So very pissing tired.

Argh I am so tired.

I'm not sleeping and am constantly aching. I know there are others out there like me, I even found a couple on twitter a few days ago, by using the tag #ankylosingspondylitis. There wasn't much there, but one person gets chest pains too, which suprised me (& the person when i said I get chest pains too) as it seems to be a rare symptom for AS. Nice to not feel alone.

The sleep deprivation I'm experiencing is a joke, and really starting to take it's toll. I get up and eat chocolate and/or cereal 3/4 times a night. It is quite funny I guess, but add to that the pain and stiffness I'm feeling and I'm left at the point of exhaustion daily. Then add the pain killers and other medication I'm taking- I've bloody had enough!

I can barely function at home or at work, I just feel.... ill. I wonder if nicotine withdrawal plays it's part in all of this? I'm so proud of not smoking but I must be careful- I'm still addicted to nicotine and have to wean myself off of it. CONSTANT VIGILANCE!

I have a really huge, literally life changing few months ahead of me. Next year I will be starting a new life. I'm putting a lot of hopes on this anti TNF treatment, which is a bad thing to do. If i have problems with it I could end up in a very bad place. I don't want that. I don't want to drag myself and my family down. I want to lift us all up.

I need to exercise. I never have. But it is so important for people with Ankylosing Spondylitis to exercise. Swimming is supposed to be especially good. But I'm not exercising. Hell I've just given up smoking, the only exercising I'm doing is with my fecking jaws, chewing down literally double the food I was before. I swear I've put on half a stone in a month.

You're at a turning point Mark. Life could go off in many directions over the next 3/4 months. Make good choices. Chin up.

I really am too tired to carry on tonight. What a shitty post.

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*

WINNER. (Almost).

So I've got this annoying niggle about the peom I wrote- "an ode to cigarettes". 2 views according to my blogger dashboard thingy. TWO views! I'm not trying to be funny or anything but those two viewings were almost definitely me going back to admire my self proclaimed poetic ability.

A week later, I wrote a blog titled "the late club". I was trying to be humorous, I don't do "late" like other people, it was about 10pm. Tons of views. What did people think when they read the title? I'm starting some kind of twilight chat room group? Renting a function room in some dingy pub to serve Irish coffee into the night?

Well, at the time of writing, this post has no title. I'm toying with "don't read this, read my fecking poem" or " I'm not starting a fricking chat room". Hmmm.

I do like ye old blog though, I feel I'm getting into the swing of it now. It's just a bit of fun really isn't it. A place to share my thoughts, have a moan or even write the odd peom. Ahem.

Smoking. I'm doing well. I'm very proud of myself. Sometimes I feel almost god like in the control I am exercising over my own life. Sometimes I want a pissing fag. I am chuffed though (bad word choice), I don't even use the inhaler much *takes drag of inhaler before carrying on* which is in itself a real achievement. I'm almost a winner. WINNER. Crack open the champagne and pass around the big fat cigars, I'm (almost) a non smoker!

Cheerio.

The late club

Time for another late night blog! Yes, 10pm is late for me.

Hmmm what to talk about? Well, I haven't discussed smoking for a little while, let's try that.

I keep looking back at my "ode to smoking". How poetic. I wear my heart on my sleeve I do. A real weakness if you ask me, however it can at times inspire trust and respect in others. I'm also quite vain when I'm not being insecure. Hence I have no problems in saying that the poem i wrote is the bollox (that means it's very good).

The cravings have gone down. A bit. God, I'm eating a lot! I don't wanna be a fat bastard. It's almost too late. I've always been pretty lazy when it comes to physical exercise but I was always drinking and smoking heavily without the food so it never mattered... This bloody lifestyle change is a major chore. When you give up smoking you're supposed to be happy about it, and I was for a little while. But I keep seeing myself as a thin smoker, enjoying a fag and a pint and I MISS it. Funny that it also strengthens my resolve. I WILL BE A NON-SMOKER ONE DAY. And when i say one day I mean I will beat the nicotine addiction. I don't smoke. But I do walk around with a nicotine inhaler behind my ear/in my mouth and I crave cigarettes every so often. So I'm not through this by a long shot.

The road goes ever on and on, down from the door where it began...

Time to sign out. *reaches for chocolate bar*

The obsessive ramblings of a possible/hopefully soon-to-be ex-smoker

I'm tired. It's late. I should be sleeping but my Android tablet addiction won't allow it. So I'm going to write for a little while.

If i didn't have this tablet addiction it'd only be something else. I have an addictive personality you see. I'm not afraid to admit it, in fact I think it's positively healthy to show obsessive interest in some things. It allows for "progress" in the world. If individuals hadn't shown obsessive hard work and dedication to their studies just think of some of the things we would be without. Inventors, after all, are for the most part obsessive crackpots; mad scientists... I told you I was tired.

Anyways, my personal obsessions have always seemed to be less productive and more harmful than what we might expect from Mr crackpot inventor man. And probably easier for many people to relate too. SMOKING for instance. That's right. Every last letter I have typed was getting me to that word, this subject- SMOKING. I joke on twitter, I joke with the truth. The reality is I DO miss smoking, in a not funny kind of way. I also don't miss it at all.

You see, smoking wasn't/isn't just (I use the word JUST loosely) an addiction for me- it's an obsession. I have an addictive personality, I become obsessed with things. And to become obsessed with something addictive is dangerous. But I have to ask myself a question- what came first; the addiction to smoking or the obsession? I'm not sure it matters. Either way, it's been a long 16 years, and an even longer month.

Yesterday I had my 1st serious craving for a cigarette since quitting. That worries me. I gave up almost a month ago, shouldn't I have felt cravings this strong within the first few days? Yesterday was a real struggle, but nevertheless I manged to still be around smokers and not smoke myself. MASSIVE achievement taking into account how weak willed and obsessive I am. Man, I sat next to Duncan for over an hour recording the podcast (www.idroidpodcast.co.uk) with a box of the finest tailor made cigarettes sitting on the table whispering sweet nothings to me the whole time. That's right, I'm bearing my heart and still manage to plug the podcast. Check it out, it's very good.

Well I guess I should "keep up the good work". I should probably try something other than the inhalers on the NRT. I want to keep going. I live in a better world now, I'm proud of myself and often feel a real sense of accomplishment- I've never achieved anything like this before. I just feel down sometimes and genuinely miss puffing away on a home made rolly. Oh well. More optimism in the next post please Marky K, but thanks for a good read anyway.

I'm tired.

*puts tab down*

An Ode To Cigarettes

Oh my Sir Walter, what can I say?
You introduced us to something that just won't go away
No-one is left out, no ethnicity or race
We live breathe and die, together in one place.

Culture communes, bridges all gaps of class
To be enjoyed by the masses, we can all breathe our last.
The romance of nostalgia and the innocent breath
As we all breathe down deeply one step closer to death.

A certain beauty is present, an addiction to peace,
The way we relax and fight off daily grief.
For better or worse something good must have come
From polluting our friends, strangers, lovers and lungs.

So give me a rolly, a cigar or a fag
A pouch of the best, or a box, or a bag.
That sweet sweet aroma, swirls round inside me.
Killing me slowly, as happy as can be.