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

Lulu,

Thank you very much for asking all those questions and giving such a comprehensive write up.

It's all very positive and uplifting.

Take care and if I think of anything I'll be in touch.

Jim,

Wow Lulu, that's great. Thanks so much for writing it up and getting so much info. If I could give you a gold star I would. Brilliant.

A big hug to you.

That's great news lulu thanks very much this will help lots of people shame most of our gps were not as helpful will go back and read them again now my brain didn't take it all in the first time 😂 just a quick question lulu you Said you were at 8. 5 post viras he didn't say when post viras was did he? Thanks Gary

Hi Lulu , thanks for feeding back very much appreciated. Looks like more time off sick but if the weather stays like this it's all the mire bearable. Hope you're feeling ok after speaking to the consultant.

Thanks lulu great information 💜

You are real star Lulu, thank you!!! This is a boost we all needed today!! There is a hope.

Wow thank you for the helpful post. Finally a doctor who seems to give a damn.

I'm at week #11 now.

How is your energy level? Maybe I asked this before.... For me I can go about daily activities no problem, shopping, cooking etc.... Everyday I try to do some exercise including walking, light strength, cycling (one a week I go on a longer one around 25km). I'm working on average 3 days a week in the office, but I do come home feeling like an empty battery.

Probably also asked this as well. Do you have trouble sleeping? If so, has the doctor recommended anything? I can't stay asleep for more than 2 hours these days. Last night was terrible only managed around 5 hours. Between 0300-0500 couldn't sleep at all.

Thanks Lulu

I realise it's in response to your set of symptoms and clinical picture, but reassuring none the less. Really pleased for you.

Mare xx

Also I'm wondering what is the doctor's definition of "recovery" out of the options below:

1 - The virus is no longer in your system. In this case I guess we are clinically recovered.

2 - You have energy enough to look after yourself with the essential daily activities.

3 - You are 100% back to your normal previous level of energy and feeling 100% like yourself.

I feel the doctor thinks it's somewhere between 2 &3. For me to reach #3 I fear it will take a very long time.

For me personally I think I'm better than #2 but nowhere near #3.

I forgot to add that I saw my GP this afternoon and and he gave my chest a good check and it's clear, which is great, but doesn't explain my rubbishy breathing over last couple of days. He said I'd be very likely having a CT scan as part of my Resp specialist referral, so will see what happens with that.

Would be lovely to have a great big party once this is over. Mind you, we might just want to try and forget the whole thing and put it behind us!!

👍👍🌸

Thank you so much,very informative.

Think you have taken on the role of a Mother that we all need at the moment.

Very grateful to you x

Thanks so much Lulu for giving us all this information, it's really reassuring 😃

Mkqq, very good questions. I do wonder the same things.

No problem, just hope it has helped everyone feel a bit more positive.

Mkqq - Didn't ask about sleep but from my perspective it depends how my symptoms are before bed and how relaxed I am and varies night to night dependent on cough and phlegm and anxiety. We also need to remember that we are not being physically or mentally active compared to "real" life so that doesn't help with sleep.

Regarding recovery I think he was saying am on road to recovery because doing a lot of "normal" activities and exercising but will be another 6/8 weeks for the chest inflammation to settle down. Maybe we are a #2 now but in 6/8 weeks will be a #3! We need to be patient! We all know we have improved but maybe just seems taking too long but look back at where we were 3/4 weeks ago, we are getting better.

I am always up for a party - it might have to be a virtual one! How about we score ourselves each Monday on a grade of #1 to #10 (#10 being fully recovered) so we can see the progress over the coming weeks and state what your main symptoms are - could do it for next few weeks. Just an idea - I will post mine on Monday and if anyone else is interested join in if not ignore me!!

Enjoy the weekend and the sunshine x

Thanks again!

Another remind for everybody to get your Vitamin D levels checked. It seems that this has a major impact on the severity of illness and length of recovery.

I was found to be very deficient 2 weeks ago. If I was not deficient then I might have been fully recovered many weeks ago.

It's one of the pitfalls of having lived in NZ / Australia all your life and moving to Europe all of a sudden. After 1.5 years it hits you like a truck.

Thanks for all the info Lulu. That was incredibly thorough! I would say I am about a 6/10 right now. It has been a pretty good day so far but I'm not going to push it. Hopefully in the coming days I can bump that number up.

Brilliant news!

Thanks for this!

I had a heart scan this week and wearing a heart tape as we speak.

Am really hoping that as I'm recovering though that results will be back to normal.

Still have some swollen lymph nodes in my neck but hopefully they will ease too in time.

God speed everyone!

Hopefully this is behind us all soon.

Sounds like a plan to me lulu virtual recovery plan got two days to work on little sugar hopefully as I thought I was closing in on the high numbers I will still be don't think I will be jogging down the m1 anytime soon though Gary

Pleased to hear it 6/10 pretty good but yes room for improvement by Monday! Will post mine then and hoping we can see weekly progress.

Forgot to ask about taking Ibruprofen which is really annoying as I feel it would help me but still feeling nervous to try it - anyone else taking it regularly now and is it helping?

Hi ,

sorry to be nosey but did you have trouble with your heart before .

Only I was diagnosed with bradycardia asymptomatic last year but I've been worried since this virus that there may be damage...mostly because the ECG the paramedics carried out said Abnormal ECG unconfirmed * Widespread ST-T abnormality may be due to myocardial ischemia.

Going to speak to my doctor Tues and see if I can get some tests and bloods ect.

Hoping your results will be normal .

Lulu,

I don't know whether you'll be able to answer this but at 7 weeks am I classed as in recovery?

I know I've improved over the past couple of days but if I lived alone I wouldn't be able to do all the daily tasks required.

Jim.

Hi Jim

He seemed to be saying that after this amount of time I was post virus and now "just" need to recover from the symptoms the virus caused and for me those are mainly the inflammation of lungs, cough and phlegm. He seemed very confident that things will improve as the body heals. You are not far behind me (I am coming to end of week 8) hopefully you will start seeing more improved days over the next week or so - I think I have improved quite a bit during week 8 (please pray I don't jinx it!). I am not doing all the daily tasks, my partner does a lot, but I am doing a lot more than I was and able to walk every day. I started on the flat and just a short stroll but have done 8,000 steps today, last Friday I did 3,685 ,week before that 2,532 . At worst was only doing about 700 steps a day so looking back I can see the improvement. I also have to rest in between tasks and he said just listen to your body, if you feel breathless or heart racing rest until recover. I tend to do things in morning and rest in afternoon. He didn't seem at all surprised at symptoms I was telling him and was generally very upbeat.

On separate note, my brother is an acquaintance of Dominic Raab and was on a call with him tonight and mentioned to him about me and all the people on forums struggling at home with this awful virus with no support and desperate for more info on recovery and the long term effects of illness. Dominic has asked that I email him to highlight this and he will see what can be done to provide support.I will do that over the weekend and will post the email on here and any reply I receive.

Take care Jim, it will be another good day tomorrow x

I would say that you are. We are all in recovery, I guess. I know it doesn't feel like it but we have to be patient. Don't stress too much and rest. I believe we will get there at the end.

Thank you Lulu.

I'm intrigued in his reply.

Please keep us all updated.

Jim.

Morning Jim

Hope you had a much better night?

Why were you intrigued? Just wondering if you could share why?

Thanks

L x

Morning Lulu,

I'm intrigued in Dominic Raab's reply to your forthcoming email.

Last night Lulu I went to sleep around 11ish, woke at ten to one and slept again between two and half past four, so five ish hours. The hood point was my nose didn't block! Every cloud etc.

I've been up ever since. Poor in relation to being a shift worker who can sleep for 8 hours after a night shift.

I have made the bed, my breakfast(first time in 51 days) and done the breathing exercises that Stuart disseminated.

Hope your well.

Jim.

Lulu,

I've just read my reply and realised I didn't answer your question. Insomnia reigns!

I'm wondering if his reply to you mirrors any changes in our predicament in relation to accessing medical assistance and press coverage etc.

One of my many failings is failing to proof read my written words.

Sorry again,

Jim.

Ha! No problem Jim thought you were referring to specialist's response about being in recovery!

I am definitely going to highlight recovery times so he is aware how long people are needing to be off work and this should be acknowledged and announced by Gov so employers are also aware will also mention about medical/mental support other than phoning GP or 111 there needs to be a support line.

Brilliant!! another step forward with breakfast making take a rest and maybe have another couple of small goals for rest of day? You definitely seem to be improving x

Lulu,

Thank you for the encouragement, I can't express how much it means.

If the wind ever abates I'm going to do a couple of laps of the garden.

If I went out at the moment with the weight loss I'd probably end up north of the boarder.

Jim.

Morning Jim and lulu I had quite a good night wasn't so dehydrated in the night so maybe either the sos or the horrible drink of lemons and rock salt are finally starting to work I hope so not too much phlegm either not sure if the throat is getting better or chest and lungs don't want to push it today incase will stick with the sos today take some gargle salt water couple of paracetamol and see what happens I will have a walk round the park hope everyone has a good day Gary

Morning Gary,

Good news at your end then!

Enjoy the walk in the park.

Jim.

Morning Lulu, thanks for taking this forward on behalf of all of us sufferers. I know my manager is aware of slow recovery for some with this sugar, but that doesn't mean they all are. It would be good if it were highlighted more and people don't think we're all imagining it or pulling a fast one !! With regards to 111 if you no longer have a cough or fever or the new symptom they don't treat you under covid. There should be an option for ongoing covid symptoms. Hope we're all going to enjoy the Bank Holiday weekend as best we can.

Good point Steph I will mention that about 111 - as no support there if you do not have the cough, fever or new symptoms. It will take a while to draft email as I don't want it to be too long and waffly - I just need to get key points across.

Jim, yep a couple of laps of the garden definitely in order even in the wind! Will blow those cobwebs away and can tick off another goal for today!!

Gary, really glad you had a better night. Doc told me to drink neat lemon juice right at start and it definitely cuts through phlegm and remember the specialist said yesterday that the phlegm will gradually decrease as we improve - mine is doing same - its mainly in morning now after lying down all night. I then start worrying why I haven't got any phlegm - ha ha - are we EVER going to stop worrying - I am really trying but think this whole experience has traumatised me!

Enjoy your day everyone!

Lx

I've found your advice very helpful Lulu. Thank you. I had a whole week of feeling better last week at 7.5 weeks, like Stuart and then celebrated with wine for the first time in a long time last weekend and my breathlessness came back on Monday. ( not bad though in comparison with several weeks ago) I guess if our lungs are still inflamed, the alcohol might inflame it further. Lesson learnt! Generally, I feel that I am in a lot better place than where I was though despite ANOTHER set back. I can see improvements. Now bang on 9 weeks today since it started. As a normally very and possibly over active person, I'm still frustrated, but I have started going out on short bike rides and very slow short jogs every few days which must show an improvement. I'm still left with the cough too and a bit of stuck mucus ( that had seemed to have gone away) seems to be lurking a little but hoping that we're all heading in the right direction.

That's brilliant Cat, yes think from what specialist said it will take time - I am 9 weeks on Monday and also used to being hugely active and sporty so it is really tough - luckily I am a swimmer and obviously can't do that anyway at moment so not quite so painful for me. Have been increasing my walking every day and do more hill walking and managing quite well. Specialist also said the mucous will gradually decrease as the lungs heal.

Maybe if we had been told the recovery time for mild/moderate cases could be this long we wouldn't have worried so much but to be fair I really don't think anyone knew much about this virus when we got sick and I still there are quite a few people don't realise it can be this serious even without being hospitalised.

Here's to continued improvement and back to fitness.

Lx

Thanks lulu I went for a walk round the park come back only hot to Trot because the lemon juice and rock salt felt like it may have helped I have done another one added sliced orange as well I hated the dehydration I will salt water and gargle twice a day if needed take paracetamol thanks again lulu your advice has been great walk before you can run is my motto now and I will run round that park in the near future and hopefully everyone here achieves their goals Gary

Yes I think that you are right. It's been the fear of the unknown that's made the whole experience more stressful. I definitely do keep jinxing myself though because every time I tell someone that I'm feeling better, I go backwards again...! I must admit I have given up on the steam bowl, probably wrongly, because after weeks of doing it, it was making me focus more on being ill- the sight of the same bowl was turning me green! The mind is a powerful thing, both to our credit and to our detriment depending on how we play it. Walking is very good still, both for the mind and the body but hoping that you're swimming again before too long. Let's stay positive everyone and wishing everyone back to their normal selves.

Did my walk today but still puffy going up the hills, hope it gets easier soon

I am 58 tho

I'm sure it will Susan. The specialist said just be aware of heart rate and if feels too high stop, rest, recover and then go again. I did a huge hill today and felt pretty good - it seems the more I walk the more Phlegm I can cough up. I think maybe sitting too long is not so good as it settles on chest, the same principle as when you wake in morning and I think that is why if you sleep well sometimes feel worse as haven't moved in night and everything is settled on chest. On a bad night when have been up and down chest feels a bit easier in morning as been moving around - just my theory!!

Cat - I know exactly what you mean about the same bowl - there are things in this house which I now associate with being sick - certain clothes, certain foods, the electric juicer!! I also used to have a bath at night to relax but had so many panic attacks in the bath just before bed as felt sometimes I couldn't breathe properly it has totally put me off baths - it is all the associations! Another few weeks and hopefully the memories will ease.

Take care.

Lx

Thanks lulu I will try the neat lemon juice can't be as bad as with rock salt I have had a bit of appetite come back today wish it would have come yesterday my daughter ordered a take away Chinese might give the soup a miss for a while 😂 just heard the popping in my nose come back while I'm texting this strange had that from the start tried Neil meds obviously no good gary

Another good sign Gary if appetite is coming back! Hope everyone has had a good day.

Lx

Here we go... have sent this email to Dominic Raab at his personal email address. Let's see what the reply is. Hope you feel I conveyed our message accurately.

Dear Dominic

My brother, XXXXX, gave me your email address, I do hope you don't mind me contacting you directly. I know XXXX mentioned to you, on a call last night, that I have been ill, at home, for the last 9 weeks with Coronavirus symptoms along with thousands of other people. I was not eligible for a test at the time and by now would expect to test negative.

The message from the NHS and Government has been that people with a mild/moderate case of C-19 should be expected to recover in 2-3 weeks and for severe/critical cases 3-6 weeks. It seems there has been a whole group of patients who have fallen through the crack having been very ill at home, with no medical support, and taking far longer than these publicised times to recover.

In desperation for support I joined a Covid health forum and there are many people like me who have been unwell for many weeks. Employers, having seen the NHS and Government predicted recovery times, are wondering why people who have not been hospitalised, and are therefore deemed to have “only” had a mild/moderate case, are not well enough to return to work within the suggested timeframe. This has not been addressed in the press conferences or any mainstream media and therefore there is a lot of ignorance surrounding the “real” recovery time.

I have resorted, after 9 weeks, to contacting a private respiratory consultant as my breathing and lungs are still causing me problems ( I am most certainly not alone still having severe symptoms after this length of time) and he has told me that he would expect me to be recovering for at least a further 6/8 weeks due to the extreme inflammation C-19 causes to the vital organs. If he is correct, my total recovery time will be around 4 months but please remember, as I was not hospitalised, this would only be classed as a mild/moderate case and, therefore, in theory, I should be back at work in 2/3 weeks.Many people I am in contact with have literally not left their beds for 6 weeks. You may have seen the articles written by Paul Garner, Professor at the Liverpool School of Tropical Medicine, who has been ill and testifies the long and unpredictable road to recovery.

Additionally, this same group of people feel that they have had little support whilst suffering quite terrifying and constantly changing symptoms alone at home both in the initial stages of the illness and during recovery. GPs have been prescribing precautionary antibiotics, 111 will tell you when to go to hospital if your oxygen levels drop but sadly avoiding going to hospital, with such a severe illness, does not mean that you do not require regular medical support and reassurance. GPs should be checking on their patients who are ill at home with C-19 (my surgery have not checked on me once) or a designated C-19 24hr medical/mental health support line should be set up. This being a “novel” coronavirus there has been huge mental anxiety amongst fellow sufferers as to their recovery and long term prognosis and many, like me, have resorted to supporting each other with online forums swapping any medical information they have managed to obtain from any source.

It is imperative that we let employers know what the “real” recovery time is to enable people to take the time required to return to full health.

Finally, I would like to thank you, the Government and, of course, our amazing NHS for the relentless work, care and dedication shown to control this truly horrific virus.

Lulu that's brilliant, you have explained it so well!

Thanks so much for all you have done

Well done and well said Lulu !! So grateful for everything you've done xx

It's been a gd day hope yours is too.

Top stuff Lulu.

So pleased Steph x

Fantastic !

Thank you for being our voice x

Great work Lulu.

Next step a meeting! lol..

Seriously though, what a long illness.

I've had a great week...then suddenly today woke up and the tight chest was back, along with the neurological symptoms I felt were starring to retreat...Just baffling!

Like I say, a really good week prior to this.

I'm almost at the point of wanting to find a private respiratory doctor also. Is your man based in London may I ask?

I already had to go private with neurology.

Like you the GP has not been in touch once.

After a week of feeling almost my old self again today has got me super down.

Given the chest pain had disappeared I have no idea why it would just pop up again over a week later. Really low tonight.

Hi Res

Sorry to hear that - the guy I am seeing is based in Enfield North London - it was tricky to find any private hospitals as quite a lot have been taken over by NHS. Also not many respiratory consultants to choose from. Let me know if you want his details.

I did ask my guy about the chest tightness and he said it was caused when the mucous builds up - I notice my chest is tighter first thing in morning and then improves after a good cough up in a steamy shower. He did also say the mucous will slowly decrease which mine has but as I said earlier - I worry that it is still there but building up so that is why I am still taking the anti mucous tablets to keep it "loose".

I have a pain in my right chest area today that not felt before - been trying to ignore it as think the body has a lot of healing to do and it hasn't been too bad.

Have you tried the steam inhalation he recommended to move the mucous? Might be worth a try.

Am sure it is just a blip and things will get back on track tomorrow.

Lx

I have never had any previous heart conditions.

Nor neurological!

This virus has done a number on me!

Will let you guys know how the tests go.

Really hoping they will all be ok and just a bit tachy from the virus.

Fingers crossed all will be well.

Yes let us know results .

Think it's done a number on all of us but we'll get there in the end .x

Hey Lulu,

I've been doing the steam inhalation today and been gargling with salt every night.

I find with the phlegm, it looks worst colour wise in the morning only when I wake and then rest of day is pretty clear or white.

My chest, funnily enough, when I've tightness gets worse as day goes on..Particularly if I walk a little too much or too fast. Maybe that's the inflammation.

Like you mornings are easier and I tend to get as much done then as I can because from 3 or 4pm on I lose energy quickly.

I've been on amitriptyline for the nerve pains and migraine auras . I didn't take the medicine yesterday though as felt so much better thought I'd see if it was ok to do without but by this afternoon my head was aching in a way no ibuprofen could cure so have reluctantly taken it this evening as I can't have another night with so little sleep. Last night heart was racing and didn't wake up rested atall so am hoping today is just a hiccup. Was disheartening to find however that off that med for one day, all those odd symptoms were still there😕 .

I may well take you up on that specialist.

I've personally found the private sector has been most helpful for me during this time.

The Covid Hub were helpful to a point but felt there was only so much they could do and if O2 levels are ok then they just send you home again.

I'm one of the lucky people who can afford this however. I really dread to think if I had not been able to go private. Would likely still be having nightly seizures & be worried sick.

Are your anti mucous pills prescription only?

Thanks,

Res x

Sounds like you need to stick with the meds for a bit longer - if they are making things better - I've just got another prescription for the Mucodyne (yep its prescription only) but got this from GP not private guy although private guy recommended to continue taking it. Sounds like might help you to move the phlegm if that is causing the tightness, you could ask your GP. Specialist seemed to think all the breathing/heart rate issues I talked about for me were down to inflammation and needed to heal. It's so stressful but all I can say is he didn't seem too worried about me - maybe he has been seeing much worse cases in hospital?

I too am very thankful I have private medical but willing to try and help anyone else who doesn't by asking any questions on their behalf. I will be speaking to him again Friday when I get the results of my CT scan/blood tests I'm having done Weds.

Hope you get a good night - try not to worry.

Lx

Fantastic Lulu, really top stuff. Thanks so much for doing that. All the best to you.

Sorry to hear that Res. Same thing happened to me between weeks 6 and 7. Couldn't believe it when I woke up one morning and it was back. Having said that, I've had more better days since then than bad. It will pass. I hope you feel better really soon.

Fab email Lulu.

It will be interesting to know his response and hope it will be something meaningful.

Take care

Mary x

That just about sums it up for me as well lulu very well put and a great job Gary

Morning guys and girls made it to Monday morning right for my virtual score I'm going to go for an 8 as you know I was improving wrong move to go back to work did have a couple of good days to the park etc now little sugar has put me on my back side again I'm trying to work my symptoms out I feel inflammation of my throat lungs and chest same phlegm as most but yesterday something tightened up left me with headaches and fatigue had a day in bed and still little fatigue so my goal is to get to a 9 by next Monday and so on Gary ps hope you all have a good Monday

Hi Lulu

Would you also please ask:

How do they know we don't have active virus in us at this stage?

How do they actually know that it is inflammation and not a weakened virus?

Sorry if you've already asked these and thank you so much for asking all of our questions.

X

Of course I will ask no problem at all.

So you're an 8 Gary?!! - that's pretty good but as you say room for improvement next week!

I'm going for 8 too - feeling much better this last week or so and today am going into week 9. Still struggling with Phlegm, coughing morning and night, tight chest and a few random chest pains but overall things improving.

Enjoy sunshine everyone and we mustn't overdo it (note to self!!)

Lx

Yes Im going to take it easy today lulu try and knock another one off headache today after yesterday's events might be brave enough to go to the shops get some supplies enjoy the sun gary