Clare's Story

I'm a lucky one, I can do some work. It may not continue though and like many, I'm terrified.

I've been exhausted for as long as I can remember. I remember walking along in a kind of dream state when I was 7 or 8. I never went out anywhere as a teenager, I didn't have the energy. At 19 I went to Germany to be an au-pair and remember the exhaustion of that. When I returned I went straight to University to study German. In a summer job in a museum in Munich I used to imagine making a den in the coaches that were part of the exhibit. I started to forget words. A nightmare for a linguist. That's when it got worse. In my year out, I developed an allergy and was prescribed a high dose of antihistamines. I just slept through the rest of that year. The next year I developed a flu that didn't go away and slept through my final year too.

After university (I just scraped through)I was the world's lousiest holiday rep. I then got a job working nights. I enjoyed the peace but I was doing a 70 hour week and then having a week off. That was the shift pattern. It was a call centre and I wasdoing a non call centre job while phones beeped in my ear. The phone always had priority, I developed stress and from that depression. It recurred once and afterwards I went back to the doctor and said "I was always tired, I was tired before the depression, during the depresion and I'm still tired now, I just assumed everyone was this tired and just coped better, I was wrong, I need help!" I was given a load of blood tests, they all came back egative apart from the inflammation level. The doctor shrugged.

I moved to Scotland where my family live. A wonderful doctor promised to keep on searching until she found something. I moved again not long after she retired. She tried, but nothing. I was diagnosed with CFS. At my new flat I had to walk up a long steep hill to get home and down it to get to work. I'd taken on a part time job working for the council. One day per week contract plus cover as needed. After several breakdowns caused by exhaustion, I didn't feel able to commit to more. In fact on being asked tocommit to another day per week I burst into tears and was sent home crying with exhaustion. I knew there was something with my sleep quality. I never felt that CFS fitted as I got to know people who had it. I begged for a sleep study but got more blood tests. Negative, except for the inflammation rate. Having been 42 it was now 41. Five years later. I hated the doctor who remarked (when asked to look into it) "well at least its going down!" Having just suffered the agonising secondary inflammation of the eye, iritis, I'm not impressed at all.

It was iritis that gave me my second ESA experience. My first was when CAB advised me to apply as my £400 - £700 per month was barely enough to survive on. They told me that I could do some therapeutic work and waht I did fitted. I applied. No one had heard of doing work while claiming ESA but the young girl took my details anyway. Eventually the pack arrived withj a leaflet on the work I could do. It seemed it would have to be heavily medically supervised. I wanted to appear professional and keep my pride. I gave up.

Then Iritis. It effectively blinded me in one eye for a month. I couldn't do the extra hours I relied on, I couldn't even read. I went out one Sunday for the papers and wept when I couldn't read. The next month my pay slip was £293 for the month. I had rent and most of my council tax to pay. I tried again. No joy. I applied, the paperwork came through and then on a call to the benefits office someone asked, "were you paid statutory sick pay?" I told her that I was paid £293 and it barely covered any of my costs. She repeated the question. I was. it turned out. I was therefore not eligible for any help, no matter how desperate my situation. So I'm a statistic. One of those people who apparently had second thoughts once we realised that the test would root out scroungers like us. Recently I've been told I was receiving too much council tax benefit and must pay that back.

So here I am, a linguist who can barely string a sentence together, who can sleep a 12 hour night and manage 3 naps through the day. A woman who regularly falls over or walks through closed glass doors, because while part of my brain sees the danger, the other half carries on regardless. A woman who tried to replace right words with wrong words and sometimes cannot tell the difference between a 6 and 9. Who's eyesight is failing but there's nothing wrong with her eyes. A woman who gets sick after doing 5 day weeks because I have to eat something. And that's before the spending review. How would I cope if I really were sick? *hollow laugh*

Sorry, that turned into a long story. How do you compress a life and a million symptoms and illnesses?