Sunday, 30 December 2012

My ATOS story - prologue

It's taken me years to feel sufficiently removed from these events to be able to blog about them.  This is a double-edged sword - time has softened the impact, but it's also removed some of the memories - and I'm not yet strong enough to reopen my several-inches-thick file to revisit the pain.

I didn't claim Disability Living Allowance when I first became disabled.  It was only after I had a severe outbreak of both spondylarthropathy and psoriatic arthritis that left me hospitalised for several weeks in Nov and Dec 2006 that it became apparent these were going to be life-changing, in a way that fibromyalgia hadn't been.  To explain these diseases briefly, fibromyalgia is also known as chronic pain syndrome - it affects the muscles, and apart from constant, inexplicable and incurable pain, fatigue akin to that of M E sufferers; severe sleep deprivation and concentration, cognitive and memory problems caused by both the lack of sleep plus the effects of all the various pain and other medications (usually anti-depressants used as muscle relaxants).

Spondyloarthropathy is somewhere between ankylosing spondylitis and rheumatoid arthritis.  It is an inflammatory arthritis that attacks the spine and every joint in the body. Psoriatic arthritis is another inflammatory arthritis that usually accompanies psoriasis.  I have been extremely lucky in that the arthritis presented before the skin disorder - this means that the medication I take has kept the latter at bay, and I don't have psoriasis to contend with as well.  PA attacks the joints in the hands and feet.  6 years on, I now also have the early stages of osteoarthritis - the ordinary wear and tear of joints that comes with age.

So basically my muscles and my joints hate me.  I take very strong meds that suppress my autoimmune system, wear me out when administered, and make me nauseous and my hair fall out.  But they keep me walking.

Life is a list of priorities.  Shower OR go out - not both on the same day.  Iron OR cook.  Study OR hold a conversation.  Recommended reading is the website called "But you don't look sick" - the spoon theory describes my life much better than I can.  But in brief - I have a limited amount of energy.  Getting out of bed spends some of my precious daily store.  Getting dressed a bit more.  Washing a bit more... So it goes on.  Exercise and healthy eating can increase my energy stash - but it can also diminish for absolutely no reason.

This is a sketchy outline of my life when I renewed my application for DLA 2 - or was it 3? years ago.

No comments:

Post a Comment