The stalking by my chronic fatigue has been quite relentless lately. It's probably been the most ruthless of all my symptoms these last few weeks. Virtually all of my energy has been geared towards getting ahead of it just enough to be able to get through the work day.
I've been finishing work and crashing almost immediately. Usually it will be an uneasy nap on the sofa where I'll often feel worse after because of dull headaches. Leaving me feeling foggy.
It's been a real struggle to feel in any way productive when it feels like anything I try to do is being dogged by the constant dark spectre of fatigue.
It's frustrating to not be able to read more than a few pages of a book before my concentration gives out or my eyes get too tired or I feel the weighted pull of a nap.
Even the most simple tasks like getting a shower, which I know will ultimately make me feel better in myself, take so much "psyching up" for before I can even get into the bathroom.
A lot of people are familiar with the "spoon theory" of chronic illness and it is a very useful way to describe what it often feels like. It's not fun to have to parcel out even basic activities to decide what I can or can't do either in the short or long term. It can be exhausting in itself to juggle scenarios where I have to think, well, I can do this thing but it means I can't also do this other thing.
That can be on a macro or micro level. I'll have to consider if I want to go to the pub or the cinema or some other social occasion, I'll need to factor in recovery time. It can also be, okay, I want to have a shower so I'll have to have something quick and easy for dinner that requires little to no prep. Always having to be on alert for a crash or flare-up terrritory which are seemingly always creeping up behind me.
It's difficult to have to say no to things and to feel like a burden but I've "pushed through" enough times now to understand what the consequences could be. Sometimes I still get it wrong and stubbornly push back against those limitations because I just want to do what I want to do and either damn the consequences or accept them.
These considerations are even more difficult when the chronic fatigue really has a firm grip on me. It's insidious and makes me feel low in mood because I don't have the energy to maintain the positive attitude I've previously relied so much on, so I become even more withdrawn and lacklustre. How do you break out of that?
Sleep? Would that it were so simple. If my sleeping is fractious, I'm not getting the restful sleep I need. If I'm waking up every hour or two, having vivid dreams but never reaching that regenerative deep sleep, I'm basically scraping to get by. I wake up feeling exhausted, get through the day as best I can, often have an uneasy nap and the cycle repeats sometimes seemingly without end.
It impacts on so much. The way I see myself, the way I feel I look to others, the joy I take in things can feel muted because it's like my brain and body are smothered in heavy, soggy cotton wool.
I've been typing this post over the course of two hours. I've been up since around 6am. I've probably had three or four hours bizarre dreams filled sleep. Constantly feeling like I'm being pulled to the surface whilst simultaneously being dragged back down.
It does feel sometimes like I'm outside of my body just watching this happen, with the attendant helplessness of not being able to do anything about it.
There's anger and Sod's Law about feeling so bone tired and not being able to sleep. It's unfair and makes me want to cry in frustration, but that requires energy too. So often it'll just be sitting or lying down staring dolefully into space or resting bitch-face. Having no energy or motivation feels like a half-life sometimes.
And yet...
I have a good job that allows me to work from home, I've been able to pick my hours which enables me to start early and finish early in the afternoon so I have time for baleful naps and staring, if that's what I'm able to do in that moment.
I have two affectionate cats that are always up for joining me for a nap.
I have people close to me who care and check in.
I have projects to try and focus on and derive pleasure from.
I have books. Even if I can't read as much in that moment, there's pleasure and comfort from just looking at my bookcase.
Most importantly, I have my husband who has been affectionate and caring. Who makes me cups of tea or puts a pizza in the oven for me because I don't have the energy to make anything myself. He's somehow able to still make me feel attractive when I'm still sat in my pyjamas but is also encouraging and complimentary when I have made an effort.
It does feel like some of my symptoms are following me and stalking my steps. Flare-ups can be just around the corner and I don't even know it, ready to jump out at any moment and surprise me, like an unwanted cold call or knock at the door. I'm tired from the chase but clearly need to be kept on my toes.
I find my way through. I made it to the weekend. I haven't slept great, but I have slept some. I've had tea and a croissant. A cuddle from the cats. Watched a true crime programme. I think I can even make it upstairs to get properly washed and dressed. Small achievements can feel like big accomplishments, and I'll take that.
Not today, creeping dread.
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