If you suffer with chronic fatigue, you know about it. It doesn’t just hang around in the shadows, occasionally stopping by to cause problems, it clings to you every single day, trying to weigh you down until you give in. It’s largely associated with chronic illnesses and is often part of conditions that cause widespread pain, but it’s a symptom of a lot of diseases and conditions and it’s something that is hard to get across to others.
Chronic fatigue isn’t like feeling tired. It’s not like having a really long day and feeling like you need to go to bed, it’s a crippling feeling of complete exhaustion, for absolutely no obvious reason. It’s kinda like how I imagine a dementor’s kiss would feel. There you are, just trying to get on with your day, and along comes the fatigue in it’s miserable black robe, ready to suck the life out of you. When I first got diagnosed with Ehlers Danlos, a lot of stuff fell into place. My tiredness levels had been all over the place for a long time. I thought I felt how other people felt. I thought it was normal to get a solid 8 hours sleep and then find yourself at work the next day practically unable to look at a screen or even support your own bodyweight. I just thought this was what it was like to be tired and have a job.
The doctor I was seeing at the time assured me this wasn’t normal. He cracked a joke about how everyone with a job was tired, but that I definitely shouldn’t reach a point of not being able to hold my head up after a solid nights sleep and good diet. I never tested positive for anything else that could explain the tiredness, so because it’s a common complaint among Ehlers Danlos patients, I’ve accepted it’s something that’s just part of life now.
There’s only so much you can do to get through the day when your fatigue levels are a certain height. Caffeine does nothing, fresh air barely makes a dent and there’s little you can get from food or water. Sometimes all there is too it is listening to your body and doing what it’s desperately asking of you- sleep.
Not so easy to explain when you’re at work. “Erm, sorry guys, need to to pop into the stationary cupboard for a kip. Back in a hour yeah?” And experience has shown me that if you make real attempts at explaining your severe exhaustion, it’s likely people will think you’re making excuses. That’s not to say there aren’t employers and people out there who understand listen, because I’ve been lucky enough to work with them, it’s just generally not a symptom that can be understood. I imagine most people would probably be thinking ‘we all get tired hun, wind your neck in’.
Truth is though, it’s hard to even joke about, because it’s HARD.
I can go for days now without feeling any of the affects of CF, and I’ve definitely felt a steady improvement for the past year. When it does hit though, it’s like you’ve woken up in a cloud of fog. Everything you do is made harder by feeling like your wading through thick clouds. It’s hard to concentrate, hard to listen, hard to be productive and almost impossible to do tasks to your full ability. Imagine trying to do a days work with a huge, blurry bubble over your head that stops you hearing or speaking properly. The worst I’ve ever had it was about a year ago, when I was unable to hold conversation for more than a minute and couldn’t remember what any emotion other than ‘fuck off’ felt like.
Needless say, it’s not a great mood lifter.
There’s few nicer feelings than when a CF sufferer feels the fog start to clear. Like walking from a grey, rainy street straight onto a sunny beach. Everything just improves and you feel like you can see, taste, hear and even move around better. For a while last year I did pilates (gentle, beginners classes) and I started doing the stretches at home after work, and this seemed to make a slight difference. This was around the time I got on top of things and my bad days got fewer. Also exercise, as impossible as it seems to even contemplate when your gripped by CF, makes such a big difference. It’s all about breaking into it as gently as possible so you don’t make things worse.
If you have CF or a condition that brings it on in bouts, I feel your pain. It’s horrid, and as amazing and wonderful as bed is, there are times you just want to be able to leave it without having a small breakdown. (I say this laying in bed fully clothed, in broad daylight, but its like -2 degrees outside so I’ll allow myself).
Happy energetic vibes everyone.