My eyesight problem is called Ocular Albinism with Nystagmus. My vision is about 10 – 15% (I don’t know how that relates to 20/something vision information.).
There’s a shortage of pigment cells which causes too much light to enter the eyes, blinding you. It also causes a shortage of the cells that convert light into current, which is transmitted to the brain forming the images that make you “see”. This shortage causes Albinos to be really white with very light eyes.
I have Ocular Albinism and that means the shortage is limited to just my eyes.

Nystagmus is an irregular uncontrollable movement of the eyes; in my case, horizontally. The brain is causing this because of the incomplete image data that it receives from the eyes. It makes it impossible to hold onto an image (to keep looking at the same thing), for more than a second.

My vision will not change. The problem I was having is over exertion and fatigue. With a little bit of effort I can see more. If I increase the effort, I can see even more and if I increase it yet again I can almost see enough to do everything I want and almost up to average. I’ve been doing this all my life without noticing it. At age 35, I was burned out because of all this effort.  At least that’s what I was told then. “It” also caused a lot of other problems with very painful symptoms.

The life I was used to leading had ended and I had to learn to deal with my handicap, giving it the consideration it deserves. I am a visually impaired person… and not just someone struggling to keep up. See, it’s working already!

From June till September 2005, I’ve been going through 18 weeks of rehabilitation to (re)learn everything I do, to be able to live my life in a way that is GOOD for me and to get back the energy to live it.

After searching for years, I’ve found out I’m also suffering from Fibromyalgia, which causes too much muscle tension in my entire body which causes a lot of pain. Pain that was first thought to be caused by my visual handicap. Fibromyalgia has a lot of symptoms. Sensitivity to light being one of them, which is also one of the symptoms of my visual handicap. That’s probably part of the reason it took so long to diagnose it.

But, some time later, when I consulted a pain specialist, I was told it’s not Fibromyalgia. It seem to be sort of logical that the other specialist came to that diagnosis, ’cause she wasn’t trained to look further, outside her field.

The pain specialist pointed out there’s a problem in my lower back, causing issues with several intervertebral discs in my neck, causing all the symptoms mentioned above.

The ‘solution’, a denervation. Heating and burning several nerves in my lower back, so that they are not able to transmit pain in order to reduce the stress in my central nervous system and to re-activate my body’s self-healing abilities.

The denervation itself was very painful. My body had a hard time dealing with it. It hurt so bad.

At the moment I’m still recovering from the burns the procedure caused. It can take up to five months before it’s know what effects the procedure has had, if there are any.

So I’m waiting and keeping myself distracted.

I’m trying to find ways to deal with the entire situation. Saying it’s not easy at all would be an understatement.