Why it Took so Long

Long I've hesitated “if” I should talk about this.

I've written and finished this post already in July last year. If I want to explain you why it took so long time before I started to learn to work with the computer and began to surf on the Web, then I must broach a subject that many of you rather don't like to read about and that's: illness.

There are more pleasant subjects to talk about, but illness is a part of my life.

What my illness is: till now – no doctor can tell it, and I consulted many.

They “assume” that I have an autoimmune disease, that my immune system is over active and that it attacks my own body. The only thing that I can do against it is to take inflammation inhibitors, but they only suppress the symptoms, they don't cure. So – I don't take them often because the side effects are sometimes very heavy. Of course I also can take painkillers, but that's bad for my stomach, therefore I take them not too often.

So I try to live with it and make the best of it.

I have many types of symptoms and I will not enumerate them all. I shall try not to go too much in detail.

The first symptoms started already at a young age, (although at that time they were very mild).

One thing is certain: I'm not alone in the family. My mother had the same problems. (When I was a young girl, my parents kept me home from school to take care for my sick mother.) My sister who's five years younger than I, is the “worst“ case in the family.

She was only 38 years old when she had to give up her work completely. She had periods that she had to sit in a wheelchair because she could no longer walk. She worked at a bank office where she had to sit for long times in the same position on her desk, and this became a very big problem for her.

For me: that's also “one” of my problems and “that's” why it took so long time before I learned to work with the computer! I've always postponed it, I've always avoided to sit still too long .

Because of this, I had to give up most of my hobby's such as: oil painting, needlework, home decoration, gardening etc.

But – I consider myself lucky – I still can run!

I even think that “running” is my salvation!

It seems as if my body needs oxygen and that's what I'm getting when I run. I have to move my body without using too much force.

The power of my muscles (especially in my arms) is deteriorated, I can't carry heavy objects. When I work, I must always work with the breaks on. When I don't listen to my body then I have to pay the bill later. Sometimes, when I have done too much (and that's already not much) it can be that at once: I can't stand on a leg or raise up an arm. It can be also that: without having problems the day before, when I wake up the next morning I can't get out my bed without help and then I can't even putt on my own cloths.

Sitting behind the computer can be very difficult for me because after a while my whole body can start to feel very painful. Then it can be that I can't keep my head upright … and I must lay down, and yes, since I've started to work with the computer I had to pay the bill many times.

It's so difficult to find the right balance between rest and work because working long and also sitting or lying still for long time isn't good for me.

Because of this my social life is really restricted, and sometimes I can't go to a restaurant or a theater. It has been, that I went to a theater but then afterwards I needed a whole week to recuperate.

Sometimes I can't even drive the car, it can be a real torture. Then I can't keep my feet on the pedals because after a while I get cramps in my legs or feet, and that makes it even dangerous to drive.

What makes my problems worse: I like working, I like doing things!

But, I have the “luck” that sometimes I have no problems for months.

Then it seems like I was never ill before.

What makes my illness “incomprehensible” is that: in 1988 (then I was 45 years old) I even had a few months that I could run almost 285 km per month! I still can't believe it and I even thought that I was wrong. For this reason I looked it up, and yes … it is true!

Now I'm almost 67 years old and if I'm not ill, I still run 6 km every other day. After I've ran I must rest and then I sleep at least an hour or so. If I can't run, then I try to walk the same distance, and then I can feel myself so much better. I started to run 29 years ago.

You must know, in earlier times I could move mountains! I was the interior decorator and the paperhanger in the family. I papered my own place and also several rooms of my parents and my son's house.

I made the curtains and the roman blinds, for several rooms of my home and also for my son's whole house. Sometimes I also made my own cloths.

During the construction of our new house in 1994, we installed the electricity and we built our garden house ourselves. I was my husband's “assistant” electrician and bricklayer, I liked working together.

But then came1998, the worst year in my life!

Already a few months before I had felt myself very bad and exhausted. Going up the stairs felt like climbing up a mountain and I could run no longer
I was hospitalized that year in January for a whole month. Doctors assumed that I had had an internal bleeding because my hemoglobin, haematocrit and also several other blood values were critical low.

I was very ill at that time, I had constant pain in my whole body. I couldn't sleep from the pain and I felt entirely exhausted.

By matter of speech: my whole body was turned inside out – they did so much research on me, but they couldn't find an internal bleeding.

What they found was that I had (and still have) deformed and enlarged red blood cells.

In fact, I was glad at that moment that they found “something”, but because they found nothing else their research went into a whole other direction!

They asked my husband if I was maybe someone who was “mutilating” herself!

Maybe I was someone who was cutting herself!

That would have been an “easy” explanation for my blood loss. If they can find nothing then it's all in the head!

It made my husband really furious.

So, after staying a whole month in the hospital I could leave without a statement for my problems. I had to take very strong iron tablets and I had to keep rest. Every three weeks I had to go back for a blood control.

It took almost half a year before I recovered and that my blood results were OK.

In the years afterwards, other doctors discovered that there was much more going wrong in my body.

I had a magnesium deficiency (or magnesium leak, that's how my doctor – an endocrinologist – calls it). Magnesium can't get into the center of the blood cells. That explained why I had (and still have) so many cramps and also felt sometimes so exhausted. Until 2 years ago I had to go frequently (at least every three weeks) to the hospital for one night to have a magnesium *intravenous infusion (drips over 12 hours). In spite of that, my magnesium level will never become optimal and I shall have to take magnesium supplements in very high doses for the rest of my life. The lack of magnesium makes that my hands and arms often tremble and that I can't concentrate myself so well. I also can't cope so well with stress.

Now my iron level is much too high and my sugar level goes much too low and recently I had a vitamin D deficiency.

One symptom is not painful but very annoying: heavy equilibrium defects. Then it feels like I am constantly sitting in a merry-go-round. Then I sometimes fall, and feel so sick that I must vomit. Then I lose all my self-confidence and then I'm afraid to go outside the house.

In fact: there is almost no organ or system in my body that had not to deal with my illness.

But I will not give up, I'll keep on fighting.

If you are still reading this, then that's very kind of you to stay here and to endure this all. It was certainly not my intention to be pitiful!

In fact – I consider myself “lucky”, because I know that there are many people who are so much worse than I am. I – I still can run!

One positive outcome of me being sick is that: if I had not been ill, then Pipke would never have lived. Why – I will tell you this later in her story.

Now I shall close the shutters of this “unpleasant” post because it was already more than enough.

I'd hope it didn't annoy you too much.

To finish I would like to give you this advice: take care for your body – listen to your body – you have “no body” in reserve! Stay healthy!

Thank you for reading my story and I wish you all a good health!

(* I don't know if I translated it correct. They administered the infusion with a catheter in the vein, I hope you understand me.)

PS: I decided to publish this post after I encountered several blogs about people who also have health problems. They are much worse than I am. They suffer from FMS/CFS or ME. One blog especially touched me very much because I recognized many things.

I – I stopped consulting all kind of doctors because there's no doctor who “knows” what's really happening. They only “assume”. So – if they can't cure me then I rather work on it myself.

I listen to my body and take no more medicines that they prescribe, it's almost poison.

They do more harm than good.

For those who suffer one of these above mentioned illnesses:

I wish you all much strength.

Also I know what it is: not being understood by doctors.

Take care and big hugs!