Living a full life: ME Awareness Week

By Sonja Lawson
FOR 20,000 Myalgic Encephalomyelitis (ME) sufferers nationwide, getting recognition from health professionals, governments departments and the general public that the condition is a very real and debilitating autoimmune disorder has been an excruciating journey.
However, the Associated New Zealand Myalgic Encephalopathy Society (ANZMES) has achieved just that and 2010 marks the 30th anniversary of its incorporation as a society. Being a member of this national organisation or a local support group is vital, not just for sufferers, but also caregivers too.
International ME Day is May 12, and this date was chosen as Florence Nightingale suffered from ME/CFS (Chronic Fatigue Syndrome) later on in her life. International ME Week 2010 has been designated May 11-17.
The most important issue that ME sufferers like myself have to deal with every single day is the discrimination and harassment from health professionals, the general public and government departments. It is a daily struggle to educate people that ME is a physical autoimmune disorder and to be treated accordingly.
Sufferers like myself are 'invisibly' disabled, as we look okay and blood tests are generally good too. Yet, the excruciating painful fatigue does not match the exterior picture.
As a sufferer of ME/CFS since February 1996, I am well aware of its devastating effects. To go from being a perfectly healthy individual in full-time employment, as well as an active sportsperson, teaching kids and training horses to virtually not being able to do anything came as a gut-wrenching blow.
Only sufferers have a true understanding of what it is like to be afflicted with this most disabling of conditions; but, as an example, imagine you have a hangover, the flu and severe arthritis all at the same time as trying to run a marathon – 24 hours a day.
ME/CFS sufferers have to put up with many other symptoms including ongoing flu-like fatigue, no temperature control, slow recovery from exercise, muscle aches, sore throats and swollen glands. Additional health issues also arise, such as fibromyaligia, Irritable Bowel Syndrome, and multiple chemical sensitivity. The cause of ME is generally virus-related, and environmental factors such as chemical exposure, surgery or physical trauma such as accidents.
Having ME can mean that people label you with names such as 'nutter,' 'criminal,' 'retard' and 'intellectually handicapped.' There is no mental, psychological or psychiatric component to ME/CFS whatsoever.
Many ME sufferers are extremely intelligent, down-to-earth high achievers, who are very active and have a zest for life, with no health issues. Because sufferers often have adverse or opposite reactions to drugs, drug-free treatments and organic items are the best way to relieve symptoms.
Treatment is still largely trial and error, but there are a number of things you can do to help the situation.
In my experience, I have found quite a number of products and activities really useful including salting food regularly, utilising chemical free and organic products, taking mineral supplements, supervised exercise at the gym or swimming pool, alternative treatments and removing as much stress from your daily routine as possible,
The most important thing to remember is it is not in your head! A lifesaver for me and many other sufferers is to keep up with interests and hobbies. You may not be able to undertake activities you have done for years, but there are opportunities to try something new and less physically demanding, such as writing, photography or scrapbooking.
Not only do sufferers need support, but people that help us also need the same level of support. They get put through the wringer too.
I want to thank all the people that have helped me, but a special mention needs to go to the Bishops, the Kilsbys and the Turners. Without their support and continuing help, I would not be alive today.
And, of course, my animals for giving me focus away from the great life I had before ME.