Still progressing, but a little setback.

[natswright]

Last two weeks I had some leave coming up so really pushed the boat out to get my recovery going. I did really well for a week, building up to two 20 minute walks a day.

However on day 7, I crashed.... My legs gave out and could hardly support me, and I had a few days of poor sleep and fatigue. I'm starting to recover, and am back to 1 walk a day, next week going back to 2 a day hopefully. However I'm sticking to 2 x 15 minute walks for 2 -4 weeks, so I can stay within my energy budget.

I do get so frustrated that as I approach 7 months into recovery, I still get so tired in the afternoon. I changed the bed on my lunch break from work, took 20 minutes and it really made me feel exhausted. I did recover ok, in about an hour though, but i'm definitely still a bit tired this week.

I do wish my energy levels were a bit better by now! I have arranged to speak to my GP about my legs, as they are the biggest issue for me.

I've had no choice but to get a mobility scooter for the short term, so I ca do shopping and stay out longer, go on walks with friends, that last longer than 15 minutes. Not giving up on exercise though, but I need a life too!

Anyone else on here, did your pneumonia symptoms persist beyond 6 months?

I'm still a little anxious about shopping for the first time, but it needs to be done, so I can accept it as normal. My anxiety is much better these days, but I do get nervous. Need to reduce it and get my sleep even better. I still have nights where nocturia gets me up 5-6 times. However i'm passing much less urine, so do not get dehydrated. But I suspect this contributes to me feeling tired.

My neck is also improving, but i've had cervical spondylitis for 7 weeks now! It is much improved.

[Damon1864 Volunteer]

Hi sorry to hear you haven't been to well, but hopefully you will start to feel better . You did the right thing getting a mobility scooter so can get out and about. You have a good evening and take care 😊 Bernadette and Jack 🐕 xxxxxx 🌻🌻

[Hidden in reply to Damon1864]

Mobility scooters and wheelchairs are there for those who need them.

Don't be frightened to use items that help you when you need them!

[TumbleDrum]

Hey Nat,

I just wanted to let you know that I am still having symptoms as well and will cross the 6 month mark in a couple of days. You are definitely not alone!

In an interesting turn of events, my lung doc put me on two weeks of methylprednisolone and I developed a cough towards the end of the course. I took a test this morning and it turns out that I am Covid positive again. Also, talkng with a post Covid clinic here, it looks like the virus can stay in tissues for some length of time. So it is possible that your body is still cleaning up the remnants of the virus too.

[natswright in reply to TumbleDrum]

Yeah, it takes some getting over! How are you feeling symptom wise now positive? I heard it can hang around for a bit too!

How is your walking going?

[natswright in reply to TumbleDrum]

Oh, do you get a weak feeling in your legs?

[TumbleDrum]

Walking is ok. For me the biggest issues have been lung pain and inflammation. It seems almost unrelated to activity levels, oddly enough. And for some reason, my follow up breathing test in April came back slightly worse than the one I took in January. So honestly I have no idea what to make of things.

[TumbleDrum]

Sometimes, my legs feel tired. Especially in the evenings. And I definitely get the afternoon fatigue you described as well. It’s a battle for sure and it’s so hard to measure progress!

[natswright]

I've had waves of tiredness today, but have managed a full day at work, and a walk. Going out on the scooter soon! My legs feel weak and wobbly, sometimes it is very mild, other times quite bad! Often worst in the morning, until i'm up and about.

I suspect I'm just still recovering from my crash. It's a hell of a battle, I wish I knew when the tiredness would pass. 8 months in? 9 months? Surely my body has to start to heal soon!

Just had all my full bloods done, all good, but I still get this tiredness.

[Katinka46]

I do admire you for the way you keep going at it. But it must be so dispiriting to feel that your recovery is at a snails pace.Well done

Xxx

[mylungshateme]

Sorry to jump in I completely understand your frustrations I had covid dec 2019 and we think again jan 2020 when most healthcare staff caught it as no PPE an unaware it was in the UK.

Anyway I still struggle I only went back to work Sept 2021 after 13 months off sick. I can't do the job I did before as I can't breathe with the mask for a prolonged time and physically can't do the work due to fatigue.

And omg the fatigue I still struggle although no where near to the extent of last year.

Legs don't really get wobbly anymore, my tachycardia is still very much here although not as severe except when have the covid relapse atm it's about 9 days a months were I get temp for me, brain fog, fatigued insomnia etc an burn out. Long covid clinic have said your body basically is still fighting and trying to repair itself. I will try find some stuff from clinic an put it on here just explaining what your body is doing etc.

Interestingly though my toddler an partner just recovering from covid an somehow I didn't catch it. Although I did have chest infection the wk before an exacerbation of asthma.

[natswright in reply to mylungshateme]

It affects people in so many different ways, some get mild illness, but crippling fatigue for months and years afterwards. I was seriously ill with it, but never got the brain fog, I just got fatigue, and breathlessness. I rarely get breathless these days and fortunately was able to return to work after 5 months off sick.

My main issue is muscle deconditioning, from a month in hospital. If I push to hard, my legs simply run out of energy, and I struggle to walk. I need to exercise more, but am unable to.

Sleep has been an issue, well, anxiety affecting that. For instance, I struggle to plan for the future. As I recover, I hope I worry less.

[mylungshateme in reply to natswright]

It's so difficult. The anxiety is horrendous I had breathing physio for my breathing pattern disorder covid left me with I was the highest score now I'm 0-1 . I still struggle with breathlessness but I'm a severe asthmatic also further complicated by covid. Fatigue, breathlessness are my worst symptoms now. But also lots of weird things which apparently isn't unusual in long covid. I wasn't hospitalized initially with covid but few months after I was mixture of long covid/asthma. And been in an out since. I may moan but when I think back to not being able to pick my baby up or walk let alone up the stairs an if I managed a shower I needed a 2 hour sleep. I've come along way. Covid is something else entirely. X

[Alberta56]

When fatigue strikes you just have to listen to your body and rest. Easier said than done of course unless you're really zonked out. Good luck .I know it's really frustrating but you are getting better all the time. xxx

[B0xermad]

I wish you well very soon,I think that you are doing well and a little set back is only that,keep being positive as you are achieving a lot.its a long road of recovery and different for every one who's had pneumonia ,let alone covid on top.my friends husband has taken 2yrs and is almost there with just memory loss and fatigue.

[Ergendl]

Big virtual ((((hugs)))), natswright. Some of us just have to take the time we have to take to recover. The goal is getting to one's own healthiest in the circumstances, not a competition to achieve the same result as everyone else. Just take it steadily, and remember the spoon theory of energy use.

[Hidden in reply to Ergendl]

Thats it Nat will recover when She is ready to do so and what's right for one isn't right for all.

I remember recovering after having blood clots in my lungs and got told recovery time was 6 months which I took with a grain of salt and as an average and felt that I would recover when I was good and ready to do so and I did!

[Hidden]

You will recover in time when you are good and ready!

Keep up with the exercises!

[natswright in reply to Hidden]

Thanks, going for a walk in the sunshine soon. Its frustrating though, I do so much walking, I just cannot understand why i'm still so weak in my legs. It makes no sense, all this exercise must have reversed the issues I have by now?

Could it be anxiety though? I usually do not feel anxious these days, but maybe it's subconscious. I'm not depressed, but do get angry and down at my predicament.

To compound things, my neck is taking an age to get better, although it seems to be mostly on the mend, its unpleasant to have that on top of other things!

[natswright]

Back from my walk, and just feeling exhausted today, legs so weak. I do not understand it, I was ok from about midweek, now i'm struggling. It may be anxiety though.

[Walkwalkwalk]

You are doing so much for your recovery. Do make sure that you also rest well to give your body the best chance to recuperate. My best wishes

Grace

[natswright]

Thanks folks, after a bad day on Saturday, just feeling tired, I had a good Sunday and was able to get out to a car show. I used my scooter and it let me enjoy the event, without worrying about my legs.

Physically I am feeling a bit better now, legs improving with rest.

[Verbena_67]

My dad also had lung scarring. He's only on oxygen for sleep, but his breathing is labored when he does activities. He too gets tired easily and hasn't been able to gain weight after the ordeal. Have you taken any supplements for this that you feel may have helped?