A personal experience from Johanna Tesson
When I first became ill in 2005 I had no idea what lay ahead. It felt like glandular fever, which I’d had years before. “You can’t get glandular fever twice,” said the first GP I saw, eyeing me uncertainly. “Maybe you’re depressed.” The old knee-jerk Prozac School of Medicine. Funny thing was, I’d never been happier. Also, my glands were up, my joints hurt, I’d acquired some mysterious chronic diarrhoea, and it felt like someone had snuck up on me and unplugged my batteries. Tired wasn’t the word. Something was wrong. The next GP said to try exercise. They were ignoring me. I stopped going to the doctor.
Eighteen months, one job and three relapses later, I braved a new GP surgery. The doctor diagnosed Post Viral/Chronic Fatigue Syndrome. There was no test, no treatment, no cure. This wasn’t good enough. I decided to find my own way.
Afraid of losing my job, the first two years I continued working, “booming and busting”, until eventually “busting” for good. Having e-mailed the office “I’m very sick now. No idea when I’ll be better,” I was then faced with the gaping hole of financial uncertainty. It was hard to know where to turn – this illness wasn’t recognised or understood. Every day I made a list of achievable tasks to help me feel in control. Over Christmas 2005 I took home 6 benefits forms to fill in under the Christmas tree.
The next six months I was petrified to answer the phone. The next call or letter could pull the plug on everything. What would happen next? No one seemed to know. I became a slipper-shod housebound recluse, ordering food online and resting in the day just so I could function and look after myself. Before this I was an energetic, highly motivated 26 year-old. This anonymous disease stole my future.
I moved to a healthier rural location, but lost all contact with friends. Out of sight, out of mind. I organised a barbeque but relapsed badly from over- exertion. I couldn’t step outside for two weeks, and had to call a bemused ex-work colleague to bring me food. She didn’t get why I looked ok but couldn’t drive to the supermarket. I never saw her again.
This all might sound like extraordinarily bad luck; you couldn’t imagine it happening to you. Neither did I. Sadly, anyone can get ME, and if that’s not bad enough, people suffer the worst damage by the health system itself. “What other physical disease definition requires a 6-month waiting period before the illness can be diagnosed?” says Dr Byron Hyde. 250,000 people in the UK are affected by this ridiculous guideline. Some have had to wait up to 10 years for a diagnosis.
The charity Action For M.E. describes CFS/ME (they term it Chronic Fatigue Syndrome/ Myalgic Encephalopathy) as:
“a chronic, fluctuating illness, affecting many parts of the body, such as the nervous and immune systems. It can affect men, women and children of all ages and from all social and ethnic groups.”
Due to a lack of funding for biomedical research into the illness, there is still no diagnostic test. A test would enable GPs to diagnose and support patients properly. With prompt diagnosis, full recovery is possible. Sufferers are currently denied essential welfare benefits because their illness doesn’t ‘tick the right boxes.’ ME is an invisible illness.
On my own quest for treatment, I found the wonderful Dr Sarah Myhill in Wales. Her CFS self-help book is available at www.drmyhill.co.uk
My current GP (contact below) is highly supportive, which is crucial. After four years, I have found (private) medical treatments that work, and am making real progress.
Therapies that have helped me include homeopathy, magnesium infusions, Perrin Technique osteopathy, infra-redd saunas, D-Ribose, strict energy pacing, gentle yoga, daily guided-relaxation, qigong, and careful nutrition. I also have cut down on TV, and drink plenty of filtered water. Most importantly, I haven’t given up.
If you think you have ME, don’t feel alone. Many go through similar experiences. Find your local ME group. The NHS CFS/ME Clinic at Frenchay Hospital offers advice on energy pacing. Call 0117 918 6795 and ask for a ‘GP referral diagnostic check-list’. Don’t rule out Social Services – give them a call if you’re struggling at home. Having an interest and keeping mentally active is important. I have my violin – music is wonderful.
Little known facts about ME:
• It’s not just tiredness
• People with ME often “look well”
• Symptoms might be more cognitive than physical for some, ie rule out cinema but not a brisk walk - but vice versa for others
• Multiple-chemical-sensitivity - eg inhaling wet paint could cause a relapse lasting weeks
• Someone with ME may be doing something “normal” (like being at work!), but they saved up energy to do it, and will suffer afterwards
• Weakened immune system makes catching colds a nightmare
An estimated 50,000 people will develop ME within the next two years. If this isn’t an emergency, what is? Experts believe it is on the rise. With increasing workplaces stress, and environmental pollutants, one can only imagine the effect on the incidence of environmental illnesses like ME.
Dr Ian Gibson concluded his House of Commons report into the UK status of CFS/ME (as he terms it) saying, “It can no longer be left in a state of flux… It is an illness whose time has certainly come.”
Please print out & send this letter to your MP: www.meassociation.org.uk/content/view/370/70/
(Tried and tested by me!)
Action for ME
General: 0845 1232380, Welfare Rights: 01749 330136, Support Line: 0845 1232314 www.afme.org.uk
ME Association 01280 818968 www.meassociation.org.uk
Bristol ME Group 0117 965 6285
ME Information Portal www.me-portal.co.uk
Gosia Gray, Registered Homeopath Bristol 0117 974 5084
Bristol NHS Homeopathic Hospital – ask your GP for a referral
The Perrin Technique www.theperrinclinic.com
“Beat Fatigue with Yoga” DVD/Book: www.fionaagombar.co.uk/#
Yoga Relaxation CD http://tiny.cc/iwHV9
By Johanna Tesson, Dec 2009
This article is the writer's personal experience, and any recommendations are hers. The Spark is not endorsing any particular treatment or practitioner.Make a comment here