Post Viral Fatigue – the honest truth

When I caught a virus back in June I never thought I would be suffering from the affects months later. It started back when I suffered from a very bad virus. I was in bed the entire week, sweating so crazy that my clothes were damp, I had to have some meals in bed as I literally couldn’t get up. At some point my temperature dropped so low that 111 was called as I started not finishing my sentences, and constantly taking my clothes on and off as one minute I would be boiling and the next absolutely freezing and just generally acting a bit odd. I had two COVID tests which both came back negative. Luckily my temperature stabilised and whatever that nasty blip was, it seemed to have nuked something within my body and I felt a bit better.

A couple of weeks later I was still struggling with the tiredness, a persistent low grade sore throat, my throat also had a odd taste half the time, headaches, nausea where, at times, I was running off to be sick (but I never was sick) and walking really slowly as well as I was just so tired and if I managed to venture out I would have to stop every so often to catch my breath on walking routes which were flat and had walked a million times before. At times I felt as if I was floating above myself (yes I do realise it makes me sound a bit crazy!) I just had no energy, I was feeling rough, I had stopped working at my desk as I was just not comfortable and retreated to working from my sofa which I hate as I prefer a desk as it sets my mind. My mum suggested that I could have post-viral fatigue.

I had a blood test to rule out glandular fever (which my Doctor initially suspected) and anemia (I knew I didn’t have that as I take my supplements fairly regularly). All my blood tests came back fine. When I had a blood test where I ended up passing out and managed to get myself over to the examination table with my legs up in the air to get the blood flowing back ( I have had A LOT of blood tests this year, I mean I had a cannula for morphine and I had to inject myself with blood thinners for christ sake!) and never fainted once so I thought that was quite a telling sign. I felt rough as anything after and I had sweated through my jumper.

I had rang the Doctors several times and was told to wait it out (fair enough) but it got to the point I feel as if it wasn’t going away and I was feeling truly awful so I rang again. Essentially the Doctor thought I had, had a glandular fever type of virus and due to this it had triggered post-viral fatigue. It was agreed that it would be best if I took some time off. Originally the Doctor suggested working Monday, Wednesday and Friday mornings but I wanted to work more (I have already had a lot of time off this year!) so it was suggested I had just the Tuesday and Thursday off for the next two weeks and go from there.

The Doctor also talked about pacing. Pacing is where you do everything at a steady pace. So rather than doing loads of things when you are well and then not doing anything when you feel horrid (like I was doing) you go along at a more steady pace. So I started to follow this advice religiously as I didn’t want to feel like crap forever (post viral fatigue can long term turn in ME/CFS).

That Friday I felt absolutely dire but felt so much better on the Saturday, again it felt my body had nuked something. Since then I have gone from strength to strength. I certainly think the turning point was that Friday and the Tuesday and Thursday I had off. My body just needed that chance to rest. After the two weeks I had working part-time I decided to go back to work full time. I did feel that it could be a bit soon but I enjoy work and like being busy, I followed the advice about pacing so even though I felt good at certain parts I knew I had to take it at a steady pace. It did work but again at times I had to work on the sofa.

I have had to change my entire life, I think if I hadn’t had the op where I couldn’t do anything anyway afterwards it would have been harder and more of a shock to the system. I have missed an entire season of cycling and running (I have not ran since January). I have had to spend more time on the sofa and in bed than I have wanted to. I have to constantly weigh up in my mind that if I do X then it means that I cannot do Y, I have to factor in rest as well which means if I go out in the morning then I cannot do anything in the afternoon and vice versa.

Mentally it has been quite wearing on me, at times I have thought that I will never get better, I certainly believe that this is worse than the major surgery that I went through back in March, I have felt alone and frustrated at myself at times and it has reduced me to tears on a couple of occasions because I have felt that I haven’t been able to get on with my life. I joined a post-viral fatigue support group on Facebook which has been wonderful as I have been able to speak to people with the same condition and not feel like I am boring anyone. I had tweeted about post viral fatigue and done a lot of googling but couldn’t find many people talking about their experiences.

There are two take aways I have learnt throughout this post-viral fatigue. The first is that in this situation the best thing you can do is rest. If you keep trying to push through it is not going to work and you will only make yourself worse. This especially means not overdoing it on the physical activity – I have done a lot less than normal. Partly because I literally couldn’t do physical activity but also I needed to rest.

The second is not feel guilty about not doing anything. I like to be busy and frequently berate myself for not getting things done and not being productive as I would like. It doesn’t help anyone – not least yourself and it just makes you more tired.

Have you suffered with post-viral fatigue?

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