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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’

Nicola Cousins

M.E. image getty 300x225 Life with Chronic Fatigue Syndrome (M.E.) I feel like I’m crawling through the dark with an elephant on my back

(GETTY IMAGES)

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 for 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.

For more information visit www.actionforme.org.uk

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  • friend

    I tried homeopathy for two years. I got so ill my family begged me to stop and I improved a little when I did. I felt a bit of a fool as it was expensive. I have read later that homeopathy is good at the beginning of an illness as it stimulates the body’s response to heal itself – when the body is in poor condition over many years it’s just not strong enough and just adds to the problem. Don’t know how true this is, but it matches my direct experience. It was very expensive too.

    I found acupuncture much more effective with noticable differences and osteopathic treatment similar to the Perrin also helped me a lot along with Smile Qigong (on dvd – when I’m able), low GI diet (lots of veggies with a bit of protein, nuts, seeds and pulses, oats and cutting out all sugar and processed white foods (white bread/pasta/starchy food) no tea/coffee/alchohol or additives and taking extra vitamins in moderation (esp magnesium – most people with ME are magnesium deficient apparently) and strict pacing really helps with a bit of NLP thrown in for good measure (I like to cover all angles and be tip top in every way that may provide ways for my body to heal and this illness is stressful, so it helps me to stay reasonably positive and focussed no matter how ill I feel). I use mindfulness meditation (Jon Kabat Zinn style) for coping with pain and fuzz. The Buddhists seem to understand suffering! I also seem to do well after anti-biotics (I get many infections despite my healthy diet) as long as I keep up probiotics (I was diagnosed with c-dif a while back and the anti-biotics worked a treat, but it seems to wear off – sure there is a link with stomach viruses/bugs and immunity). I often have measurable High white blood count and low BP.

    None of these therapies are cures, of course, but finding ways to support the natural healing processes of the body until they do find a cure seems to be the only logical thing we can do to help ourselves in the meantime. Sadly I’ve run out of savings, so I can no longer afford these treatments. NHS CBT & GET caused the worst and longest relapse I’ve ever had, so unless I win the lotto, I’m stuffed. :( At least I live with my pensioner parents who insist I wont be homeless or starve. They are amazing and the two few people who really know how this illness affects me. I know others aren’t so lucky. :( I wish us all well on our journeys and hopefully this illness will get the recognition and biomedical research it deserves so we can heal and get on with our lives! I just want to be well enough to get my job back and contribute as I was for many years before I got sick. Is that not too much to ask?


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