15 month update, Covid Pneumonia, the road to recovery

[natswright]

The last few months have been odd, yesterday, I got an automated call from the NHS, to give me an appointment at the long covid / pulmonary clinic. I turned it down, for two reasons.

Firstly it was 12 months late.

To explain the second point, lets look back at whats happened since October 2022.

I was doing well at the start of the month, carried this progression into November, I was managing shopping trips and 3 bouts of exercise a week, waking several miles.

Then I was hit by a gastro intensinal infection, that really knocked the wind out of my sails, in the latter 2 weeks of November. Exercise was reduced and the last week was pretty much complete rest. However, late on in november I recovered, after starting a much higher dose of vitiman D, and some B12, I really bounced back.

In the last 3 weeks, i've shopped, walked or cycled every day. There has been no PEM, or fatigue at all. I'm starting to find exercise really engerises me. It seems the long covid is pretty much gone.

I do have some residual issues, which my GP thinks are trapped nerves. I still get strange aches in my legs, mainly my right, but only on and off. Walking helps and I now know its just that, I do not worry. My neck is still stiff, 9 months of issues, but very slowly getting better. My GP also agreed that I'm just feeling the effects of being seriously ill, and on long term bed rest. Muscle aches. I can easily walk 2 miles now, but my legs feel like I've walked 10 miles sometimes.

I'm still building back my fitness, and suspect that will take another 6 months.

So, from that perspective, the long covid clinic could offer me nothing. It just shows the state the NHS is in, it took them 12 months to offer help that in the end was not needed. I got better on my own, with a lot of help from many individuals along the way. However I had to make the connections to those that helped me.

Apart from my muscles aches, I can lead an fairly normal life. I'm not running yet, and my endurance is not what it used to be, but i'm able to work on that.

To all those that have been in my situation, there is hope, if you work at it. Its been a hell of a ride, and I've felt so low at some points to the point where I was just sobbing on the phone to friends, wondering when my pain would end.

I'm not 100% better, but I'm free of long covid. I do have some symptoms of post ICU syndrome, with muscle aches and nerve issues, but these improve with exercise.

With me pushing hard this last 3 weeks i've finally convinced my subconscious that I can stand, walk and do lots of activities without getting tired or being in danger.

I hope my story helps others get better, and I will still post from time to time as my full recovery is not yet complete. But i'm well on the way to a full recovery.

Last christmas I walked 300m to a park bench. This christmas, I cycled 15 miles, and walked 10 miles over a week, did shopping and housework, plus held down a full time job.

If I can maintain this activity for another 2 weeks, then I start running in January

Couch to 5k here we come!

Part Deux

[Blackbird9]

Absolutely amazing you are doing great ❤

[sassy59]

You’ve done extremely well so far and will continue to do so. You have such determination to get well, I just know you’ll get there. Good luck to you and have a great Christmas. All the best for the New Year. Xxx👍

[peege]

so good to hear from you natswright with the update on your progress. You've been very wise not to run before you can walk so to speak.

Re the aches & pains, I probably mentioned my 6 year old granddaughter who had long covid from getting covid in April 2020. Her long covid manifested in very high temperatures spikes (for many many months) & extremely swollen joints and oedema in legs & feet. Her little feet were like balloons & she's a normal shaped little girl. The whole thing was a nightmare with 7 trips to A&E. She was eventually referred to a pediatric rheumatologist in Southampton Hospital (they live in Buckinghamshire).

Only mentioning it due to your aches n pains in case its connected.

as always, well done you for keeping on keeping on 👏 👏 👏 👏

[natswright in reply to peege]

While many with long covid do have strange aches and pains, mine, I feel, are related to being incapacitated for 3 months, followed by 3 months of very little activity. Only since June have I been exercising more, and only in the last 2 months really started to feel more myself.

[Alberta56]

It's good to know that you are doing so well. Quite encouraging to others who are recovering from long term illness. Please keep posting.

[O2Trees]

Congratulations!! You've done brilliantly.

[eleanordigby in reply to O2Trees]

Hi O2Trees can I ask how are you feeling now, is your infection under control?

[O2Trees in reply to eleanordigby]

Ah thank you for asking ED - as this has been so different to previous exacerbations Ive had lots to think about. It came on quite differently, with throat/laryngo spasms and asthma - which got worse and needed first pred and then ABs as you know. But very little seemed to be coming up from the lungs though I felt weak in the way you do when you have a lung infection. And seemingly no infected mucus.

Well it is much better and Ive been sleuthing online and am sure now that the main problem this time has been a flare-up of silent reflux, though of course with asthma and copd complications. Ive always wondered why I dont have problems with breathing at night despite not being well. So I found PubMed papers which state that with acid reflux you tend to have nighttime breathing and coughing problems but with silent reflux it happens when you are upright during the day, and with asthma and choking which I was having too.

This was the first morning I woke up breathing through my nose, not mouth. Coughing better, ie looser and less of the stuff. But Im pleased Ive got a sample being analysed as Ive never had a bronch sputum test, which is cultured for longer, done before. So that's helpful.

How are you now you're out of hospital? A long stay is, even though necessary, hugely debilitating. Please take good care rehabbing yourself. I hope you are well and strong for christmas. Again thanks for enquiring after me

[MMaud]

Good to hear from you Natswright. I'm pleased things are moving very positively for you these days.

You have come a verrrrrrrryyyyyyy long way from seriously considering a stair lift. Well done.

[eleanordigby]

Wonderful news, I’m so pleased for you 😊

[Clovergrass]

What a great post. Well done in coming so far due to your determination and patience too. You went at your own body's pace 👍

[JJ_7]

Hi Natswright. Like you, my lungs have been seriously damaged having had yearly admissions over 4 years for pneumonia. I am still recovering and attending Pulmonary rehabilitation weekly. I am slowly getting better but not at your level. I am so pleased to hear of your progress and there is hope for us all. Best wishes for Christmas and New Year xxx

[Jaybird19]

Well done .Pulmonary rehab is !good . Iwas doing0u this got to do 17 mi nutes on the treadmill ,, went home happy. Met friends and they said i looked well but was in hospital day after for emergency op. Now going home tomorrow where i live in house with 2 flights stairs to bedroom ., not happy

[Jane2005]

Amazing! Well done 🙂

[watergazer]

amazing progress natswright. You are a shining light to others with long covid I have a magnesium spray for my aches/restlessness in my legs. Does seem to help. Take care xx

[Otto11]

What great news. I’m genuinely pleased for you & understand how difficult the journey can be. I had Covid 16 months ago & not had a single appointment with a GP at our practise even though myself & hubby have both begged. My Rheumatologist eventually did full body CT’s to rule out anything nasty in July & asked my GP to refer me. I noticed on my app 2 weeks ago the referral has now been done 🤷🏻‍♀️ so goodness knows how long I will now have to wait. It was March when my Rheumatologist started this ball rolling. Sorry about ranting it’s getting me down I do hope you continue to improve even more but well done you xx

[Verbena_67]

It'sgreat that you have such a positive outlook.

If I can ask, what kind of nerve issues are you experiencing?

Are you still experiencing shortness of breath? Did your oxygen stay up with movement?

Thank you in advance!

[natswright in reply to Verbena_67]

I get neck pain and stiffness in my legs occasionally. Thats pretty much it. I'm walking long distances now, and can climb small inclines easily.

Next month I start couch to 5k again, running!

Since I did this post i've improved vastly, and walk every day now. I covered 8 miles in two days recently and was just a bit tired the following day. After serious illness the body has to be built up again, and this takes a long time.

I have no breathing issues. I get out of breath running and walking up steep hills, but thats normal for someone who is not acclimatised to running. This is why I have to learn again to run 5k, because my body lost all its conditioning.

This is why I walked for 3 months prior to this, to ensure my body had the endurance to do this.

I plan to walk another month, then start my running back up

[Verbena_67 in reply to natswright]

Thank you for your reply.

[Verbena_67]

I'm sorry, Nat, one more question... did you say you have developed fibrosis? If so, what are you taking to keep the inflammation down?

[natswright in reply to Verbena_67]

If you mean my lung scaring (pulmonary fibrosis), it was described as minor, and after 15 months seems to have healed. I used to get chest pain when exercising, however that stopped in the last 2 months Leg wise, again, my GP suspected nerve damage, causing the issues.

I still have issues with my legs, they ache a lot more after walks, however I think this is lack of use, deconditioning takes an age to get over. My muscles are quite stiff still, which is why I walk every day, to keep them in shape. My neck too gets stiff still, but is slowly improving. When you do not move, you get stiff!

Its working well too, with huge improvements. I still have another 6-12 months to go I reckon, before full recovery. Some days, my legs feel absolutely fine now, not something I've felt in a while.

However, I'd recommend anyone have a diet that keeps inflammation low. I take turmeric 3 times a week, with curcumin & pepper, small tablets.

I eat healthy foods and minimise processed stuff. Lots of fresh white meat, oily fish, like salmon, tuna, fruit and veg, potato's for home made chips and jackets. Plenty cheese too.

I take a vit D supplement too..

Crucially, keep as active as you can.

[Verbena_67 in reply to natswright]

Thank you, again! Good to hear you're heading in the right direction.

[LisaIIP]

I love this post! Thank you so much for sharing, it gives me hope xx

[natswright in reply to LisaIIP]

Definitely keep the hope. I climbed Blencathra in the UK Lake District a few months ago!

mountain vista