A while ago I had a meeting with peers. This felt very good. I also joined a peers group on Facebook.
Because I have no permanent damage from my cerebral hemorrhage it feels like I am not a peer anymore. I almost felt guilty about this. But I feel at home among those peers. Continue reading


The Sequel

The operation.

I hope I don’t scare you, but this is how I looked on the 30th of November 2013.


Two days after the operation, not so long ago.

If you can imagine now that they made a access hole in my skull at the top under the lock of hair at the front, and the artery they had to put a clip on is at the back of my skull, right below my brain. Than you have some idea about what they had to push aside to get to the artery.

There where the hole was made, we have some kind of “gap” in de brain, at that point the surgeon could go in between the brain, to access the artery at the back of the brain.
So he literally had to push aside my brain to get there. The surgeon called it “manipulate the brain”.

There is no room to push aside the brain, so he basically had to dent my brain to get access.

So as a result my brain is bruised now. You can’t see anything on the outside, but on the inside it takes 1,5 year to recover.

And this is what is giving me all my problems.

The first week I didn’t have much problems, I came through the operation pretty easy and without a lot of pain.
When I came home the complaints started.

Tiredness, I know this sounds like an “easy” complaint, I mean that people think very easily that you don’t want to do something or asking for pity.
People think, “make a few good nights, and then it is gone” or “ just go on, you will build energy”
And under normal circumstances I would share these thoughts.

But in this case; physically I was already tired from recovering from the cerebral hemorrhage, but I think I have that under control for the most part.

But brain recovery is a different thing to deal with. This recovery sucks all my energy away.
I feel it starting in my head.
I get tired in my head then, than my head starts itching, always in the area of the scar but also at other spots on my head, than my eyes start acting up not focussing corectly, than my arms, and then the rest of my body.
If I take a nap for an hour I am doing ok again for a while, and then it all starts over again.

Everything is working overtime.
You need your brain with everything you do, that tires me, and recovering also tires me, and all comes in more than normal because my “filters” don’t work. So the brain get even more work tob e done, which tires them even more. So basically I am working in a circle.

Time is the only medicine with this.

Right after I came home from the surgery, my anger started, this anger lasted for certainly 3 months. Behavioral changes are at the front of the brain, right in front of where the hatch was made.
I think this is the part that heals first, these filters work again, and my behavior is also normal again.

Type or say words in the wrong order, or not remembering certain words at all, this function is around the “fold” in the brain.
This also is almost normal again, only when my ear hurts again, I sometimes have a hard time finding the words.

The complaints I still have now, are all at the back of my brain.
The function “observations” is at the back, so hearing, smelling, feeling and so on.
Those filters are not recovered yet, everything arrives hard, and it is an area which you use all day, so this recovery goes slow probably.

So the circle I am in now is as follows.
Because of using that part of my brain I get tired, all comes in without filtering, so that’s even more tiring, the recovery of my brain tires me, because of being tired I become dizzy, but sight is also in that area at the back, so it becomes more charged, so I become more tired, and so on……..
I hope everyone still understands.

So the only thing that helps right now is rest and time.
The rehabilitation centre can’t do much about this either.

What I Think is Going on with Me All This Time

It started with a cerebral hemorrhage on the 14th of February 2013.
Because of this my body goes in to shock and my metabolism into survival mode. Everything my body can do to stay alive and recover starts working.
First my body eats my fat reserves, I didn’t have much fat to start with, so it was my muscle tissues turn next.
In those 2 weeks in the hospital, this process went very fast. I came home skinny and very weak.

The body stays in survival mode.
The body starts to save any extra nutrients that it can find. This is why I gained so much weight so fast.
I saw the fat balls appearing under my skin, painfull solid discs under my skin.
After some time the weight gain slowed, but it took at least a year until it stabilized.

Maybe the doctors were right about my pituitary being hit. But may be the thyroid hormones and growth hormones are part of this survival mode. It forces everything to make more than needed to stimulate growth in energy supply.

At the same time the cleansing process starts.

The abnormal behavior of my peeing already started in the hospital.
I didn’t pee much for days and after a few days all came out. During the days I didn’t pee much, those solid disks under my skin increased rapidly.
Maybe it is some kind of battle between survival and cleansing. Survival mode wants to store everything, cleansing wants to get rid of everything.

The strange stool is kind of the same story.

When the peeing changed to kind of normal, the excessive sweating started. Which is also a form of cleansing.

This cleansing process above is working from the inside going out. But on the inside there is also a cleansing process going on.

Contaminated cerebrospinal fluid was drained through the backbone into the muscles along the spine from the pressure of the hemorrhage.The immune system then had to dispose of it.
Because I already have connective tissue growth in my SI joint, this becomes my weak spot. Waste material doesn’t have enough space to pass out of backbone, that’s why nerves get pinched and cause terrible pain in my back.
It the beginning the pain was so terrible that I could hardly walk.
Now the waste gets less and the pain gets less.

All this is reasonably stabilizing.

Muscles are coming back, fat becomes less, peeing is almost normal and the sweating gets less.
My back is sometimes worse than others, there are even days I have no pain at all.

The body was also tired because it was so weak.
Not much muscle tissue, but gaining weight is heavy and tiring.
All these processes going on is tiring too.
And waiting that long for an operation is tiring mentally.

I can’t stop this process either, not even for a short time. The body goes on with healing, tired or not.

While this all is going on, a second process starts at the end of November because of the operation.
So all repair work is double now.
Instead of only my body working to heal everything, now the healing process of my brain starts. A healing process which is much more tiring then just my body healing.

More about this brain healing process next time.

Under Construction

What am I doing?

Trying to find a reason for how I am feeling.
Not that it will change anything, but may be when I understand what is going on in my head, I can accept how I am feeling.

I have the tendency to fall back in my biggest mistake.
I don’t want to be “sick”, so I try to not let it rule my life.
But then I fall back into the biggest mistake I can make.

Do too much, go over my limits, which results in feeling worse.

I need a reason for myself, to accept it better, I feel guilty now.
It feels like everyone is looking at me and thinks: “Go back to work, don’t feel sorry for yourself”.
But mainly it is me who can’t get “peace” with my situation.

So now I am doing “research” about the brain, how the brain works , about the operation, and the effects the operation has on my brain.
I want to add all this to my blog as a separate chapter someday.
But it all goes slowly, it makes me tired.

I am also trying to write about my sexual problems. I am not sure yet how or if I am going to share this.
I do think I can help people with talking about my experiences. There are still women/girls who have the same weird idea about sex I had.

My idea was that woman are supposed to “give” sex to a man, because men need it. I never really thought about the idea of needing it myself or liking it.
At first I thought I was the only one or last one thinking this way.
But I found out that there are still women, even young girls, who think the same way.
It is such a shame, right?

By writing about my experiences and thoughts about this and may be sharing them, I am trying to find an answer to why we think this way and how we can change ourselves so we can enjoy sex.

So…… all is under construction.

I Want to be Fit Again

It is silent inside of me. I am so terribly tired, that my day consists of doing something and sleep.

This first part I wrote yesterday, too tired to finish it, I got a headache and needed to stop writing.

Today it is all drama.
For the first time I cancelled rehabilitation.
I am so tired that I am constantly dizzy and sick and I have a headache.
If I walk up the stairs and then down again I am totally exhausted.

I do have more time for myself in the last 1,5 week. The kids are helping me with the housekeeping now. It should become nicer for me this way.

But now I can relax more, I am finding out how tired I really am.
I think I was living on adrenaline.

If I ask the doctors what it is and where it comes from, I constantly get the same answer, “You are doing too much, you need more rest, this needs time”.

May be I underestimated things a bit, like the surgeon said.
He said that I shouldn’t forget the fact that although he didn’t damage my brain, he did have to manipulate my brain to get to the artery. He literally pushed my brain to the side and it needs time to heal, 1 to 1,5 years.
The fact that I got through the operation so easy doesn’t make the operation less severe.

I don’t do much, I think, but probably still too much for the recovery of my brain.

This is so terribly hard on me, I hate this so much. I am so tired of being sick.
I don’t want this anymore, I want to be normal again.
I want to go forward, but it feels like going backwards.
I want to be fit again.


Addition to “Makes Me Insecure”

It feels as if my incoming filters are not working right.
I think the brain normally filter/regulate everything that comes in, I am not a doctor, I only say what I think and how it feels to me, and with me those filters don’t work right.

From everything that comes in, I get the full load.

Sunlight, full load, people who have migraines know what I am talking about.

New sound, full load, if I am used to it I’m ok.

If I look around me, I don’t see 1 building for example, I see all buildings, all windows, all signs, and so on.

I think with the emotions it is more because I am changing.
Instead of keeping my mouth shut, I open it and react, if I get hurt. I need to get used to this behaviour; it is a new feeling for me.
Or may be because the feeling is new, “me” doesn’t know how to filter/regulate them.

Everything feels new, while I am familiar with it.

I will ask at rehab how it works with those “filters”.