Person with ME


My story - Jan

I have been an M.E sufferer for 18 years of which I have probably spent half of that time bed bound and housebound. I am now 43 yrs old. My life with this illness has been one long rollercoaster, regaining my health at times and then plunging into devastating relapses where I am chronic, unable to walk talk and function in any way.

For the first time in 18yrs I have applied for Disability Living Allowance, before now I have spent months at a time having to live with my parents, needing their care and support. As my parents are now getting older and it is quite evident they are unable to support me on that level any more, this was my reasoning for applying for DLA, so that I can feel safe in knowing I can pay if necessary for care and mobility.

Yesterday I received the letter from the DLA with a decision that I would be allowed the lowest rate care component, which is 16.50 per week. I feel really disillusioned with this result, I am so optimistic about life and have battled for years educating myself about this illness, raising awareness and fund raising when able.

Like most other M.E sufferers I could write a book on some of the injustices I have been through over the years. One recent incident which stands out in my mind, because it only occurred this year was in early January, I relapsed in the previous November and I was incredibly ill. I had spent days bedridden, this particular day my partner had made an emergency appointment at the doctors, I was in a terrible place, seriously contemplating suicide, I couldn't't sleep, couldn't cope for another second with the constant pain. We arrived at the doctors and the female doctor refused to see me, saying I was not her patient, and she wasn't prepared to see me. I was just in a state of shock and my partner was furious. The Doctor in question didn't come out to the waiting room to see me, instead wrote a prescription for three months of anti-depressants, (of which I already had three months supply at home). Looking back, for the Doctor not to have the decency to take the time to see me and then to prescribe medication with which I could have done serious harm is beyond belief.

Like I said previously, I love life and I am the internal optimist but are times changing regarding this illness? Are attitudes changing? Are medical views changing here in the real world? I am not so sure they are.

Tired of the endless battle
Love to all