Today I took my kids to the paralympics. For me who has severe CFS this was a massive undertaking and the journey has taken a week as I can’t manage the journey in one go.
Recently I had my DLA cut from higher rate mobility and middle rate care to absolutely nothing as apparently, according to the guidelines “moderate” CFS doesn’t count as needing care. Bugger anything that says DLA is about the individual. Every day i’m in agony, every day i’m tired and every day I have to manage what I do otherwise I hit the wall and can’t care for myself which as a parent who’s husband works full time and has a disability himself is a really scary prospect.
This summer I have spent 3 weeks in bed just so that I can have one holiday with my children. Due to my lack of blue badge and road tax exemption the money i’ve had available to make up for this has been cut drastically. My 6 year old daughter is my carer, making sure i take my meds and reaching for the snack foods and strategically placed water bottles when I am too tired to get them food for myself.
One comment which stuck with me during the opening ceremony was about the wheelchairs available to competitors. They pointed out that people in the uk had much better access to good quality wheelchairs but I don’t buy it. The voucher for mine was for around £200 – the average sports wheelchair over £1k. There is no way i’d ever be able to afford that chair – even if I still had DLA.
Yes the games were inspirational and yes I managed the day on my feet (thanks to tramadol and gabapentine) but the pain i’m now in makes me angry. I’m dreading tomorrow when i wake and can’t get out of bed and rely on my 6 year old to bring me my tablets.
The 100 yard rule needs scrapping. what flaming use is being able to walk 100 yards? woo hoo you can get into the supermarket, can’t shop there but you can get through the door! We are shafting a whole generation of paralympians who maybe think they either aren’t disabled enough or simply can’t get the funding to train or get equipment.
This week if i’d of still had my DLA i’d of brought a careworker. someone to help me with my meds and with the cooking, someone who could push my wheelchair and someone who could of helped me on the trains. Yes I managed but the pain in the morning is going to be something else.
My DLA paid for my painkillers, now it’s a struggle. It shouldn’t be like this……