I was born with a condition and have had dla/pip since childhood. My whole childhood was surgery in an attempt to improve my physical health, unfortunately due to negligence it ended up worse. I did work full time for a few years in an office job but couldn’t continue and as I’ve got older (still under 40) my health is declining rapidly.
I moved to a council property which has had some adaptations, a wet room with a seat in the shower and a wash dry toilet which has literally saved my life. I couldn’t clean myself after a pee or a poo and had constant kidney infections to the point I’d spent months on antibiotics so you can imagine the state I was getting into, now with the toilet I’ve not had a infection since it’s been put in a year ago! I have a carer twice a day to help with food prep, shopping and domestic tasks, I can walk but it’s incredibly painful and I’m unsteady (iPhone constantly sends updates with my walking steadiness being low/very low), I don’t have any movement in my toes and foot drop so I literally trip over on my own feet/toes, as well as having one leg shorter than the other. I have falls weekly, worst case I lost my front teeth in one as my arms are too short to “save” me. I have an electric wheelchair which I use to go locally, I did have the adapted car but couldn’t afford the petrol it took to take the wheelchair anywhere so now I go out a lot less with the car as it involves having someone with me to take the chair apart etc.
I also have spinal stenosis which was sorted with a fusion but that limits my mobility more, and with age I’ve found that the damage the original stenosis caused is coming out more now, I get a lot of numbness all over my body and weakness.
Despite all of this I’m on very limited pain as I’d spent so long in my younger years on them and became addicted to morphine and baclofen that I’ve been put off, going through cold turkey at 15 from spending 4 years on them was enough to up my natural pain threashold. I do have a young child and I feel incredibly guilty that we don’t do much at all out of the house, and how scared he gets when I fall.
I constantly feel like a fraud though, I think part of it is the fight in my head not to give up or give in, and I am clinging on to the tiny bits of good days I have, I worry I’d be accused because one day maybe I made it round the small supermarket clinging onto the trolley but that person didn’t see the next 3 days where I didn’t move, or once I’ve dropped my son at school that I’ll then lay in bed from 9 until 2. I don’t think the constant media thing of targeting the disabled helps. And I’d be the first one to get a job from home, I’m reasonably intelligent and as I said had a good job before which I loved, but it’s easier said than done with this working from home business, there’s a lot that isn’t suitable or I simply don’t have the qualifications for. I dream of financial independence from the state and I know that it’s a dream of many disabled people, this life isn’t a choice.
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in office up to 60%.
