Being disabled is the most tediously difficult full-time job in the world, and it’s unpaid. The pandemic lockdown actually provided a respite from all the crap we have to deal with, but clearly offices are open again now and back out in full steam.
I’ve felt harassed from all angles over the last few weeks. Some of it, like my boiler breaking, and the plumber cancelling and rescheduling for weeks later, is just regular life bother. I’d call that ‘layer 1‘ of stress, which I can largely deal with, it’s all the other shit on top that gets to me.
So layer 2: managing my health. The skin around my catheter, which I’d finally thought had healed, has again erupted and torn. Cue arranging for district nurses to once more come and review it – you’ll never be given a time, but just have to keep all day free for them to pop in. It looks like my skin is allergic or reacting to something, but I’m going to have to see a specialist urology nurse to get to the root of the issue, which is another thing to arrange. I knew I’d been weak, but started getting headaches and feeling sore in my back, for me the familiar signs of a UTI. It’s harder to be sure without bladder urgency but I could see that my urine was cloudy. So I called the GP and arranged a urine sample to get tested. Back to nitrofurantoin, I definitely haven’t missed these antibiotics which give me constant nausea. It’s disappointingly my first UTI since I had a catheter inserted last October, so it think it’s just the manifestation of being run down.
So then we get to the worst layer, layer 3, which is the unnecessary stress and admin that you have to deal with as a disabled or chronically ill person.
- Moving home to my flat meant being reacquainted with my care agency, let’s be clear, 90% of the carers who come to see me are lovely, but it’s not that simple. My call times have been inflexibly stuck at 7am to fit in with the morning rota, which was fine when I was going to work, but when I’m working from home every day it’s really unnecessary. But whatever, this is my contracted time, I get it.
- My carers used to stretch my legs first thing in the morning and last thing at night, nothing major, just bending them and moving them from side to side to help release spasm. Apparently that constitutes ‘exercises’ which my carers aren’t trained in, and the care office says no. All carers have been told they can’t do them any more. It’s nonsense. They bend my legs just to put my shoes on, and I don’t see how this is any different. But I also know it’s a fight I can’t win without massively escalating it, which I don’t have the desire to do. I’ve gone back and forth already with my care office who seem set on the idea that they are exercises which should be administered by a physio… Anyone got any similar care experience?!
- And that’s not all, my NHS wheelchair cushion cover ripped. It’s never a simple job of just getting a new one sent out to me, I’ve had to wait in phone queues, had a technician out to assess it, and then had to call again to ask if they received it and arrange delivery… all for a cushion cover. A CUSHION COVER.
- The pharmacy where my parents collect my repeat prescriptions for me have said my prescription is now due a doctor review. These are my twice daily muscle relaxants which I have taken for years. Can the pharmacist just call my GP surgery to confirm that I still have MS and still need them? Of course not.
- I’ve also been getting persistent texts from the Royal Free Hospital asking me to sign up to their new patient portal online, I have zero faith that it will work, it’s just another way of pushing the onus onto the patient.
- My care agency left me a review form to fill in ‘in my own time’… It went straight in the recycling bin.
I want to scream and knock people’s heads together so much it infuriates me, and it brings me to angry tears. I already ignore as much as possible, but I truly resent the constant burden placed on the patient. I know people have to be kept in work and kept busy, but can’t they direct their bullshit elsewhere?!