“I think a lot about chronic fatigue syndrome. It’s symptoms sound awful, like a flu that will never ever end, that drains you and makes you an exhausting burden on your family and friends until you finally are just an idea of a person” Not That Kind of Girl, Lena Dunham
Out of all the definitions of chronic fatigue syndrome (CFS) that I’ve read this has to be the most accurate, and humourous. It beautifully explains how you physically feel in relation to yourself mentally and emotionally.
You do get physical symptoms of flu, colds, feeling run down and drained. No amount of sleep helps, or food. You’re consistently tired and always want to sleep but I, personally, could not always sleep due to my hormones being flat out. This is what’s known as “tired and wired”. It’s not a tired that most people know, it’s a dull mind, bleary eyed, achy bones and joints, sore muscles, restless mind, feeling jittery, deadened emotions, confusion driven, always buzzing tired. It’s these physical symptoms which lead to the emotional and mental symptoms and vicer versa. You start to get restless and frustrated that you can’t do the things you want to, or function at the level you would like to or need to. You start to feel intense loneliness and isolation and for me old thought patterns came storming back in. The worst part of all this is you have absolutely no idea why, or exactly how this happened. You not only start to feel like you are “just an idea of a person” to some people, but also to yourself. Whoever you were before, or thought you were, has some how slipped away and you forget everything that you were, everything that you were good at and everything which brought you joy.
You can’t go anywhere without a personal curfew (I was fortunate that I could actually get out), you’re constantly trying to avoid certain foods to help with energy levels and recovery and if you are at a party you get to a point (pretty quickly) of being completely peopled out and all you want is a sit down with a close friend who you have a deep relationship with to energise you again.
Becoming an idea to others and yourself is a step in the wrong direction which not only I took but I’m sure other sufferers have too. This is where CFS starts to kick you in the face when you’re already down and it really doesn’t care about it. You’re so tired that you just can’t do anything other than think about getting to work, or the shower, or trying to eat and then getting back to bed. My first thought in the morning was, ‘When will I be back in bed? Ok, go!’. Work and bed was basically my life for two years, in my mid to late 20’s. Like I said, I was a functioning chronic fatigue sufferer. You essentially feel so tired that even when, yet again someone says, “it’s all in you’re head”, or “you’re just getting older”, you barely have the energy, in any capacity, to argue back and as Dunham says in relation to ME, which she had, “I was too tired to crumple my face when I cried”.
Letting yourself slip into depressive thought patterns and forgetting all about who you were and are is one of the worst things I probably did with CFS. You start to believe that you are just getting old and that maybe everyone gets this but you just can’t handle it like them, you start to feel completely lonely and isolated because people don’t understand and you can never go anywhere, and you start to believe that maybe just maybe it is in you’re head, even when you know deep down it’s not. You try to hold on and do things you enjoy but you’re so tired that even that is a chore and you gradually let those negative thoughts in and let your former self slip away and the whole time you keep feeling the pressure to live at the same pace as the rest of the world. At the same time if you don’t have people around you who love and care for you and know you well enough to remind you of who you are, you simply end up between a rock and a hard place. Whatever effort you seem to put in, without those people around you, I believe, recovery is significantly harder. I was blessed with a few friends, six months before I was diagnosed, who had experienced CFS first hand, along with other individuals who came in and out of my life at the right points.
CFS is a disease which not only renders you physically incapable but also renders you emotionally and mentally insignificant. CFS is a real thing people, please be compassionate to those who do have it, may have it and if you have it please, please, please be compassionate towards yourself. You will get there. Keep an eye out for more CFS posts and adreanal fatigue posts.
Thankfully CFS has just been officially recognised as a disease by