I’ve been realising recently my body’s reality. I went for a job interview recently for a full-time role. It was something I think I would have enjoyed and felt fulfilling, but the hours and amount of admin work is what made me think. It was 7 hours a day, 5 days a week, every weekend (or at least every other weekend) at £8 an hour. Maybe up to £10 if I proved myself in the role.
My health isn’t steady and predictable like a full-time job. There are lots of things I can technically do. I have use of my legs, so technically I can stand. The impact of standing (or sitting, or walking, just doing anything for extended periods of time) is what healthy people don’t understand. I’m always in low levels of pain, some days it will just be worse without reason. Some activities will exacerbate it.
One part of my disability in particular that has become increasingly debilitating is the use of my right arm/hand. This is my dominant hand. I do everything with this hand. Overusing it means I can’t grip things properly, there is weakness in the muscles, or searing and burning pain. I can’t write for long, it will hurt. I can’t use a knife to cut certain foods at dinner as my joints lock. I can’t carry things. I’ve found recently I can’t even use a mouse/track-pad comfortably if the pain has been high. I’ve been trying to do some DIY recently; I can’t even paint the shelves I’m working on. It all hurts so much. Things you take for granted.
Brushing your teeth, opening doors, using a hoover, holding a glass, holding certain kinds of mugs (I’m looking at you, Costa! Your mugs are ridiculous and I always have to ask for a takeaway cup…).
It’s a throbbing pain when it’s resting. My disability even makes it hard to stretch out. I have hyper-mobility syndrome, I’m too bendy because my ligaments are stretchy etc. etc., so I have to get creative with the stretching to finally get the right muscles. Half the time it has been so bad recently I’ve had to ask my mum to rub it and I hate asking people to help reduce my pain.
And then all the fatigue that comes along with being in so much pain all the damn time. Even if I sleep well, I will still feel tired and if I don’t it will hit me later and I’ll feel like I have the flu. Total exhaustion, dizziness, hot/cold, all over aches. I normally burrow myself away into a dozen pillows and a soft blanket, my recent addition is a very soft and warm onesie. Another addition is evening headaches or migraines. I had to ask my mum to stop crumpling paper next to me because it felt so loud. It felt like someone was slowly digging a screwdriver into the bit between my eyebrow and tear duct.
So I feel this renders me pretty ‘incapable’. I did email this job and say that a part-time position would be best for me if they had any available and I had lots of ideas for the job. But I’m not sure I’ll get a reply.
For now, I’m working on my left hand dexterity (it’s pretty useless but I have got enough things to do to practice!) so that I wont need to use my right hand as much and will still be able to get things done whilst I await a neck scan to see if there are any pinched nerves or slipped discs that could be causing all this pain in my arm. I’m looking into applying for ESA if this is going to be my long-term, but otherwise I’m still doing to same old same old of trying to earn a bit of cash where I can. Right now, I can’t imagine living independently. My family take care of so much for me right now, I guess this is where I need to be.