May 12th. Chronic Illness Awareness Day.

Her story struck a chord with me, since I have been diagnosed with M.E. as well, about 20 years ago.

It is still not recognized or accepted as a diagnosis by most people though, which is tough and stressful in itself.

My days of educating and convincing people are far behind me. It’s a waste of time. Healthy people have a hard time relating to sick people, especially if there is no visible evidence that they are ill. These kind of illnesses come across as weaknesses, character flaws and attention-seeking. Instead of sympathy, it tends to evoke annoyance.

So normally I don’t talk about it a lot, but today I make an exception, because of Chronic Illness Awareness Day.

What is M.E./CFS?

What are the symptoms?

I have most if not all of the above symptoms.

The good news is, that the severity of my symptoms is ‘mild’ enough -without a job that is- to allow a limited but acceptable life. I have met people with ME that were way worse of, being homebound, bed bound or in a wheelchair.

How and when did I get ME?

Good question, I guess, but in fact I felt this way my whole life.

Even as a child I was a weak child that was always tired and often ill. Usually I experience the feeling of being energetic and healthy for some hours in a row, at most for one or two days. After that I feel tired, lousy and need time to recuperate. If I try to keep going I will get sick.

Sometimes I feel as if I have a faulty battery. It takes forever to get charged. And when it is full, it runs empty so so fast, after which it takes again forever to get charged, and so on. Giving me short spurts of ‘usable’ time here and there, enveloped by big, long lapses of necessary ‘zombie’ time.

When you tell people you are exhausted, they tend to ask why. What did you do to get so exhausted… A normal enough question, but strange for me. Especially coming from friends and family. You would think that by now, they know that there usually is no reason for that in my case. It’s more or less a permanent state for me.

Stress and sports worsen my condition.

The last ten years I am coping quite well with the situation and that’s due to the fact that after a major burn-out, I dropped out of the working life.
It turned out as a blessing in disguise.

Why?

Well, it means that there is much less pressure on me and that I have enough opportunity for ‘down-time’. I do not have to report sick, I do not have to cancel appointments or let people down, I am just being home tired, quietly. Without a job I have a lot of control over my agenda and activities, with better chances to keep a certain balance and not get sick.

A full day for me.

This has not always been the case.

When I left the parental home and went into the big world with studies, jobs and adult worries, I tipped over the edge. From feeling tired all the time, I went to being sick all the time.

I would get a cold or a flu, followed by angina, followed by kidney-infection, and so on.

Between the age of 20 and 30 I was laying in bed ill about 100 days per year, of which (yearly) 25 would be with fevers. I was prescribed 4 series of antibiotics per year, meaning 40 series in 10 years. Not really a good thing, of course.
After those 10 years, I decided that from then on, I would try to avoid taking antibiotics if I could. In order to do that, I had to try harder not to get sick all the time, meaning that I needed to accept leading a ‘smaller’ life.

I succeeded to a certain extent, but still was exhausted most of the time, so I kept searching for a diagnosis and treatment.

I saw every possible doctor and healer out there; regular and alternative. Spent a fortune on meds, supplements, treatments and the whole shabam.

From acupuncture to chinese medicine…

Everyone - friends, family, colleagues- gave unsolicited advice all the time:

• why don’t you stop eating meat?
• eat more meat, please, it will make you stronger!
• take more rest. Apparently you need it.
• fight it, do more sports, it gets worse when you give in
• you should go in therapy.
• maybe you have food allergies
• bla bla bla

At one point I could not take it any more and decided that the best way to get rid of all these advices (that often were criticisms in disguise as in: it is your own fault that you are in this place) was to never bring it up again. Just sort of ignore and deny the whole health thing.