Ankylosing Spondylitis.

I have Ankylosing Spondylitis. It's easier to say than spell.

I partly started my blog with this in mind, to share my daily experiences with the disease/condition/whatever with others and to act as a sort of coping method, somewhere to note down the bad days and the good and maybe hear from others who face the same or similar difficulties.

Some background information- Ankylosing Spondylitis is a condition where certain muscles in the body "fuse" together, becoming "bone like" and stiff. It mainly affects the spine but has been known to affect other parts of the body including the chest- and I know that only too bloody well. I THINK that's kind of basically what it is. Basically, I'm turning to stone (it sounds cool like that).

I've only recently been diagnosed, just a couple of months ago, but I've been suffering for years. It affects each individual in different ways, as mentioned, and it can often cause really bad stiffness in my chest as well as my back. I've often been diagnosed with chest conditions such as bronchitis over the years with no real evidence. And on many occassions I've been told that the reason my chest hurts is literally "because you smoke". Yup, SOME Doctor's really know their stuff. Anyway, with the official diagnosis of A.S, I'm stopping smoking. But that's another blog :)

My Nan had Ankylosing Spondylitis. Her whole life. She had a walking frame and could barely move. My Grandad dedicated his life to caring for her. As a child, I loved her so much, and I'd often watch the way she slowly moved from A to B and not really think anything of it. She was Nan and that's how she was. But these past couple of months I've been thinking about her everyday. Which doesn't help with the quitting smoking thing seeing as she was a bleedin' chain smoker.

It's not as bad for me as it was for Nan. I can, and do work. I'm a major high flying management type who doesn't take shit from anyone. Just kidding. But I do work. It's been getting harder though. Mornings are BAD. it can take, on a bad day, a good couple of hours to lose enough stiffness and pain to be any use to anyone, at work or at home. I'm an arsehole too. When I'm aching (which isn't always in the morning, it comes and goes) just don't bother talking to me. Also, it really affects my sleep. I DON'T GET ANY. I'm tired. I have been for 10 years. Apparently, lethargy is part of the condition.

The reality is it's ALWAYS there, either to the point of being incapacitating, or just subtly in the background niggling away, reminding me of its presence.

So, my mum finally convinced me to DEMAND a certain blood test from my GP. I say demand as it was refused a couple of times before. To cut a long story short, I got the blood test, saw a consultant, had a load more tests including an MRI scan and here we are.

Anti TNF medication- I will explain what this is at a later date. But this is the (some say) "miracle drug" that I have now, after further assessments, qualified for. I will be starting sometime in December and will be sure to blog about this treatment leading up to commencement of the program. The reason I'm not starting it now is due to further health set backs which were discovered during routine tests that have to be carried out before starting the treatment. I have "latent TB". The depression this whole experience has caused me is hard to put into words, and when i was told about this set back, I hit another low. I have trouble coping emotionally with all of this. So I'm on a hefty 3 month course of anti biotics which I have to finish before I can start the anti TNF treatment.

I take A LOT of medication. It's a joke how much I take. And none of it feels like it works half the time. It makes me more fed up, drowsy, hazy, moody etc etc. But this anti TNF is supposed to change all that. We shall see. We shall see.

Tired now so an abrupt finish to this entry, but I can assure you more will follow.

I'd just like to point out that this is possibly my 1st "actually serious" post! More of my warped humour next time, I promise.

*salutes*