So, interesting one this. I liken the fatigue to a car driving along a road, with some fuel in the tank. But there is no fuel gauge, no way of knowing when it's empty.
Today I had more energy than yesterday, yet my eyes felt a little heavy all day, my tummy muscles felt weak (maybe anxiety)
I just wonder if i've done too much today, and will crash again tomorrow!
I've been pacing myself, when I feel tired, I have a 30 minute rest.
How have others come to terms with this?
Nat, fortunately I haven't experienced Covid, but I have a friend who did and has also been left with Long Covid. She didn't end up in hospital, but has had a number of relapse type events, and now her main LC symptom is fatigue.
She is seen in a Long Covid clinic, where she has been referred to various other specialisms, like psychologist, physiotherapy, dietician and so on.
She has now been started on a medication regime, involving some hefty antihistamines and and another drug, alongside lots of nutritional supplements.
Apparently there are some excellent Facebook groups for LC, although I imagine it could be patchy, like the rest of Facebook.
I do hope you start to feel better very soon.
Thanks, had a better day today, just hope I've not over done it! Eaten well and had my vitamin C
At first I thought you meant pandemic fatigued, Nat. But if you’re talking post Covid as a victim of it, I don’t have much to offer. I do know that I had two consecutive years of the flu (in spite of vaccines) and with emphysema it felt like I was truly moribund. I could barely walk 10ft without being out of breath. I hope you’re not one of those patients they call long haulers with a continuation of symptoms post Covid infection. As always, your GP and or your pulmonologist will have the better advice.
Now, this will sound crazy, but bear with me.There is a condition called pvfs- post viral fatigue syndrome. Basically you are wiped of your feet for many weeks following a viral infection. (I have experienced this several times)
If it persists for more than 3 months, then it becomes cfs/me - chronic fatigue syndrome/myalgic encephalitis. ( Which I have.)
It seems to me from what I have heard about long covid theses conditions are very similar.
As part of my treatment I did pacing. At the beginning I couldn’t dust the whole of the windowsill! But, yes, over time it works.
Pacing, when managing fatigue is a bit different to what we usually mean when we say we are pacing ourselves. In general terms pacing yourself means taking things steady, in fatigue management it means finding your baseline and not exceeding it. It means understanding the amount of energy it takes to perform a simple process.
I hope you don’t mind, but I’m including a link below to a booklet by the ME Association, which you might find useful. You don’t need to read oak of it, but there is a section on pacing that you might find useful.
actionforme.org.uk/uploads/...
Me too Troilus! I was dx with CFS around 2016 but it was a while before I accepted it believing the GP had made a mistake. I've learnt to pace too and at last I think my kids 'get it' so don't ask too much in the granny stakes. I'll private msg you one of these daysto exchange notes.Thank you for the link ××
Natsright, it's so important to nourish yourself well, sleep when you need to, exercise very gently then rest. There's lots of recuperation to be done after activities in order to replenish the energy supplies. My big mistake was to always overdo it & end up horizontal between the bed or sofa for weeks. I read somewhere to liken your store of energy to starting the day with an envelope full of energy, use a little and it will replenish daily, use a whole lot and it'll take days or weeks to replenish. That analogy suits me anyway. Take care. Peege
That so describes my life living with bronch and then added heart failure.
I do so feel for you LP, also Cofdrop, Hanne62 plus all other with severe bronchiectasis. Also of course Caspiana who's reply is below. It certainly takes an optimist to keep going - and in your case ferocity with the medics. I'm thinking that the collective compassion on this forum hold us up when physical and emotional resistance is low. 100s of gentle hugs.
It really does. I so feel for natswright and am happy that she came to the right place to express how she feels. Who else but our dear lungie friends would empathise totally with her and really know what it is to be that exhausted most of the time. Also, I do believe that it is especially hard for people who have always been well to find that on top of having had a really nasty illness, they are just not regaining their strength as they would have expected to. Most of us on this site are used to feeling ‘several degrees under’ and have had to pace ourselves for most of our lives. She has had some very good advice and understanding and I do hope that she is referred to a long covid centre for specialised help.Of course, this reply is for natswright too.
Several Degrees Under™️ Great band name, Littlepom. 😀
I like that analogy, peege.
Hello Nat,
I've had a lung transplant and been doing well. Then I had a very bad case of Cytomegalovirus last year and then recently Epstein Barr virus. My immune system is so very weakened, despite my best efforts I still have flare ups. I am four weeks into EV and I'm still running on empty. It is very, very hard not to feel like myself and not to have energy. My reflexes are slow and the fatigue is awful. All I can do is rest as much as I can as there is no treatment I so understand your feelings, I get worried that this is my new normal. But like most chronically ill people I just adjust and carry on always hoping to get back to where I was. *HUG* I guess we just have to trust our journey.
Cas xx 🙋🐕
Hello natswrightI have a great deal of sympathy with you as you recover from covid. I’m very interested to read your post as I have recently had covid and am feeling extremely weak. You don’t say how long it is since you had covid, but I was diagnosed with pneumonia on 6th September and when I was still recovering I had a positive PCR test on 3rd Nov and as yet I can’t stand up or walk at all, the pain and weakness in my muscles and knees is unreal and my breathing is poor. Last week my doctor said it will probably be about 12 weeks before I start to feel a bit better. The physio has arranged for me to have knee braces to help me stand up and I have ankle exercises to do whilst sat in my chair to strengthen my muscles.
The nurses have told me to listen to my body and don’t over do things as I was making myself worse
I hope you pace yourself and make sure you don’t empty that petrol tank.
Take good care of yourself. Hugs 🤗🤗
Wow, that sounds bad, I got I'll back in the middle of September 21, went into hospital, got out just 3 days ago. I can walk ok, but just short distances. I do feel better each day, just a little. I take vitamin C and eat health diet. I was extremely fit before this, exercising 3 times a week.
It sounds like yr doing well Natsright,to b feeling a bit better ea day.hope that continues for u
Hi natswright
Have a look at our and our sister charity Asthma UK 's Post Covid Hub page . There is lots of information on there about symptoms and recovery and also some stories from people sharing their experiences of covid. I have added a link below for you.
blf.org.uk/support-for-you/...
Take care
Debs
I don’t have experience of post Covid fatigue but I do have a lot of it experience of fatigue caused by my autoimmune disease. A lot of people pace themselves by using the spoon theory. butyoudontlooksick.com/arti... hope you feel better soon.
Hi Nat . It's rather too easy to overdo things, as least I do. I feel fine, back to normal ( ha, ha) so I do too much. Take warning by me. 😊😊😊
Oh, in bed the fatigue is back.... Just hits out the blue, sats good, but you feel worn out! Hope it passed soon.
Welcome! There is some excellent advice on here. All I have to add is to suggest you google 'the spoon theory'. It's an explanation of the importance of rationing our limited energy resources. It's hard to accept fatigue but life is better if we have strategies to cope rather than fighting it.
Will have a read, oddly eating chocolate and having a sugary drink helped a lot!!
I'm sure there's a medical reason for that but I say if that helps then , hey, go for it!😂🍰
Unfortunately as excellent as modern medicine is, it is ill equipped to deal post infection chronic conditions. One upside to the pandemic is that it has brought a great deal of long overdue attention to the matter. The body is a complex work of nature’s greatest art and covid fundamental disrupts our body’s function on many levels. For decades people have suffered with CFS, ME and the taboo spectrum of tick borne chronic infections. Despite overwhelming evidence to the contrary many doctors to this day dismiss these conditions as psychological and label the patient as hypochondriac attention seekers. I am offering no medical advice but I can say I highly recommend that you read the book Chronic, prepare to be your own advocate and be prepared to take on some non conventional means of treatment. I say this speaking from experience because I’ve spent the last four years myself bit by bit battling to get my own health back. In a matter of a few months I went from being able to work 50 hour weeks in the building trades followed by weekends spent exploring the highest peaks in North America to barely being able to walk across the room without losing my breath and passing out.
I have no personal experience but have seen or heard numerous stories on radio and TV of people having issues long after they are over COVID and I think it will be a while before we know the full impact of COVID.
My daughter has covid at the moment. It seems to have whacked her out so fingers crossed she makes a full recovery. I think her husband hadn’t got his senses of taste and smell back completely. Take it easy. It sounds like how I was after pneumonia. Little steps and rest. Xx
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