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Mary’s Story

Published 12/06/2020

I too am struggling with extreme, severe fatigue after nearly 8 weeks and I am a Nurse who looked after a lot of very poorly covid patients.

I tested positive for covid at the start, and I have been extremely poorly. My main symptom now is extreme, severe body fatigue to the point that I am dictating messages and this submission by voice clips because my arms are so exhausted and aching and throbbing – this has been very common throughout and can last weeks. Everything is a struggle – eating, lifting cutlery, washing etc. My entire body is exhausted to the point that I have never functioned at all normally since the start, not even a basic normal.

3 weeks of ‘covid’, including 10 days chest tightness (for 24 hours I couldn’t even lie down or sleep), endless fevers, bilateral viral ear infections, horrific crippling fatigue, a mild cough at the start, awful head etc, and then I was told by my doctor that I was then experiencing ‘post viral fatigue’ as they believe covid finishes after 2 or 3 weeks. So these last 5 weeks my main experience has been horrific fatigue to the point where my legs can be that shaky and exhausted that I’ve collapsed and fall over into things quite a few times, and I continuously struggle to walk around my flat.

Three times I have felt like I am making progress and small steps by washing up and walks of 100 metres and I’m starting to feel like I can operate a bit – I even drove down the road and bought a loaf of bread – and then I have come crashing back down with a huge thump where my entire body is crippled for weeks or a week.

I am writing this a bit less than a week after thinking I turned a corner and that fatigue was lessening and then plummeting, and I am still unable to do anything. I could text and use my arms for one day and now I’m struggling again. I feel so disheartened.

I still have fevers on a daily basis, which increased when I felt like I plummeted down again and seem to increase after any task and through the day. I have had many headaches and awful heads, exhaustion where I feel comatosed, I have brain fog where I struggle to sometimes follow what people are saying, I cannot read a book and haven’t since the start, and simple tasks often feel too complicated for my brain. It is scary and upsetting and you feel helpless. I’ve also felt like I am getting a cold but then I’m ok the next day. My chest tightness/awful pressure only lasted 10 days when I was ill but my oxygen saturations were often low on exertion/moving, and it affected my heart- I am waiting for a check-up. I had two short hospital admissions, but shortness of breath has never been a symptom of mine.

I have been told by specialist doctors that they are seeing a lot of people like me each day now who feel incredibly lonely and wondering what is wrong with them. Some doctors ARE beginning to realise.

It is a very lonely experience, and there needs to be more publicity. There are a huge number of articles on it now if you google “fatigue after Covid” but only the people that are struggling seem to be reading them. I also know others with this same fatigue, to a lesser extent or it has improved a lot more.

I have had quite a few people thinking that there is something wrong with me, and that it is not normal, and this is extremely frustrating, lonely, and angering. Before this, I was an extremely fit, active 31 year old who never had any health problems. It is definitely helpful to hear other people’s struggles and it is also very profound to see how many health professionals are struggling.

We seem to be a hidden underworld. I am lucky to have a great GP but I am sure many others are not as lucky. I know how to manage ‘post-viral fatigue’- by resting and pacing any activity, and by reading and listening to experts, so I am doing all the right things and not ‘over-exerting’, I am following my body, but still I keep plummeting down to the point where I am crippled.

This is now of course affecting my mental health and I feel low in mood at times, and struggling with living alone but also hate requiring other people’s help. I am often too tired to communicate anyway. I hate being dependent, (I can’t even wash any dishes so have asked for utensils etc on numerous occasions – then given them back and then had to ask for them again again and again). I also feel angry, anxious and pissed off. Angry that people think covid is just mild for 2 weeks or death or ITU for “older people”. It is so, so wrong. I am angry when people give advice like maybe you aren’t eating properly or you need to strengthen your legs. I couldn’t be trying any harder, I am desperate to get back to life and work, but my body is not letting me even eat lunch without feeling awful a lot of the time.

These last 2 months have been horrific and I wonder when an earth this will end. Or if it will become chronic which is terrifying and extremely depressing to imagine. I want to get back to work and life and enjoyment. But I can’t even look after myself, or function in even a normal way around my tiny flat.

I feel I should add something positive here to let people know that there’s hope but I am not feeling that hope at the minute!! You are not alone though.

It is so helpful to read other’s experiences of fatigue though. We need a voice and we need a voice in the media and by Doctors.