my worse this was when the downward evening spiral would start.

Yes carry on resting - I have just done a 1.5 mile hilly walk a bit of housework this morning (thinking of asking our cleaner if happy to come back but feel need to tell her about me being ill and then pretty sure she won't want to come into house - another dilemma!!). It could be the lack of carbs etc. making you feel more tired with the new diet.

I need to just work out a short speech and stick to it!! Me too, SO SO bored - bored of resting, bored of going for a walk, bored of taking Mucodyne, bored of coughing night and morning, bored of taking loads of supplements, bored of Oximeter and blood pressure monitor (actually stopped using those last few days which is good).

What do they say about link to loss of taste etc. does that show more likely to be mild or serious case?

Lx

Yes or too much talking or prosecco I'm sure we are due for the inflammation to start easing I've tried everything and I feel it is a lot better than it was two weeks ago Gary as for the throat I think that will go with it with a bit of luck

My friends only see me for a few hours here and there normally in middle of day (which is my best time) and all think I am absolutely fine - I look fine, I sound fine then I get home and crash and can hardly get off sofa!

Lx

You sound like you have more energy than me Lulu, I might walk halfway round the block, that's it!

Sometimes when I'm feeling better in the morning I will already get dinner ready because I never know how I'll feel later and if that doesn't work...there's always fish fingers and chips.

The smell and taste link is just my own wonderings nothing actually proven.

I'm A positive too!

Anyone else know their blood group?

Also when really ill my pupils were really small that means virus did anyone else have that?

Hi all, yes I think there is a link with loss of smell and taste and quicker recovery. I know a few people who've had that and fully recovered, unlike like us I've never lost my taste or smell.

I've got a call with the GP soon , this must be into double figures now. Try to speak to different ones as I've not found the right one yet !! I'm going to ask him to imagine being in my shoes what would he be doing ??? I'll be interested in what he has to say. Feeling like I'm getting worse and it's nearly 11 weeks. So tired everything is an effort and breathing isn't great again. Hope you're all ok xx

Haha sometimes just looking at the world around you is better research than surveys and polls involving strangers you never meet. What we used to call "common sense" way back in the day...

Oh yeah, common sense, what's happened to that?

I remember when the UK announced loss of taste and smell as official symptom, when was it, about 2 weeks ago?

We were like...GOOD MORNING!

Following my GP's call, guess what he's arranging an antibody test and bloods as I asked if the virus could've triggered an autoimmune disease. Will keep you all posted xx

Let us know how you get on Steph - ask as many questions as you can!! The only thing is as I have said before I think we know more between us than the doctors. I have to say the inflammation for me has been worse this week even my tongue feel sore 😕

It might be fish and chips for us tonight too Dane! Just had a work call and feel wiped out.

Stuart, I am 100% certain I have had Covid (as I'm sure everyone else is) I've never had respiratory problems ever, not even had a bad chest infection, so what are the chances of it being anything else at exactly this time and lasting this long. It's just that no-one else has read so much as us about the illness and unreliability of testing and don't realise that you can have had it but still get a negative antibody test for many many reasons!

No idea of my blood group but I think I am one of the bog standard ones not one of the fancy ones.

Lx

Agreed Lulu not many people get it. It is frustrating. Lots of folks are telling me it is mostly anxiety. I know some of it is, but the anxiety isn't coming from nowhere. We still feel the physical effects of the recovery. Sorry it has been a bad day for you. I have had a few bad days myself. I just hope I am better by the time of my wedding at the end of the summer. Surely this cannot last that long...

Totally agree with everything you've said Lulu. I've never had breathing issues before all this. The doctor was the one to suggest a test as he wants to know if it's not covid could be something else. But like you and i know it's defo covid. He seemed shocked to hear I was still suffering so will defo be speaking to him again. This week has been difficult but hopefully we all get better soon. Going for the tests Monday morning. Rufio you've got something lovely to aim for positive thoughts. Just keep taking one day at a time and you'll get there. !!

I'm O.

Jim.

Steph,

I'm another having a bad day today. Can't move the mucus, tired with a low mood.

Trying not to drink more than 2 litres of fluids as advised by my doctor to raise my sodium level.

Two of my local GP's have done all the tests bloods, urine, sputum and xrays and said to find out if its anything other than covid especially seeing Ive had three tests all negative.

Each time Ive sat with them they've said its obviously covid. It'll take time etc.

The top and bottom of it, they've no idea, which is understandable, as its a new virus.

As with your GP the last one was gob smacked when he called me and I said it was week ten. His words, this is dragging on we better see you to investigate if its something else. No sh?t sherlock!!!!

Sorry getting angry again.

Hooe you have a better night.

Jim.

Good evening Jim and everyone that did make me laugh no s..t sherlock I've been through the same thing with a lot of people because they haven't had it even a lot of people who I know say to me see you soon for a few drinks Gary well actually you won't why they ask well I'm still I'll and I really don't fancy coming out till it does one some people who do know what it is and haven't been out at all my mates mum hasn't and won't because she is terrified also forgot to ask everyone do you all forget things with this like you will be doing something leave it and do something else then realise after? Gary

Hi Jim ditto with the mucus it's a lump at back of throat that won't budge. Yes tiredness and mood maybe it fits in with the timeline of this thing!! I think the virus has left us but has triggered something like a side effect. We're the unlucky ones. Do you know what bloods you had taken? I'll be asking what the doc has requested on Monday. I'll be curious about antibody test after Lulu's result. You've got more tests haven't you?