Sunday, 24 October 2010

Emuna's Story

I started work at 16 and later went to University as a matured student. I worked when I was at Uni too - washing dishes in restaurants in the evenings and babysitting.

In my thirties I started work as a Probation Officer, a job I loved. I felt like I could make a difference to peoples lives. Over the years the job got harder and harder though. Case loads increased and we had to meet strange targets that didn't make sense to most people in the field. Every time we had a change of Government or a change of management in the Service everything would change and we'd have to re-learn our jobs. I got to the point where I felt like I was going round in circles. During this time I lost both of my parents and there were various other family problems to cope with too. Looking back I was very stressed.

Eventually I got ill - and nobody knew what was wrong with me. I was exhausted to a degree that is indescribable to someone who hasn't experienced it. I remember one day that I couldn't eat because I was too tired to chew. I had palpitations, strange aches and pains that were so severe I would cry and a range of different neurological problems. Every other week I had a sore throat and raised glands. I was sensitive to sound and had cognitive problems. My brain felt like it was foggy or full of cotton wool. For ten months I stayed in bed, hardly able to move, and still the doctors couldn't find anything wrong. I was frightened the whole time, thinking they must have missed something.

After a year my employment was terminated on medical grounds. There was a nice letter from the Chief saying he hoped I'd get better. I cried buckets when I lost my job.

Because they couldn't find anything wrong with me I was eventually diagnosed with M.E. I was told there was nothing they could do for me. I should go home and rest. I paid a small fortune to an osteopath for massage, which did indeed help and I was eventually able to get up and potter round the house for a few hours every day. A good friend who did massage and acupuncture treated me for free and these treatments relieved some of the symptoms temporarily. But I was still ill and if I overdid it I'd end up back in bed, exhausted and in pain. I eventually found out there was an M.E. clinic about ten miles away and I asked my doctor for a referral. (He hadn't known anything about it.) I attended there and underwent Cognitive Behaviour Therapy (which is about managing the condition) and was taught to do Graded Exercise which I continue to do. There's been some minor improvement but not much yet. I have to see the specialist at the clinic on a regular basis.

Through all of this I've been supported by Incapacity Benefit and I've been looked after by my partner, who I can't thank enough. We hadn't exactly planned to live together, but he moved in so my life would be easier and he could help with day to day things. He doesn't earn much and hasn't any specific skills that will bring in more money. I was told by my advisor at the Job Centre that I should apply for DLA but I never have. By the time I knew about this benefit I was basically too functional to make a claim. You see I can do most things now - but I'm slow and if I do too much at once I get exhausted and ill afterwards.

I'd love to go back to work but the medical advice I've had is to pace my activities carefully. I can do about an hours activity and then I need to rest for half an hour. And of course I'm not reliable. I still have relapses where I have to stay in bed for a couple of days every now and again. I can't see employers putting up with this.

I've been getting Incapacity Benefit since 2007. I'm told that if the new spending proposals go through that I'll lose this Benefit and my partner will have to support me. We barely make ends meet as it is. We've paired down our spending a lot over the past few years. I can't afford to have the heating on during the day, so we've installed a stove in the living room and he chops wood for me to use, so I can stay warm. I can't remember the last time we went to the pictures. Neither of us drink or smoke and we budget for everything. We buy our clothes from one of the cheaper charity shops. (Oxfam is out of our league!) I would say that life has got pretty hard where finances are concerned. I can't believe that it might get harder.

I paid tax for 35 years and it seems outrageous that I can't be financially supported whilst I'm ill. I'm lucky enough to have an illness that one can recover from, although it takes time. I hope to be back in the workforce one day and when that happens I'll be glad to pay tax to help other people who need it. In the meantime, however, I can't understand why the Government thinks it's okay to impoverish me and other sick and disabled people.

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