I’ve never before described my disability. I consider my problems to be much less disabling than those of the truly courageous campaigners that produced “Responsible Reform” (otherwise known as The Spartacus Report). But that’s what we do as disabled people; we try so hard to get on with our lives despite the pain and frustration, commonly saying “of course I’m grateful that my problems are nothing like as bad as those endured by X, or Y or Z”. It is a form of stoicism or maybe denial, but it’s part of that mental armoury that gives us our determination and optimism, even when we are in pain and we have to wait another 3 hours for our next dose of analgesia.
For years (since my 30s) I’d battled with painful joints. Initially mainly my neck hurt, but I was told it was down to bad posture. 10 years and masses of physio/osteopathy and painkillers later, after a battle with a totally unsympathetic GP, I had an MRI scan. Well, well severe osteoarthritis resulting in bony spurs that were pressing on the nerves exiting the spinal column.
I continued to manage this into my 50s. However a whiplash injury had aggravated it considerably and I was struggling with the fine movements in my right hand. This was crucial to my work as a nurse as it was making it impossible to draw up injections. I was forced to take ill health retirement following a long battle with my employer. Subsequently I have had considerable deterioration in knee and ankle joints and lumbar vertebrae, due, apparently, to the years I had kept fit by running!
Trainers that absorb the shock hardly existed 30 years ago.
The painkillers hardly have any effect! I can no longer use low dose amitriptyline or anti-inflammatories because of either the cardiac risk or gastric bleeding, which is a shame as they were remarkably effective.
I have seen a remarkable, lovely, pain relief pain consultant who has tried everything in his considerable armoury including quite scary nerve blocks which have failed to work.
All I want is to be able to walk a hundred yards without pain or get downstairs in the morning without the use of a walking stick.
I can only imagine what an unbroken, pain-free night’s sleep must be like.
I would love to be able to cook fresh food pain-free and not have to rely on the disgusting slop that is microwave meals.
For this I receive DLA Low Rate Care but I’d much rather be able to cook, and walk to the pub!