So, as I’m sure you’ve heard, the government are putting pressure on disabled people to work. Perhaps if all the bureaucracy around being disabled were easier to manage it might be more realistic. Let’s look at a week in my life balancing being disabled with working:
Monday: day off. Wake up at 8.30. Carers are with my 8.30-9.30. Carer comes back to my physio appointment at 12 which means leaving at 11.30 or earlier in order to get a blue badge parking space at the hospital. Physio appointment includes prejudice and inappropriate treatment. It wipes me out and we get home by 1.30. I’m supposed to meet with CQC inspectors at some unknown time today about my care agency. They never turn up. Carers are back 5-6 and then I’m asleep by 7.30. At some point I needed to ring the taxi company that take me to and from work because taxis keep failing to turn up. Add onto that my dislike around phones and that simple task becomes huge. I also needed to speak to my social worker about social housing.
Tuesday: work (I do work 3 days a week). Wake up at 7.15. Carers 7.15-8.15. Taxi due at 8.15. Most of the time it’s getting on for 8.30 before it arrives. I have to wait outside because I use my wheelchair and I can’t get it into my house. This leaves me cold and in increased pain before I’ve even got to work. Finally get to work, which isn’t as accessible as it should be. Battle people’s prejudice in the work place. The struggles around actually being in work (despite numerous access to work assessments) is a blog post of its own. Go home. Or I would if the taxi turned up… Carers are waiting for me when I get home and leave at 6.30. Bed by 7 on a work day. Exhausted. In pain. On work days I basically do nothing except attend work. I have no energy or spoons or time for anything more.
Wednesday: day off. Carers 8.30-9.30. 11-12, seeing my cpn. She has to come to my house because the place she works is inaccessible. I find appointments quite tiring. After lunch and resting a while I then chase up my wheelchair appeal. I also have to sort out seeing a house with my social worker which involves ringing the taxi company again. Carers are back 5-6, I’m asleep by 7.30. Days i’m not in work I will try and get something creative done, depending on pain and energy levels.
Thursday: work. See above.
Friday: work. This is the hardest work day because I’m still exhausted from Thursday. Before I start work I have to see my psychologist so i don’t get to work till 11am. Thankfully my work are incredibly good to me because this is 2.5 hours a week when I should be in the office.
Saturday and Sunday: similar to my days off but Saturday is hair wash day and Sunday is body wash day. Both are exhausting and painful and take a lot of time. I can’t get into my bath/shower so we have to sponge wash me. It’s cold and undignified. If I want to go out, I have to do so when my carers are here because I struggle with my locks. On a good day I can manage them once in the day so they either need to be there to lock up or unlock. On a bad day I can’t manage the locks at all. I also can’t get my wheelchair in my house so going out means I have to get a carer to put it outside or I have to struggle to get it out of my shed.
In addition to the above, I need to do regular physio, all the normal life admin, manage meds, sort out mistakes in care rotas, go to regular gp appointments, sort out benefits etc etc. All whilst exhausted, in severe levels of pain and battling mental illness.
Because my pain is getting worse, I’m struggling more and more to actually make it to work on those three days. In addition, getting cold whilst waiting for unreliable taxis and having to chase taxis and argue with the taxi company (yes I did book a taxi…) makes me start to wonder if it’s really worth the amount of mental and physical effort work takes out of me. Just getting to work in the morning can be a feat of its own.