Sponsored by
Learning to live with challenges of chronic fatigue one day at a time
Christine Milner is one of 250,000 in the UK who suffers from chronic fatigue, or ME. Here she gives a personal insight into what her life is like.
You wake up in the morning with a pounding head, aching from head to foot.
Your arms and legs feel like lead, your brain seems stuffed with cotton wool.
You console yourself with the thought that by this time next week you'll feel better.
Except you don't. No medication makes any difference to the way you feel, and over the coming weeks and months various doctors and well-meaning friends encourage you to "just do a bit more each day", even though you have as little energy and as much pain as you did that first day.
For many people with ME this is what life is like every single day, waking up and feeling like you have a bad dose of flu, but without the hope of it all being a distant memory.
Latest figures suggest that 250,000 people are suffering from ME, and a quarter of them are ill enough to be housebound or bedridden for most of the time. After developing ME nine years ago, I soon discovered that ME patients are not treated like those with other illnesses.
Reports suggest that 20 per cent of doctors are not interested or hostile to those suffering with ME.
Despite not being able to walk more than a few metres without becoming exhausted, I was refused a wheelchair by my GP, and told that he did not issue them to ME patients as it encouraged them to give up.
The implication of his statement was, of course, that if only I tried a little harder, I'd become better. In other words, it was all in my mind. He told me I was depressed and wanted to write me a prescription for some pills: a diagnosis he never wavered from during the next five years.
Faced with a future of being housebound, I chose to buy a wheelchair for myself. I applied for a disability living allowance.
It took me nearly four weeks to fill out the 36-page form, only being able to concentrate enough to answer one or two questions at a time. I was refused the allowance, but told I could appeal against the decision if I chose. I didn't have the energy, and for over five years struggled on incapacity benefit. Only when I moved to Sheffield and found a sympathetic doctor did I finally get more financial aid.
More than once I pondered on the question, "If I had this level of disability from another medical condition, would I be treated like this?"
Despite rulings by the World Health Organisation that ME is a neurological disease, there are still many within the medical profession who are slow to change their attitudes.
I feel privileged to now live within a health authority that takes my condition seriously. I have a consultant at the Hallamshire Hospital who has conducted extensive testing to rule out other conditions which might produce similar symptoms.
There is an ME support team based at Fairlawns and a NHS Complementary Heath Clinic at Manor Top for those with long-term illness. The local ME support group has been invaluable in offering advice and contacts; hardly surprising when you consider that there are approximately 2,000 people suffering from the illness within Sheffield alone.
After nine years of learning to cope with my limitations, I take a more philosophical view of my situation.
Suggestions that trying graded exercise is the only proven method of treating my condition are usually met with a wry smile.
Most people fail to realise that this research was only carried out on those ME patients who were well enough to attend the trials in the first place. It also ignores the simple but profound truth that if it were that easy, don't you think l'd have done it already? Cognitive behavioural therapy is also proposed to many patients.
Although I'm sure that this treatment may be beneficial to some people, it again misses the point that there is an underlying physical cause to the illness. While these two approaches to the treatment of ME continue to be seen as satisfactory, the research into a cure or better management of the disease – particularly for those with the most severe form – looks a long way off. Instead I'm now left with a life-limiting condition that dominates my routine.
I have two hours of activity each day when I am up and out of bed. However, if I go beyond my limit one day it can take days to recover.
Muscle and joint pain are still a major problem, but the brain fog and headaches that plagued the earlier years are much better.
I have had the privilege of being there for all three of my children through their teenage years. On their return home from school or college, they descend with mugs of tea and piles of toast to sit on the bottom of my bed and relate their day.
We have probably had more family nights in with a DVD and take-away than others.
Has having ME made me a different mum? Yes, but it's often been one who's felt the most miserable failure as a parent, missing sports days, school plays and prize givings. But at least they have always known where to find me.
Email to a friend
Print this page- Leeds lose Ward to Palace: Is there anyone they can afford now?
- Sheffield Wednesday leaving it late to hijack Leeds United over Ward
- As Snodgrass dithers over Leeds, Warnock throws a lifeline
- Ball is in Leeds United’s court over contract - Snodgrass
- Police turning blind eye to Asian voter fraud, says MP
Looking for...
Featured advertisers
Jobs
Search for a job
Motors
Search for a car
Property
Search for a house
Weather for Yorkshire
Saturday 26 May 2012
Today
Sunny
Temperature: 8 C to 21 C
Wind Speed: 17 mph
Wind direction: East
Tomorrow
Sunny
Temperature: 9 C to 22 C
Wind Speed: 13 mph
Wind direction: East
