Dear Sirs,
I would like to tell you a little about myself. Please understand that people who have M.E. / CFS are often not honest about how ill they are. It is an illness that people cannot see, so people pre-judge and second guess us all the time. People do not like to hear about how ill you are. Therefore we put on a face most of the time, pretending we are healthier and happier than we are. As such, it is extremely difficult to do an about turn in our heads; to be honest about how ill we are, even in the context of a medical assessment.
In order to attend the medical assessment I took complete bed rest the day before. My ex husband drove me to the assessment as I would not have managed the journey by public transport (due to anxiety at being alone in public, anxiety at meeting the deadlines, and the likelihood that I’d be so tired on the return journey that I’d get lost). It took an hour to drive there, and an hour home. We were at the medical centre for approximately an hour too I believe. Following the assessment I crashed; CFS is a fluctuating relapse remission condition, when I refer to a ‘crash’ it means a mini relapse. A crash for me, at the moment, means becoming bed bound again. I was bedbound following the assessment for nearly two weeks; this means that I was bedbound when someone from the DWP phoned me to tell me I had failed the assessment.
As a side note, I would like to say that it is unfair that the fact I am well versed in my illness is used against me. I have been ill for ten years; if I was not familiar with the condition it would be surprising.
As I write this, I am wearing dark glasses because at the moment I cannot stand the light. I slept on the settee last night because my legs are very unsteady at the moment so I am scared of falling down the stairs. I am still wearing my pyjamas, as I do not wish to waste the spoons (I hope you know what that means) in getting dressed, particularly when I will not be leaving the house today. I feel giddy and nauseous, but will not throw up, so know I will feel this way all day. My legs have the burning dull ache in both the calves and thighs that I have come to refer to as ‘CFS pain’ (as opposed to sciatica). I am drinking a small glass of water, because I dropped the bigger glass yesterday due to my hands being unsteady. My ability to multi task has completely gone; every distraction is causing me to have to re-read what I have already written before I can work out what to write next.
A picture of my life before I was ill:
• I weighed 9 stone.
• I worked a full time job in the marketing department of a Biotech company. I loved that job. I had fantastic colleagues (except my line manager, who was a bully). I adore administrative work, so was completely in my element.
• I went swimming three times a week; swimming 50 lengths each time I went.
• I went to nightclubs with groups of friends.
• I attended morning and evening church services on Sundays, and church meetings on Wednesday evenings. I attended two other church groups during the week.
• I also still attended the university Christian Union on a Thursday evening.
• I did shopping for elderly people who couldn’t shop for themselves.
• I worked part time in Oxfam on Saturday mornings.
• I spent time preparing food for, and walking around town giving it to the homeless.
[Sorry, I do not mean to sound like I was a saint; this is genuinely how my life was. It is supposed to illustrate how active I was.]
• I played the cello, piano and recorder, and spent time singing with my friends. Creating music was a passion.
• I left the Biotech job due to bullying from my line manager. I did not claim benefits, even temporarily, but sought work. The only job available at the time was working part time in a retail shop; Game. Again, I loved the job. I love being on the front line dealing with people, helping people, and again, my colleagues were great company and great fun.
I left Game due to ill health. It got to the point where I was only getting out of bed to go to work, and then going straight back to bed after work. My manager said to me one day that it was ridiculous to keep forcing myself to work, so we agreed that I should resign.
Here is a comparison of my life now. It is not a description of my illness or how ill I am.
• I weigh 11 stone. The only reason I weigh as little as 11 stone is because I lost two stone last year when I was bedbound and unable to eat. Obviously, no one likes being overweight; if I could be active I would not be overweight.
• I have no friends in my area.
• I cannot go swimming or clubbing.
• I attend no religious or social groups.
• I can do no good works for anyone, and dare not offer my services for voluntary work because of the unpredictability of my condition.
• I cannot prepare adequate food for myself, let alone others. In the assessors notes she says I can stand to cook a meal. I cannot. The only cooked meal I can prepare is a baked potato, of which I have several charcoal lumps in my bin because I often forget they’re in the oven.
• I cannot cope with music, so cannot sing, listen to music, or play my instruments. Listening to music makes me giddy and nauseous.
• I sit alone, at home on a settee, all day, every day.
• I have the TV on very quietly for the noise. The assessor said that I like to have the TV on. This is not true. I pay little attention to it. The reason it is on is to protect me from anxiety. I am still living in the marital home, but my ex husband does not. He has issued various threats and behaved very strangely, and he still has a key. When I do not have background noise I become anxious at every sound, in case it is him entering the house.
I do not enjoy being ill. I do not enjoy spending all of my time alone, in one place, being unable to focus on hobbies, follow storylines in TV programs, etc. I hate having no social contact. I miss being around people, going out with colleagues from work, socialising with friends in the evening, and I miss the contact of dealing with customers throughout my day. I even lost my husband because he could not cope with my being ill. I feel like I am living in nothing land, waiting and waiting for this illness to go away so I can continue with my life again. I do not enjoy my life being on pause. There are so many things that I want to do. I have been patient, but facing the reality now that I will never do some of those things, is very depressing. I will now probably never have children for example.
Is it really worth my while to sacrifice my life, everything I had, and everything I wanted, for a measly £67 a week?
For your information, my aspirations are to recover from this curse of this illness, and to then help those in my area with their fight against M.E./ CFS. I want something good to have come from this nightmare.
I apologise for this letter being so long, and so emotional. Your system is not designed to assess conditions like M.E. / CFS, so this is the best way I can think of to help you see that I am not a scrounger, a malingerer, or a fake.
Yours faithfully,
Olana Voljeti.
