Not sure where the time went, people. So I’m now about two weeks (er, or more?) into this particular crash. No, hang on, it’s definitely more. Four weeks? Three?
The stuff I wrote before about being able to hold myself through the process of the crash. Yeah.
Crashes don’t work like that, do they?
I don’t have a lot of time or spoons to write much, because I have to try to work. I was forced to take all of last week off work — and off everything — because I have a big work conference to deal with this coming weekend, and it was starting to look like I might end up so ill I wouldn’t be able to go. It was starting to look like I might end up so ill I’d have to quit work altogether. So I took last week off to ‘rest’.
ME is an illness that I think has a particular, ironic, cruelty about it. Resting means not doing anything. But unfortunately my overstimulated brain isn’t able to follow that direction. When I’m in an ME crash, I can’t read, I can’t watch TV or a film (unless I’m being stroked), I can’t do most crafty things because my brain doesn’t even work well enough to be able to understand how to do them — and sometimes it feels too tiring even to hold my arms up to sew or paint or varnish. So what happens is I lie in bed and my brain does its worst. I haven’t even been able to meditate for the past week because I haven’t had the energy it takes to concentrate in that way. I’m at the mercy of my thoughts. They are not kind thoughts.
Unsurprisingly, on top of ME I also suffer from clinical depression and anxiety. Fifteen years of illness, and mistreatment around that illness, will do that to a person.
What I realised, though, is that I am constantly fighting and fighting and fighting. You can’t survive an illness like ME without doing that. I have fought my whole adult life. But I don’t just fight in the areas I need to. I fight in the ones I don’t, too. Everything is a battleground for me. My body, my mind, my heart, my relationships, food, spirituality, creativity, my family, my cat, my home, my hobbies. I wake up every morning and as soon as I open my eyes, I’m fighting. Fighting to get out of bed. FIghting to get washed and dressed. Fighting to do a few hours work. Yes, those things I have to fight for. But I’m also fighting to get washed and dressed and looking amazing. I’m fighting to do my job *really, really well*. I’m fighting to be the best possible parent to my cat and constantly feeling guilty because I don’t spend enough time playing with him. Fighting to write an amazing novel (been working on that six years and counting). Fighting to prove that I’m worth something. Fighting to be a wonderful human being. Fighting to eat the perfectly nutritious diet that will cure me. Fighting to find the idea regime of alternative therapies that will give me all the spoons. Even my PIP appeal — I wasn’t just fighting the DWP — I was fighting to do the absolute best possible appeal and beating myself up the whole time because maybe I was missing something.
I think fighting can become an unhelpful habit, for people who are forced to fight in many areas whether they like it or not.
One thing this crash has shown me is that I can stop fighting in *some* areas.
Edited Sept 2018 to add: this crash I’m talking about above actually went on for four months and at the end of it I was looking into Dignitas membership. Things improved before I had chance to join, but that’s how hopeless it got. I am very, very glad I held on because I haven’t had a crash as bad as this since, and in fact have since got a few correct diagnoses and have much better ways of managing my health than I used to. So basically to anyone in a similar situation: please hang on. Things CAN get better. Feel free to contact me and if I can help in any way I will.