Why I'm so pissed off

I was recently asked if it was tiring being pissed off most of the time. I explained that I’m pissed off and negative because I’m in constant pain. It makes me grouchy and colours my world view. It’s hard to be upbeat and positive when you hurt every minute of every day.

While it’s true that I've always been a glass half empty kind of person, I used to be much happier than I am now. Two short years ago I went out to work, I’d go out several nights a week, I was dating, dancing, going to gigs, going to Pilates and Zumba, going out for dinner with my friends and I was losing weight. Now, I work from home and, since April, I haven’t left the house except for hospital appointments. Walking is painful and exhausting – dancing isn't even an option. I haven’t seen any of my friends since November and my only social interaction is occasional phone calls with my work colleagues and a visit from the Tesco delivery man on a Wednesday. I've also gained back the 100 lbs I lost, plus a bit extra, through inactivity and, yes, comfort eating. Food is my drug of choice – particularly chocolate – and I've been self-medicating in an effort to cheer myself up, but it clearly hasn't worked. I was prescribed antidepressants 18 months ago because I wasn't coping well with my situation. They have helped, to a degree, but they’re not a magic cure-all and I still get depressed from time to time, although I’m mostly on an even keel. I had a hard time back in February, when I seriously considered killing myself. The notion passed and I haven’t entertained the idea since, but that’s not to say I won’t some time again in the future.

Being in pain all the time is exhausting, as anyone in the same situation will attest to. I've never coped well with pain. Pain makes me very bad-tempered, so with my being in constant pain it shouldn't come as any surprise that I’m pissed off a lot. I’m also angry about my physical condition. I’m only 43 and there are many things I’d still like to do before I die, but my circumstances prohibit. I have no helpers – no partner, no family, no friends – so it’s all on me. If I don’t (or can’t) do something, it doesn't get done. There are people who are far worse off physically than I am, but they have assistance that makes their lives easier, a luxury I don’t have. And, while I could approach Social Services for help, I’m not comfortable with the idea of a stranger coming into my home to help wash and dress me or cook and clean for me. I’m not ready to give up my independence and would rather struggle on, so struggle I do.

And it is a struggle. Getting out of bed can be a struggle. Washing is a struggle. Cooking is a struggle. Anything that requires physical effort is, basically, a struggle. And the thing with MS is, you never know how many spoons you’re going to have in a day. You might start the day feeling awful, then perk up mid-morning then, suddenly, mid-afternoon you hit a wall and you just want to curl up on the spot and sleep for a week. It's a painful, exhausting, unpredictable bastard of a disease and I’m royally fucked off that it’s robbed me of the joy I had. I can’t even read a novel anymore, as my memory is so poor. I forget who characters are and plot lines and get totally confused, so I've given up reading. I used to be a voracious reader, so it’s a huge loss. I watch a lot of television, but I have to watch series episodes back-to-back, as I forget what happens from week-to-week. I used to have a really sharp memory – I could recount entire conversations and was often called in to settle disputes between my friends, as I knew who said what when – but now I’m lucky if I remember what someone said to me 5 minutes ago. If I don’t write everything down there’s a high probability of it being completely forgotten.

This isn't a tale of woe (although it sounds like one!), I’m just trying to explain my reality and how much my life has changed. I hate what my life’s become. The same person who asked if it was tiring being pissed off also asked why I used the word hate so often. I think it’s quite appropriate in this instance [hate: to dislike intensely or passionately; to feel extreme aversion for or extreme hostility toward; to detest]. I’m a passionate person and feel things strongly. There are lots of things in the world worthy of hatred – bigotry, violence, poverty, disease, the Tories, the EDL, Marmite, celery, etc. – and my MS is one of them. I’m only going to get worse, as there is no cure, and I think I have every right to be pissed off about that.