Sunday, January 15, 2012

A Personal Story

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!


Anonymous said...

Thank you for you very eloquent blog. I have a very similar condition to you. I work four days a week, and the rest is a blur of hospital appointments, painkillers and sleep. It's extremely hard to keep going, but I look into the frightening black hole that is fast becoming the welfare support in this country and kick myself to keep plodding on a bit longer.

Keep strong x

misspiggy said...

Hi Mark. Thanks for your very moving story. This may be irrelevant and you may already have looked at this, but have you considered taking the anti-inflammatories anyway? My GPs withdrew them for the cardiac and digestive reasons mentioned, and I quickly went from 'just coping' to 'barely able to move'. So I insisted on going back on them. I take 20-40mg of Omeprazole daily to protect my stomach, and a recent investigation found that it was all undamaged. Obviously this might not be appropriate for you, but for me having a better quality of life now is worth almost any risk. And doctors do have to respect a clear decision from you despite what their broader policy may say.

Mark said...

Anon: Thank you for the comment. It's taken me years to accept I'm "disabled", that's part of my determination to keep going even when my joints are screaming! I had a brilliant part time job at a "major DIY chain" but eventually had to give it up when my ankle couldn't deal with the standing. I was offered an office based job but would have missed the shop floor too much.

Misspiggy. Thanks for the suggestion but regrettably it's a real "no go". I'm fortunate in having the most amazing GP,Cardiologist and Orthopod who talk me through all possibilities as an equal; the advantage of my having been a senior nurse! Until there's another option I have to stick to topical anti-inflammatory gel.

Ms Humphrey Cushion said...

So glad I read this today, I have a similar sounding neck complaint to yours and have been offered psychotherapy in the past for it, grrr.

Recently, my new GP referred me for physiotherapy, hurrah.. However, the physio isnt convinced, nor am I that my neck issues are merely the result of an injury 2 years ago. I am certain that this is OA, I have it in my feet, shoulder joints, hands and hips already so why not my neck as well? I dont do things by halves ;)

I stopped taking painkillers a week ago in order to truly understand where my pain is and what form it takes.. kinda wish I hadnt tbh!

Currently trying to force, I mean persuade my daughter to have driving lessons as I know my mobility is more compromised by the week and this rotten government will do f.a to help me.

Old gits united..!

Mark said...

Ms Humphrey Cushion. Once I'd had X ray and MRI it was so obvious that it was OA.
Psychotherapy! Oh god, some docs really are incompetent w@nkers!

Mark said...

STOP PRESS! I've seen a "Consultant" Physio who has given me exercises to build the muscles around the inflamed ligament I think that's what he said! As I consequence I've started to walk more normally with much less pain. It's early days, but I'm walking further than I have done for nearly two years. Miraculous!