Struggling with CFS

I feel like I want to scream.

I'm doubting myself, doubting the diagnosis I've been given of CFS – even though every time I look at the symptoms or read about someone else's struggle with it I think yeah that's me.

I am tired pretty much all of the time – though tired isn't really an adequate word. Exhaustion is nearer, but still not adequate. I can sleep 8-10 hours in a night and not feel refreshed in the morning.

When I'm feeling really 'tired' I get night sweats, I feel achy and my limbs feel heavy, I get sensitive to the light and to sounds around me. My brain slows down and I struggle to understand what people are saying to me, it's hard to concentrate. I struggle to think what to say if I'm around people and I can lose words part way through a sentence or forget what I'm saying altogether. I can also get very ratty as it can feel like my senses are being assaulted from all sides. I don't know what to do with myself at these times. What do you do when everything around you feels like it's needling your brain? Well I try and find a quiet corner and sit and concentrate on my breathing. And if I can't do that then I struggle through the thick, sludgy fog that seems to have taken over my brain until I can. When I do find a quiet corner I can be there for some time (sometimes hours) until I feel that I can again cope with a little input (maybe listen to a podcast or watch TV).

It's not always like that though, I do have better days. Not complete overwhelming exhaustion – just bog standard everyday tiredness (at least for me).

A 'normal' day for me at the moment consists of trying to conserve some energy so I don't 'crash' and end up like the above for hours or days. So I'll spend a lot of time resting during the day. And by resting I mean meditating as everything else takes energy. Though sometimes I'll get away with watching something light on TV or listening to a light-hearted podcast as 'rest'. 

A year and a bit on from the diagnosis being confirmed by a CFS specialist I'm still feeling a bit like I won the booby prize. I do at least have some people taking me seriously and that's progress from being told by doctor's so many times that 'everyone is tired'. But it would be so much easier if it was something else. Something that didn't feel like an easy out for the doctors – cheaper than more tests. Something that had a definitive test. Something that the medical profession knows anything about would be good. Something that gets more than £1 of funding per person diagnosed with it. If it was a condition the doctors or CFS 'experts' could actually give me good advice for. If someone could tell me how to get better, or at least advise me on how not to get worse.

I'd also love for people to be able to understand what I go through. Though I'm not surprised that people don't.

Firstly; Chronic Fatigue Syndrome is such a misleading and inadequate name.

Secondly; Chronic Fatigue Syndrome or ME covers so many symptoms and there's such a wide range of people that have it. According to the ME Association there are degrees of 'disability' you get with CFS/ME and this ranges from being able to work but struggling to keep up with hobbies and socialising, to being bed ridden.

Thirdly; I've become an expert at hiding any issues I've had over my life whether it's to do with energy or anxiety – my default is to pretend to be 'normal'. I want to fit in and I don't want to bore people with my issues constantly.

Fourth (and finally); even I don't understand a lot of the time. It's a varying condition and sometimes I'm able to do a lot more than I think I can. It can surprise me at times how well I do cope with some things. I am also surprised by times when I think I'll cope ok and it leads to a crash and feeling absolutely awful. It's confusing to try and figure out what I have the energy for and what I don't.

The only advice that they can give me is to pace myself. Pacing involves trying to make sure that you rest before you've used all your energy up. It's trying to figure out what you can do – and then reducing it a little so you don't wear yourself out. It's counter-intuitive to everything I've been taught growing up and it's frustrating as hell to me right now. I want to just throw myself into all the things that I'm excited to do. I have so many interests and projects I want to do that I just want to dive into them head first. But I've found out that if I do that then I end up paying for it. And at the moment I feel I may be being too cautious at times. But at least I'm not crashing. It's a hard balance to get. And no one can advise me on exactly how to do it as it's different for everyone.

Basically the advice from medical professionals right now is 'we don't know how this is going to go for you, how long it will last or what will make you better, you have to figure this out yourself by trial and error'

Pacing also involves trying to balance using different energy types and is split into mental, physical and social. If I do too much that uses mental energy (i.e. watching TV, reading, listening to podcasts, using the computer, thinking or planning) then I do get exhausted. Planning in some physical activity and rest does seem to help a little. Though I often start to get tired after just 15 minutes of a physical activity like washing up, chopping veg etc. Social activity is also important but this is hard at the moment. I am at home with my parents for most of the week and it's a bit isolating. I am also finding it hard to see many people as by the time I've travelled to see them I have already used some of my energy and often have limited reserves left to socialise.

I have had some limited times recently where I've felt energised and stayed out longer and really been able to enjoy being around people. It's been glorious, but I have the constant worry that I will pay for it later. This doesn't always happen. Sometimes I'm lucky and I don't get the payback. It's always in the back of my head though. And when I do manage to have a good time and not end up paying for it I feel guilty and the self-doubt starts to creep in again. 'Is this real?' 'Why am I not feeling worse than this?' 'Why was I allowed to do it this time?' 'Am I better now?' 'Am I getting better?' 'Was I ever ill?' 'Is it just delayed payback?'

And I think back to all the times I did crash. And wonder if there are new parameters now and if so what the hell they are...

It could be that nothing has changed and I just had a bit more energy that particular day or week and if I tried it again I would crash. I'm living in hope that I can try and do a little more, but if I get it wrong and push just a little too far I could end up worse again or even back at step one. Here's hoping I'm actually one step closer to recovery, and that the next step I take doesn't end up with me slip sliding two steps back.


If you'd like to learn more about ME/ CFS the following organisations could help:
ME Association - https://www.meassociation.org.uk
Action for ME - https://www.actionforme.org.uk/