The story about the end of my (active) life

WARNING:
I wrote this while I'm under the influence of very heavy medication, English isn't my first language, I hope that the English is sufficient enough that you can read and understand this. In the text I tell about some herrific things. If you can't handle this, don't read it!

 

 

The story about the end of my (active) life

In 2000, Bianca (my wife) and I cozy on vacation in Lanzarote (Canary Islands). The first week we've seen a lot of the island and had much fun.
At the end of the first week I felt a bump on my rear, was feeling nauseous, had diarea and got high fever. Because I didn't trusted the situation we immediately asked for a doctor in the hotel. This so called learned person came with the 'excellent' diagnosis "inflamed gluteal muscle". So he subscribed anti-inflammatory drugs and painkillers. This, of course beause of the wrong diagnosis, did nothing at all.

After a few days the bump 10 x as large, back to the doctor, again the same diagnosis. ANWB emergency (emergency service of the travel insurance) call, they could not do anything (or wanted to do nothing). So we could not fly back earlier. Worse still, according to the ANWB it wasn't allowed for me to fly back, on the scheduled date, because of the fever.
Lanzarote 800

So cluttered with fever inhibitors to the doctor for an airline statement, he gave me a huge injection with several painkillers and so we finally could fly back to the Netherlands. The whole flight sitting on the huge abscess (which it turned out to be). The abcess was as big as an American football.
Now a juicy part: on the plane the abscess bursted and the pus flowed out, delicious a smell of rotten flesh filled the airplane. I felt even worse and very guilty to the other passengers. The passengers were fantastic and they all said not to worrie and wished me the best. The stewards had explained what was happening with me in the front of the plane. I was in a daze and only a few parts came through in my head.

Arrived at Schiphol airport in The Netherlands, there was someone from the Schiphol staff ready with a wheelchair, and luckily the taxi driver was already waiting to drive me to the hospital. We knew I was sick but having the situation considerably underestimated we went by taxi to the hospital in Zoetermeer were we lived.

After we arrived at the hospital in Zoetermeer we had to wait a very long time on the doctor to review my situation. This was the first time I saw a doctor to become white in his face. He rushed to the phone to call the LUMC (Leidsh University Medical Centre) in Leiden. They stabilized me and we left in an ambulance with all the bells and whistles to Leiden. I can remember almost nothing from this ride. The only thing I remember is that I didn't fit on the stretcher and in the ambulance because of my huge muscles and my length of 6,5 feet (199 cm).

When I arrived in the hospital in Leiden I was immediately provided with all kinds of tubes and wires and I was under anesthesia. It looked like an episode of E.R. Within no time I had my first operations. Diagnosis: fistula in my rectum what caused an infection and a huge abscess.
Because the abscess had become so large and also bursted open in my body, a large part of the tissue in my lower abdomen was polluted and much tissue was necrotic.

When I awoke I was already about 5 days, under resuscitation with a stoma on my stomach, and with many tubes in and out of my body, in a bed in the intensive care unit. The doctors had to cut me open from my tailbone up to my sternum, one big and very deep wound. They had to do this to clean everything and to check to what extend my body was infected and necrotic. I was told that in the first days the doctors didn't think I would survive everything. A few times I was on the edge, and almost died.
lumcAfter about 15 days in the ICU, the assisted breathing was slowly stopped (a great experience ... not) and I was transferred to a normal room.

Now I'm going a bit faster through time, because to descibe all the months of healing and the many recovery operations isn't that interesting, even a bit boring. It was to me anyway.

It took more than a year to close all the wounds and it took about 15 operations. The stoma was also gone and everything worked as it should be.
At this time the first pain slowly developed in my groin.

But then.....

Within a week after closing the stoma the first infection developed. Again with an abcess, but now the abcess was operated on within two days. And even when this wasn't enough, it happened three times more. There was a defect in my colon. That is why bacteria could cause infections. It was a very, very small defect and it took up to half a year to find it, and another three months to repair it. After this operation I was finally infection free.


Over time (we are now around 2003) I was already getting a bit back to my old self. From the first month I came home from the hospital I took it up to myself to get back in shape. Normally this is coordinated by the specialists in the hospital, but (with my bad luck) they forgot the rehabilitation. Even when I asked they told me to do it myself. So I did. (a few years later they apologised for this blunder)

Luckely I have great discipline and was very motivated to get my musceled physicque back. I started by walking very short distances, first in my apartment, later outside. When my physical condition improved I asked the doctor if it was ok to go to the gym for light workouts. At this time I still had my stoma.

And now the pain growes
Of course I had a lot of pain from the beginning in Lanzarote and during my stay in the hospital. I found it very strange that my body was healing, my physical condition was improving but the pain in my lower body was increasing. It started in 2001 in my groin area, but the area was growing bigger.
pijnAfter a while walking and sitting resulted in much pain. To battle the pain I consulted, since 2002, a painspecialist in the so called "pijnpoli", there I already started with the heavy painkillers. The pain in my groin was also treated with trigger point injections, after some 10 injections the pain was almost gone... only after about 6 months, the pain was back, but now on two area's in my groin.The pain area was yet bigger again.

Meanwhile it was possible for me to start at my job again. My boss was a great help to me. He did everyting possible for me that I could resume my work. It was a great feeling.

In the meantime I was working out with very much motivation. I got a part of my old body back and was taining in the gym with the "big boys" weights. My life was slowly coming back as it was before the Lanzarote vacation.

But then very slowly the pain increased more and more, ultimately diagnosed as severe neuropathic pain (nerve pain) in the right side of my lower abdomen, my right groin, the pubic area down to my tailbone.
Working out was getting more painful and after a while it was so bad that I was forced to stop working out. This was very difficult to me because it was an important part of my life.

I was becoming less mobile. Because of the pain I had trouble walking, standing, bending and sitting. Sitting in a moving car was torture to me. During the last drive I fainted from the pain. After a while it was also impossible for me to work full time.
Luckely I had help from several people. I got a wheelchair, a three wheeled scooter and a special office chair, each with special seats. This made it possible for me to sit short times.

There were a lot of people who were very negative to me even said I exaggerated the pain. Part of this was my own fault. I'm someone who doesn't show any pain. No one could look at me and saw anything about the tremendous pain. Only when I fainted from the pain, people saw something. Only persons that saw me on a daily bases (like my wife) could see when the pain peeked. I'm not a pathetic patient who leans on others and moans all day. I allways tried to be independent and swallowed the pain, until the pain was so bad that my body shut down and I fainted.

The pain specialist tried all kinds of treatments and medications to help me. Unfortunately with no good result. After some time I had to take heavy painkillers but those only took the edge of the pain of. Have tried without the meds but that is really impossible, absolutely.
dasselaarMy regular pain specialist referred me to a collegue of him in the Erasmus hospital in Rotterdam. There they implanted a neurostimulator in my body. This is the same machine as a pacemaker in hartpatients. It sends electrical signals in my nervous system to block out the pain. In first the machine took away a small part of the pain. After a while it did nothing anymore. Again a fail. This was the last thing the pain specialists could try. They couldn't help me anymore. The only thing I can do is take several of the heaviest painkillers that they can subscribe. The side effects are terrible. It is almost impossible for me to stay awake, but I can't sleep because of the pain. When I walk to the toilet I really have to be cautious because sometimes I just fall. I can't concentrate, can't read books and when I try to play a game on my Xbox I get motion sickness.

Because of the pain I had to stop with about all my activities:
- I can't work anymore;
- can't drive a car anymore;
- working out or any sports are impossible;
- going on vacation is out of the question;
- tracking or walking is taboo;
- swimming is impossible;
- gaming, eeuh with a vomitbag on my lap;
- shooting at the gunrange to painfull;
- even intimacy or just cuddling, are you kidding, of course not;
- etcetera
I was more limited than someone with paraplegics.

What can I do?
- lying in a hospitalbed in the livingroom;
- watch television (no films, because of the meds can't concentrate or follow the story);
- use a laptop while lying on my bed;
- lying in our bed in the bedroom;
- trying to sleep (if I sleep for two hours its a wonder, but is very painfull)

You can understand that my life is not very fun anymore. And not only for me but also for my dear wife.
Luckely we have several pets who support me and keep me company during the day. Our five tame parrots and two cats are good friends. They feel it when I have a lot of pain.

DSC05603The pain never stops. Every day the pain is worse in some area's. I try to keep up some activities in the house, this is a way for me to measure the progress of pain. The last years the pain and the painarea is only increasing. The medical world can do nothing about this. Everyting possible is tried. Sometimes the pain is so severe that I lay in a fetal position in my bed, just hoping that it stops. When this happens we can't call anyone because everything that helps I allready have. After such an episode I'm exhausted and need several days to recover.
neurostimu2
I know in the future there comes a time that I can't live with the severe pain anymore, we allready talked about it together (with my wife) and with the medical help. I hope that I still have a few years, but I know that this time will come. It's like having a terminal disease.

Almost every morning, when I have the luck to sleep a short time, I wake up with pain in my jaw from biting my teeth together. Sometimes I feel like I just had a workout at the gym because in my sleep I tens up my muscles from the pain. When I am awake I try to avoid this because it wears you out and it doesn't help, it sometimes even make it worse.

The very worst thing about all this is that not only I don't have a life but also my wife is very limited in doing stuff. I'm glad that she decided to have life on her own sometimes. To go on vacation with family or friends and do some activities by herself. I feel very guilty about beiing an obstacle in her life. (when she reads this I know she gets angry)

Action figures
Because I was becoming more and more bored I started buying action figures. I want to try to build diorama's for these figures and 

acba

make pictures of them. The main problem with this is that I can only spend no more then two times half a hour a week on this. But because the pain is very bad the last months, it is impossible to do anything. But I refuse to give up. Even if I have to wait, I will build something. I started with a diorama of the band Metallica. I bought a second hand set on Ebay. I allreay repared all the items that came with the kit. But now I want to build the complete stage from the concert that the set is from. 

I keep trying, it will take a lot of time, but I refuse to give up.
When I'm chained to bed again I visit several social media and Youtube to learn as much I can about action figures and diorama's.
A few years ago I allready made a few diorama's in an other scale.
I'm glad that I started with action figures, now I have something to look for. And I am getting to know new people who are very enthousiastic about this hobby. Even when I can't be building I can enioy the figures.

 

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Why write this misery down?
Several people on Facebook, Instagram and Youtube asked me about my story. The story was allready on our website because I didn't want to tell the whole story time after time. Many people I meet want to know what has happened. I don't want to make a secret about it because people can learn about several things. I now have translated a part of my dramatic story in English for everyone who is interested.
Please everone, when you have read this, don't feel sorry for me. This doesn't help anybody. Support and kind words are always welcome.
If someone wants to publicy this text (I can not imagine why) please contact me. Ican be found on facebook (Wico Haverhals) and on our website wicoenbianca.nl.
Oh and haters aren't welcome: fuck off, go bother your mom.