Neuro Behçets

I have spent so long fighting to get a diagnosis and now that I have one the feeling is a different one to that expected.

I resent it. I don’t wonder why me or feel sorry for myself for the pain, for the awkwardness but I resent it. I resent the feeling of being ill, I resent that I cannot help my little family and still have bounds of energy left, I resent something that is nothing. It doesn’t exist, I can’t fight it, I can’t change it,  the only thing I can do is continue to adapt and to adjust to the effects.
But here is the thing. For a condition so rare – where is the information?

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Behçets

Now there’s a word. I had never heard of it before – not aware of anyone else with it. But here I am.
It causes me so many problems, from ulcers, difficulty walking, severe pain that I have started to get used to.
The biggest problem of all started when I began seeing specialists.
I have something you cannot see, touch and cannot be diagnosed by any specific test. It’s a group of symptoms put together. Faced with something like that, trying to deal with my own pain and having to repeat it so many times to so many doctors leaves a feeling of deep anxiety. I would even call it depression. But I will talk about that another time.
The stigma that comes with being disabled is a hard one to bear. It changes not just how others see you but how you see yourself.
Behçets has changed me definitely, for the better? I think possibly, but not for my girls. We love each other unquestionably and they never know what it was like before so it’ll just be the norm. My wife is amazing, a woman who holds my heart and keeps me on my toes every day.

I will get there, we will together and life is pretty amazing.
But my challenge right now is getting work sorted. I am currently stepped down in position and I want my job role back…..

Best get back to my desk. Haha!

Have a good day folks whatever you’re doing.

Hello world!

Welcome to my first blog. Its time I started talking about all the things that have been happening to me and continue to happen. I think it might be good to give you a bit of a background as to how I have gotten to where I am before telling you all about what’s happening now…

As a child I was quite lonely, I had friends – but those close to me were few and far between and I have never really kept more than a few friends close to me and those are still close to my heart.

So it should be no surprise then I guess that when I started to socialise in college I made the most of it. In my twenties I was a party animal, out most nights of the week and living life to the full in my own way. Drinking more than I should, smoking heavily but at the same time working out at the gym keeping my outside looking good while I abused my body inside. I worked between 40 and 75 hours per week and really lived through my work. I loved it – it gave me a real sense of identity, freedom and again access to more nights out.

I have been on the most amazing journey during the last few years, in particular meeting my wife was course a real mile stone and a life changer I guess you could say. We fell in love quickly, moving in together 5 months later which involved me moving over 200 miles to be together. A decision I haven’t regretted since making it.

I am a proud father to 2 beautiful girls Eloise and Georgia, who like their mum – light up my world every single day. I cannot really remember a time without them and its the most amazing thing to watch them both grow into their own little people.

I guess the story surrounding my illness would start with a series of accidents that have triggered something in my own body.

Firstly I suffered a head injury, I hit my head on a solid metal beam that was the top of our door frame in our first house, I don’t remember much other than being at work and then being at the hospital.

I had a small bleed on the brain – nothing serious apparently but enough to cause me to have slurred speech a dropped left sided face and serious concussion. Next came a car accident that I was incredibly lucky to walk  away from.It shook my whole body and I remember the sensation of my eyeballs shaking and the glass shattering from behind. Just awful.

I started to get the oral ulcers after the accident, so I figure that this is what started the behcets disease.