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Emily Jacob

Today was a codeine in the afternoon day. I’ve been trying to avoid taking the codeine, except in emergencies, and really only at night, so that the pain won’t keep me awake. I got through to about 2.30pm today and just had to. And, the pain got more bearable, so I’m glad I did. Really trying not to cultivate a codeine habit though, I have a feeling that’s not going to be a helpful addition to my vices…

I found out that this diagnosis comes with the disabled label when a friend suggested I look into applying for PIP. I was convinced that was a stupid idea because I am still outwardly ‘normal’ (except the neurologist did use the word spasticity when doing all the tests on my body, so there’s that word too…). I can get from A to B. Sometimes slower than I would have before, but I can get there. What people don’t see though is that after I have got from A to B when I am back home, I collapse in a way I have never collapsed before. There is no doing, there is no nothing, only horizontal and sleep if the pain isn’t preventing it. Some days, it’s a walk up the road to the shops that does me in. On Friday it was the two hour meander to Port Meadow and the loop around the canal back home. Today, it was walking up the stairs. And the day after exertions, the pain is there bigger and bolder than before.

Well, I decided that I’m not going to apply for PIP yet, whilst daily living is not what it was, I can still cook for myself, wash myself, keep the house clean. It hurts. It wears me out. But I can do it. And the same goes with mobility, I can get around. Mostly. Anyway, they want those issues to be happening for 3 months before applying too. And it has been. But I guess I am in the place right now where I don’t think I’m ill ‘enough’ to qualify, because in my head disabled means more than what I am. At the speed this isn’t getting better (I don’t want to say getting worse, because they said it’s relapsing remitting and so it really shouldn’t be getting worse, but the MS nurses told me to up the gabapentin dose anyway…), at the speed this isn’t getting better, it feels like it won’t be long until I fit even my own definition of disabled.

I object to that term. I object to being made a victim by my body. I object to feeling like I am now wearing an identity of less than. And why do I equate disabled with less than, anyhow? That’s just an ableist privileged discriminatory perspective that takes no notice of all the amazing humans who certainly show every day how they are more than. I know I’m still processing everything, and I know that some of this will come across as really offensive and insulting to those of you reading who are in some ways disabled and know that you are awesome. Please accept my apologies, I am learning and processing, and I think this will be a journey for me. I hope I’m not still upsetting anyone when I’m in a wheelchair. And I do expect to be in one. I think that’s where so much of my fear and resistance to the labels is coming from; I live in private rented accommodation, I have lots of debt, I have no-one except friends to take care of me, and I will not put my friends through that. The prospect of not being able to support myself, or be independent, is terrifying. (And for those of you who would say, if you see yourself in a wheelchair, then you will be in a wheelchair, fuck the fuck off. I’m a coach too, and I know, and also I know.) – yes there will be lots of swears in these blogs. Deal with it, or click on by.

I’ve written about labels before. Labels are unhelpful. I am not this disease. But I am disabled, and some days I feel it. Being made a victim through the rape meant that I felt broken, it meant that I felt like I was sentenced to living less than. And eventually, I overcame that label, and refused to be a victim, and refused to accept that I had to live only one day at a time. And I decided that after post traumatic stress, there really could be a thing called post traumatic growth, and I could become more than I was before. The thing is, with this, I don’t think there’s a more than. I just see degeneration and decline in my future. I can still do things, of course. The limits aren’t yet known, but the thing is, there are going to be limits.

I know this is a process. This is about four and a half months since the symptoms first decided to show up and take root. I am supposed to be going through all the stages of anger, denial, grief, etc before getting to acceptance. I don’t want to accept this though. My Mum said at the weekend, it would be easier if I did just accept it, as there was nothing else to be done. I vigorously don’t agree. If I had just accepted that life was going to be full of daily panic attacks and I would always feel broken by the rape, I would never have overcome it. There is a passivity in acceptance that just isn’t in my character. Right now, whilst anger really isn’t me either, and I usually turn it in on myself, I am more channelling Dylan Thomas and raging against the dying of the light.

Disabled. It’s a label. I don’t like it. Applied for my London Underground please offer me a seat badge though. Might even wear it.


(A note on my writing. Usually my writing is better than this. Usually my writing flows. Like the first blog, this one feels really sticky to me, clunky in places, lots of different ideas not quite landing, going off on tangents, not finishing the point. I’m assuming at some point I’ll start getting clearer on what I feel about this disease, and that will come out in the writing. And anyway, this is for me, and if you want to read it, that’s just extra). Thank you for reading xx