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Life with Chronic Fatigue Syndrome (M.E.) ‘I feel like I’m crawling through the dark with an elephant on my back’

Myalgic Encephalomyelitis (M.E.) also known as Chronic Fatigue Syndrome is a chronic, fluctuating neurological illness. It is estimated that in the UK around 250,000 people are affected by it to varying degrees. According to a report last month from charity Action for M.E., more than one third of Primary Care Trusts don’t commission specialist services for M.E patients or cannot confirm they do. M.E. Sufferer Nicola Cousins talks about her experiences of living with the condition.

I have had M.E. for 15 years but it is at its worst now. I am a talented painter, sculptor and photographer but no longer have energy for my much-loved craft projects, let alone keeping my house the way I used to and cooking for my family.

My worst problems are headaches, cramps, all sorts of tummy problems and being so tired I feel like I’m crawling through a fog in the dark carrying an elephant on my back. My skin crawls with hot and cold pins and needles and I have breathing problems.

I also take medication to help with the panic and anxiety I feel is a result of the M.E. I have spent a crippling six years trying to get over panic attacks. Due to accompanying agoraphobia, I was trapped in the same walls for more than four years. My family watched as I walked around like a ghost, scared of my own shadow, not able to eat or drink anything without diazepam to help me cope.

I waited six months to see a neurologist last year. Dosed up to the eye-balls with drugs to help me get there, I was with him for just five minutes when he said, ‘You M.E. people should stop looking for a diagnosis and get on with your lives’. I cried all the way home. There is no treatment available in my area and I am fighting to be able to see someone 12 miles away. Yet I go to the same hospital for everything else and I have not asked for help with my M.E. in 15 years.

My M.E. has been traced back from when I was a child. I suffered with repeated throat infections and lived on antibiotics. As an adult, I moved jobs continually as I would work well for some weeks, then need a week or two off in order to recover from severe tiredness. I had to pay £120 to see a specialist who told me I had M.E. in 1997. My GP would not fund it and I was at my wits end as to what was wrong with me.

In the beginning I was able to remain at work. I guess I was in denial as on good days I would do as much as I could. On bad days I would have no option but to stay off work and rest. No employer wants to pay for a full-time worker to be part-time. In the end I had to give up full-time employment because I was falling over and getting headaches. It put a lot of stress on my marriage as my husband at the time could not see I was poorly, he thought I was just lazy and we started to argue.

My brother already had M.E. so it was not a new thing in our family and my mother has Multiple Sclerosis, so I was caring for her on and off at that time. I took on four or five cleaning jobs for big houses around my area to try and keep money coming in. I stuck at it for four or five months but it got to the point where I could not walk up stairs anymore. I was getting vertigo and sickness attacks and was unable to drive, within a few months I was in a wheelchair.

I have re-married now and have a wonderful husband who looks after me. I do as much as I can when I can although life is tough when the M.E. goes on a downward spiral. Sometimes I have to spend days in bed. I live with constant pain and sickness and feel like I have a fairground in my head! I can not travel very far as it causes me to get an upset stomach and I get sick with the motion of the car.

However, I am thankful for the days that all this can be held back with a lot of pills and I am able to spend a blissful few hours shopping with my husband like normal people. I only have a 10 mile radius before I get out of my comfort zone but it’s better than nothing. I still feel isolated, trapped, useless and misunderstood. I have to fight for everything and it’s been a long, hard struggle the last 15 years. I would like to see better understanding of M.E. and I would dearly love to truly understand the cause of it.