Another Year, Another Disease

The last 3 weeks were a little bit hard. Nearly every day, I was in a hospital, or met a doctor, or a doctor came to see me at home.

It started three months ago, when I got a small skin problem where the physician finally decided to cut the piece of skin out of the area above my stomach. So far not so bad, but unusual for me. I didn't have any experience with such things.

It turned out the physician cut out a bigger piece of skin than expected. What remained was some kind of black hole... and it did not heal for the next 8 weeks.

Finally we switched to another doctor. He said he would have to stitch and suture the open area with the skin of the nearby skin area. He did it and it went well - at first.

• Of course I was not allowed to move my body much so that the suture would not open. I am sitting in a wheel chair, and I cannot move much at all, but then it was even less, so it was not a simple time for me. It was painful because my body does not react well when I cannot move my muscles, then my muscles and nerves send hurting signals.
• I had to take many antibiotics which caused stomach-ache, and made me very tired, so I spent the Christmas time and New Year's Eve in my bed.
• And it turned out that the skin problem started again, this time around the suture, only smaller as two months ago.
• At New Year's Eve we got the result from the doctor about the name of the skin disease. It is an auto-immune disease again (as my original problem two years ago which caused my palsy). And again they don't know much about it - neither the reasons nor a possible therapy.
• I was scared if my body were going to have bigger problems, how my life would go on, and so on.
• We did some checks at a hospital, and fortunately they had met my doctor there before. They said he is quite good, and that we should trust him.

So currently I take high doses of cortisone again, and my skin has a small bad area where blood comes out when I move my body too fast.

The good thing is that the remaining bad skin area might be small enough so that it might heal some day. We will see.

An old woman in a hospital

It took me a while to find out what it was about and why she was there, but I couldn't really believe it.

She was an old woman lying in one of a few beds in an intensive care unit of a small hospital.

She seemed to be sleeping most of the time. Maybe once an hour a nurse came and put the flexible tube  through her mouth to the upper part of her lungs to take out the mucus. A procedure which hurt quite a lot, and so the old woman often groaned.

Every few hours the nurses turned her around in the bed or tried to talk to her, but she usually didn't say anything. She just laid in the bed and didn't do anything. Just sleeping. Maybe she was dreaming, maybe she had a lot of memories which made her feel good. I don't know.

I finally found out by listening to what the nurses said that she came voluntarily to the hospital twice a year, because here it was better for her than at home. Here she didn't have to do anything, and the nurses took care of everything.

Nevertheless I wondered a lot why any person would ever enter such a room like this one voluntarily. My only goal was to leave this place, and I counted every second.

When the nurses came to me with the tube to clean my lungs, I wanted to run away but I couldn't move my body at all, so I just watched some of the patients dying in this special room, some of them leaving to a different hospital, and one of them - the old woman - enjoying it. I never understood it. I just don't want to be like that when I'm old.

Collage of several of Gray's muscle pictures, by Mikael Häggström (User:Mikael Häggström) (Photo credit: Wikipedia)

Training

This week I started with my training again.

• Cardio training, several times a week, if possible (depends on my energy level, time, and the hurtings in my right shoulder).
  
• Power... muscle training with light barbells. I was never strong, but after 4 months lying in a hospital bed, I lost ALL of the muscles, I did not need to survive. Actually I couldn't even hold a cup of water, when I was in the hospital, over a year ago. Now I am training with barbells of 1 to 4 kg. It is ridiculous, but I cannot change it except by more training.
  
• Training for my hips, for my back bone. That's interesting, but very difficult, because I cannot use most of my muscles there.
  
• Finger training. The fingers of my left hand work only partially, unfortunately.
  
• Neuro training. Ha, that's funny. I have to move a special ball with my left hand in circles. The ball has some inner parts which work against that movement, so it is difficult. And at the same time I have to move my right hand independently of the left hand. Well, I am actually quite good in this. My physio therapist said he has never seen such a "talented" guy before. Nice somehow...
  
• Wheel chair training. I have to learn how to drive only on the back wheels. That is required for driving over a single stair or into the underground train.
  
• And so on. Too much to do for a guy with not enough energy. But it will become better...

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Duloxetine (Cymbalta(R)) Capsule, 20mg. 日本語: デュロキセチン(サインバルタ(R))カプセル 20mg (Photo credit: Wikipedia)

Lyrica 225mg (Photo credit: Wikipedia)

Medicaments are important for someone in my physical state. I try to take as few as possible, but still the list is long.

A good idea of mine was to go to a special doctor, a nutritionist. He gave me several things - from vitamine D (from which I don't have enough due to my nerve disease) to something which is supposed to away the poison from my liver (hm, don't know if that works).

The second group is the hard-core medical stuff to prevent my disease to come back: Imurek, and cortizone. The first one suppresses my auto immune system, the second one helps to prevent infections, but destroys my skin. Fortunately I reduced it to 2.5 mg a day, and maybe I will stop taking it in a few months.

The third group are medicaments agains my nerve hurtings. The partially hurt nerves in my arms and shoulder are hurt very, very much, and I take three medicaments against it: Lyrica, which is said to be a very good tool for that kind of pain, Cymbalta, which is actually an anti-depressivum, and then liquid Canabis. I have heard that there is a new law in USA which does not allow people to even talk about taking Canabis. Quite ridiculously. All three together help a little bit. Not enough, so that's still a problem.

Then there are a few other hard-core medicaments which help me a little bit, e. g. one for protecting my stomach.

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Work

I started to work in November 2011 - about 13 months after my bad disease.

It took more energy than I expected.

I am only on three days at the office. I started with 4 hours work per each of those 3 days, and the rest at home. Currently I spend 7 hours on every day at the office, so it is a half-tim job.

I enjoy it.

I like to meet people there, most of them are quite nice to me.

The bad part is that I lost all of my functions. And I was so long out of that business that I have to learn the business and the rules and everything else of the company I am working for.
I am some kind of geeenhorn.
Which is strange, because actually I have most experience in software development of all people there. But currently I am working on the least important piece of software there.

But I enjoy it.

I see everything from a new point of view. I see the managers and what they are doing wrong and sometimes right.
I see the developers and their frustration and sometimes motivation.
I see the customers or product owners and their hope.

If all of them really know what is important in life and business?

I love software development, I learnt a lot about it, and I spend most of my lifetime (business and leisure time) for it.

I have to find a way to show my enthusiasm at the office.
The problem is that currently those developers rule who have not enough experience and who are doing things wrong. Quite wrong.

But I enjoy it.

These are amazing times for software developers like me.


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In the time around New Year's Day I like to compare how my situation is now and has been one year ago.

End of 2010	End of 2011
I am in a hospital in Tulln (a small town in Austria) after a bad disease in Oct. 2010.	I am at home.
I cannot move my legs.	I cannot move my legs.
I cannot move my back.	I can move my back partially.
I suffer bad hurtings in my neck, shoulders, and arms.	I suffer bad hurtings in my neck, shoulders, and arms.
I am very weak.	I am not as strong as I would like to be, but strong enough for daily life and my job.
I nearly cannot sit in a wheel chair.	I can sit in a wheel chair.
I do not work.	I started to work in November.
I have no computer.	I spend too much time in Google+.
I am thinking about having a future or not.	I will have a future.

Step back and laugh - Two weeks at home

Two weeks ago I came home after 10 months in hospitals and rehabilitation centers. It is a new experience for me to live in a wheel chair now. Sometimes people ask me how I handle all this stuff. I think there at least two important capabilities you should have.

Step back

If you have bad emotions, then you don’t have them, but you feel them, your are the bad feelings, your whole world is tumbling down, and you can only notice what is bad. OK, hopefully it’s not that bad with you

I wonder how other people would describe someone who is in just a bad mood. Maybe they would talk about the face of that person, or about her body language, or the whole situation like from a bird’s view point flying above in quite a distance.

That’s actually one of the key techniques: to get some distance from one’s own situation and one owns emotions. If you make some distance you get a better overview. And if you don’t feel yourself in the bad situation, you feel your bad or sad emotions less strongly, so you can start feeling better, maybe a little bit better or perhaps – who knows – much better.

Laugh

Now there comes the easy part: smile or laugh about something in your not so good situation. Maybe it doesn’t seem easy at the first moment, but as you got enough distance, you should be able to find something which is a little bit amusing, or maybe ironic, or maybe funny. A second of a smile might be enough to bring you in a better emotional state.

Of course these ways of behavior need some practice. But if you can apply them, they can be extremely powerful.

My time

When I came home, I had to get used to all my things at home and how to live now, but that was much easier than I expected. Well, we don’t talk about things like going to toilette or taking a shower, but most things are easy to handle.

More exciting were my trips to the town. Close to our apartment there is a good area for wheel chairs so I started my cardio training there. It was difficult. My body was not very fit, so I could not go far by wheel chair, I often had to make breaks.

Then we went to the first district, which was very interesting for me. It distracted me from all my other problems to see all the people there, it was quite crowded with tourists and rich shoppers. It seems to be more helpful for me to use such areas for cardio training than a simple way in a park or where ever.

I was wondering how people would behave to me, but all of them made room for me, which was quite nice, so I must say, it was easy to move in a crowd. I was a little bit scared in the beginning, so I watched myself virtually from above, watched me how I moved around the people, and it helped me quite well.

There is one very difficult thing for me: to drive over stairs or or borders of sidewalks. If I want to cross a street, I have to drive over two borders, so if the borders are small, I usually can handle this now, but not every time. If the borders are too big, I need help. The same with the underground train: is really difficult and sometimes dangerous to cross the gap between the train and the sidewalk. They did not take care of that here in Vienna, so it is quite bad for people in wheel chairs.

The best thing was that I could eat some Italian ice-cream in the first district again. That was good…

Currently I spend my time with doing a lot of organizational things, going to doctors, doing physical training, training with the wheel chair, and finally thinking and handling all the emotional stuff that happened in the last months. Much to do. Better to get some distance and have a good overview. And smile a little bit about all those crazy things.
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