How to Cope With Chronic Fatigue Syndrome – myalgic encephalomyelitis

Maija Haavisto is a medical writer who lives with chronic fatigue syndrome (myalgic encephalomyelitis). Here’s how she copes with CFS/ME, plus her tips for living with this chronic illness.

“You really need to do your research,” says Maija. “If you don’t, chances are 95% you won’t get proper treatment, no matter what prestigious medical centers you may go to. That’s sadly how it works. For example, most people with autoimmune disease haven’t even heard about low dose naltrexone, even though it is by far the most effective treatment for all autoimmune diseases, especially multiple sclerosis and irritable bowel disorder.”

No matter what chronic illness you have, you need to be your own health advocate. You need to do your research, ask your doctors and other specialists questions, and connect with people who are living with the same illness. Strength in numbers! But remember that most illnesses affect people differently, so an effective treatment for one person my not work for another.

Many people who have chronic fatigue syndrome/myalgic encephalomyelitis are surprised to hear there are dozens of treatment options. Maija’s book Reviving The Broken Marionette: Treatments For CFS, ME, and Fibromyalgia lists over 250 medications alone, and that doesn’t include supplements or diets!

Some people believe there is nothing that can be done for chronic fatigue syndrome, and that’s very sad because they’re incorrect.

Chronic Fatigue Syndrome – Maija’s Tips for Coping With CFS/ME

I was diagnosed with chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) in late 2005, though I got sick on the 28th of August 2000and figured out what I had in early 2002. I was initially only mildly sick, but my condition got progressive worse until I was barely able to walk and even the smallest activity rendered me bedridden. In March 2007 I started low dose naltrexone, which halted progression and restored a lot of my previous functionality. I also take many other medications and supplements.

CFS/ME often takes years or decades to get diagnosed despite being one of the most common chronic illnesses.

Complications Resulting From CFS/ME

Sadly I have several complications from chronic fatigue syndrome/myalgic encephalomyelitis, such as hypopituitarism and myocarditis, which cause constant problems and will probably end up killing me. And unfortunately at the end of last year I suffered a severe setback in my hypopituitarism.

Acute stress is life-threatening for me, and also causes seemingly permanent damage.

By the time I was diagnosed I already knew a lot about chronic fatigue syndrome/myalgic encephalomyelitis. What I didn’t know is that things wouldn’t get better in Finland for a long time – I’ve been waiting for them to get better for ten years now and done everything in my power to aid that improvement, but still no success. I’m very happy I managed to escape the medieval “healthcare” system in Finland by moving to the Netherlands in 2010.

Tips for Living With Chronic Fatigue Syndrome

For almost all health conditions there are several or even dozens of treatments that your doctor likely doesn’t know about, but that could make your life a lot better. Had I trusted doctors’ advice I’d be dead or in a nursing home now. Many people die from taking immunosuppressants, which only make autoimmune diseases worse in the long run.

A positive attitude won’t be make you better, but you need hope to be able to cope with chronic fatigue syndrome. A positive attitude is essential so that you keep looking for better treatment.

Advice for Friends and Family Members

I haven’t got very much support from friends and family since getting sick. No one has ever taken care of me, I’ve always been the one to take care of both myself and others. Then again, many people get a lot of support from people close to them. I just wish we all could.

No one gets sick because they want to and certainly not to make others’ lives more difficult, as many people seem to think! If you feel like people are making your life complicated by being sick with something like chronic fatigue syndrome/myalgic encephalomyelitis, think how much worse it is for them.

Living in Harmony With Chronic Fatigue Syndrome…or Fighting It?

Both! You need to accept your illness, but you likely also need to actively fight to get better treatment. You need to accept you may not get your previous life back, but no matter what doctors tell you, many people with chronic illnesses can get up to 70-90% better and halt their illness progression.

Even if you can’t go back to your previous life, you can still likely have a great, fulfilling life. Losing your health is a grieving process and reaching the state of acceptance can take many years. It is of course much harder to come to terms with serious symptoms of chronic illness, such as being bedridden and tube-fed and unable to even tolerate visitors, versus just being moderately ill.

The Surprising Thing About CFS/ME

Chronic fatigue syndrome/myalgic encephalomyelitis is debilitating, dangerous and deadly. Many people don’t know that CFS/ME is an infectious disease, and that many epidemics have been documented.

The variety of symptoms of chronic fatigue syndrome is also puzzling: immune, cardiac, muscular, neurological, genitourinary and gastrointestinal symptoms and damage to just about all organ systems are possible.

Many people are also shocked to find that, for example, in Finland it’s impossible to get on disability for CFS/ME, even if you’re completely bedridden and unable to care for yourself.

How CFS Changed Maija’s Life

Maija Haavisto, Medical Writer

Chronic fatigue syndrome got me even more interested in medicine and helping other people. I ended up becoming a medical writer. I’ve now had several medical textbooks published and I’ve been a speaker at two medical conferences.

I’ve written a novel trilogy about chronic illness, first part of which was published inFinland last year and the second part will be published in 2012. I also write articles and two blogs in Finnish and do medical translation.

I guess you could say I’ve turned lemons into lemonade!

How are you coping with chronic fatigue syndrome/myalgic encephalomyelitis? Comments welcome below.

For more tips on coping with CFS/ME, read Too Tired to Work? How to Survive Chronic Fatigue Syndrome.

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