To be best placed to help others, you have to help yourself first.

So I'm still off sick, coming to terms with my "disease". And surprisingly I feel a little more up beat. At time of writing. In reality, I'm up and down like one of those round things on a string which go up and down. You know, kids play with 'em.

It's all mostly orientating around my medication issues. Bad times. Very bad times... But that's not what I'm writing about today...

I decided to go to Westminster yesterday for the NASS "sign up for change" campaign. I did it to meet more people in my boat, who feel what I feel. I dragged my wonderful Mother along with me. It was actually quite an eye opener.

I met two very lovely people with AS and they were very friendly and supportive, offering lots of advice and information. They had a couple of family members with them, and also a couple of very nice people who work for NASS came down and joined in.

We all talked a lot and shared some experiences. Well, actually I was a bit quieter than usual and found myself feeling quite withdrawn. I don't think I knew what to make of it once I was there. I found myself again thinking about my Nan a lot. I did open up about some of my feelings and anxieties, in fact I must of appeared to be a bit of a pessimistic moaner. Well, they are two of my main traits recently. They were all very upbeat and friendly and I feel bad for "moaning" about my life now as i think they showed more "physical" symptoms than me whereas I don't have any physical traits of ankylosing spondylitis (at this point in my life) but constantly feel the stiffness and pain.

The main purpose of the day was to raise awareness and try to get people to sign a petition to this end. I got two signatures. A testament to my enthusiasm. Well at least I had a go. It's not as easy at it looks; approaching people and trying to explain a disease I'm still learning about myself then asking them to sign a bit of paper to help raise awareness... Honestly though, I could have done better and wish I had tried.

I'm definitely glad I went. I gained new insight and met more people. I want to help. I want to help the National Ankylosing Spondylitis Society in anyway I can. My adult life has been all about helping others to improve their lives. And this is another cause for me to get involved with. This is something that affects me intimately, and I owe it to myself to do something..... I just don't know what yet. I still have to fight some serious issues in my personal life which are affecting my ability to function to the best of my ability. I need to sort myself out first.

To be best placed to help others, you have to help yourself first.

Thank you to all the new people I met yesterday. You were all so nice, so friendly and so supportive. I hope we shall meet again.

And thank you to my wonderful Mother who is quite simply, the bollox.

Thank you to my children, for giving me youth, and unconditional love.

And last but not least, thank you to amazing wife-to-be, who continues to put up with me being what can only be described as an arsehole.

Night folks.

The path am I on. Turning to stone. Pessimism. The future.

It's been a hard few days. I nearly broke. I have been struggling real bad for a few months but it got worse, to breaking point so I went to the Doctor & I asked for help.

What can the Doctor actually do to help people with incurable illnesses? Quite a bit, I guess. But for me, and the "Smarties tube" amount of pain killers I take daily, the GP offered me a final option- anti-depressants. Not the option I was after. I've been there and done that, I can't go back. I don't like to go into detail about this side of things, so I'll stop for now. Suffice to say I take a lot of damn medication.

I have visualisations of seeing myself turn to stone. Like daydreams. It's how I imagine Ankylosing Spondylitis- Slowly....turning....to....stone.... There are visualisations to combat and reduce the negative effects of all kinds of ill health, I like to believe that. And watching yourself turn to stone IS NOT one of them.

I watched a documentary once about this kind of therapy. A kid with a serious disease (I don't remember exactly what) was told to go to bed everynight and imagine x-wing fighters (from the star wars movies) going to battle with the evil empire space fighters (his disease). He did this every night for a long time, until one evening, he went to bed and there were no enemy fighters. When tested, his disease had disappeared. Now, whether this is true or not, I don't know. But it stuck with me. And (sad & geeky I'm sure) I have tried this many times myself, in different ways. I'm not saying it works, I just love the idea of positive energy and reinforcement. And hell, if you BELIEVE it works, then why not. WHY NOT.

I live with many other fears too. I'm a natural pessimist. God I hate pessimism. How can we move forward as people if we live in a world of pessimism? Pessimists are dicks.

If my kids or grandkids get AS, how will they deal with it? How bad will it be for them? What will treatment be like in 10, 20, 30, 40 years? It can only get better, surely. My Nanny didn't have as many treatment options as i have. Anti-TNF treatment is relatively new, it will be well developed by the time my kids have grown up and have children of their own. There could be cures in 40 years for all sorts of today's incurables, including AS. I hope so.

Back to today and things are not good for me. Signed off of work for 2 weeks. That is serious shit. I need to use this time to evaluate my life, and attitude. I need to turn things around. No easy task. December, when I'm due to start the Anti-TNF, is still a long way off. I'm ill. In more ways than one. I acknowledge that now. I need to work out what to do and how to do it.

That is the first step. Acknowledgment. And my foot is in the air.

Let's hope it doesn't land in a pile of shit.

Today, the woes of back pain, sulking and guilt.

OK this is my second attempt. I just spent an hour writing this post- my longest ever- only to wipe the bloody thing by mistake. It will now be know as "the lost post" or "the forgotten masterpiece".

What do you do when you wipe such a massive body of writing? Try to re-write it and be as true to the original as possible? Just leave it and start again tomorrow with something different? Write a short paragraph without mentioning tthe wiped post? I'm going to take the "over-exaggerate the length, splendour, and importance of the wiped post, talk about how great it was, then write a brief overview of the main points" approach.

The title and the labels stayed intact, it was the main body that disappeared. So I'll start again and see how we get on. Now-

Major agony this morning. It took me 5 minutes to get my socks on. 5 minutes is a long time when it's spent putting a sock on a foot and then another sock on another foot. It made me feel quite, quite useless. I then went downstairs and tried to put two shoes on. George, my 11yr old son, saw that I could barely reach my foot and to my embarrassment and dismay, came over to me, put them both on my feet and tied my laces. I nearly cried. Bless that boy. He shouldn't be helping his father get dressed at 11 years old. And I'm not an elderly person, this shouldn't be happening! Contrary to the beliefs of younger people, 31 ISN'T OLD.

It makes me feel so horrible and useless and embarrassed with myself. And it is seriously getting worse. The missis is getting frustrated that I can't help with the baby in the mornings. That makes me depressed and angry. Poor me, so misunderstood. (Sarcasm). Tensions are high. The constant pain and/or stiffness makes me behave like an arsehole. My partner is nowhere near perfect, but niether am I, and I'm oversensitive and uncooperative when I'm in pain. I'm best left alone. But that can't really happen from early to mid/late morning every single day.

The missis went out at 9am, and fortunately the massive amount of pain killers began to do their job soon after, and by 1030ish I was ready to take the kids out. Up just before 8am after the usual stiff painful night, then pretty much 3 whole hours later I'm ready for the day. Pathetic. When we got to the beach we had a lovely afternoon. Harry (my 16 month old) is just an angel. We walked for miles (well a long way) and smiled a lot. We found crabs, chatted to people, watched dogs running about, ran in the mud and splashed in the sea.

There was one moment though, wear I actually pretty much started crying. It's shameful. I think that the stiffness, the lack of sleep and the "causes drowsiness" medication I'm on make me easily frustrated and quick to anger. Especially when in a situation, for instance, where I'm bending over, seriously straining my back, with a screaming baby in one ear and a grumpy 11yr old moaning in the other. I just snap. I screamed at George and just started to sob and mumble, trying to make Harry comfortable and happy. After about 10 minutes all was back to normal but it was so horrid, I feel so guilty, full of "bad parent" feelings and all sorts of other conflicting emotions.

Before and after this moment the day was fantastic and we all had such a wonderful time, it was really special. It is so amazing watching my children bond with each other, and I'm so proud of them both. I don't want to be a burden on them, or anyone.

I really shouldn't behave like this about it all. There are millions of people all over the world who are worse off than me, and half of them don't complain like I do. This blog must make me look pretty selfish, uncooperative, depressed, pessimistic and possibly a bit neurotic. I am. I always get my own way, and when i don't, I sulk like a child and behave like a fricking arsehole.

So with that in mind, you go get me some chocolate to put in my fat belly or I swear I'll throw a full blown tantrum.

I've been able to sit up and re-write this post because the stiffness starts early evening now and pushes through the night, ensuring I won't sleep like a regular human person. Hence the constant exhaustion and grumpiness. In fact, If i hadn't already mention my age, it wouldn't be difficult to put me with the likes of Victor Meldew, or although not quite an old man, Doc Martin.

A poor and much shorter re-write I'm afraid. Missing some key points from the original. But adequate enough to tell a story in one way or another, for better or worse. I hope someone out their is able to relate to my tales. And if so, it's worth wearing my heart on my sleeve.

Let's see what tomorrow brings.

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.

Still not smoking...

Well, it's been over 2 weeks and I tell thee, the cravings don't get easier to manage. I know I'm obviously still addicted to nicotine as I'm using the nicotine inhaler, but man I just want a cigarette.

I HAVE lapsed- I have probably smoked around 10 over the past 2 weeks- but I'm not going to let that get me down- I have still made a great personal achievement seeing as under normal circumstances I would have smoked 10 before even midday...

I feel better. I actually feel better. This is because I have health problems which affect my chest, and smoking only makes the pain worse. So apart from extra pennies in my pocket I really am feeling benefits from being a "non-smoker". I think this is one reason why lots of people fail. People who are generally in good health don't feel any healthier when they stop smoking so why quit something you enjoy if you don't feel any benefits from it?

I really hope I can keep this up, but I am genuinely finding this the hardest thing ever. I WANT A FAG! Just remember Mark, the reasons why you are doing this- better health & quality of life, more sweet sweet money, Georgie boy & Harry hoo.

Bonjour.

No more smoking day 2

Wow this is hard work! I've been feeling tired and ratty, despite the inhaler, which I have been puffing on like a goodun. I feel restless, I don't know what to do with myself.

I think the hypnosis app helped last night. I am such a slave to cigarettes that I get up to (eat and) smoke EVERY NIGHT. I have done for years, even when I'm unwell. But last night I didn't! I went for a pee, had a drink and some chocolate, then after a couple of puffs on the inhaler I went back to sleep. I know that I had the inhaler and therefore nicotine, but I still think I'm allowed to be proud for not stressing my head off or searching for a fag high and low.

So in summary, this is not easy and I'm struggling. I'm also in the process of moving house amongst other huge stresses in my life. One could argue that I haven't exactly picked the best moment, but hey- at least I'm keeping myself busy.

2 days down (almost) and only the rest of my life to go...

No more smoking- day 1

I have some health and money issues, so for the hundredth time, I'm giving up smoking. I may just record my progress in this blog.

I have been a heavy smoker for years. It is a way of life for me. I ENJOY smoking. I went to my local chemist which is in asda and signed up for NRT (nicotine replacement therapy). You pay the price of one prescription and get your choice of nicotine replacement products. I chose the inhaler.

My logic is that I have to break a routine, which is just as hard as the substance addiction. With the inhaler, I'm still going through the motion of putting something to my mouth and inhaling. I can hold it like a cigarette. And I've decided to carry on going for "fag breaks" at work, but with the inhaler instead, as well as only using the inhaler outside at home. I plan to cut all of the routine down over time.

Also, as a reflection of the times, I have downloaded 2 stop smoking apps from the Android market. One is a hypnosis app- I have a few by the same guy and find them really relaxing, so I'm hoping it may have some kind of subliminally-positive affect... the other app is a sort of tracker. You enter your details and it gives you info such as how long it's been since> your last cigarette, how you should be health wise at different stages of quitting and also- my favourite- how much money I'm saving!

The picture is me smoking "my last ciggie". I hope. Soooo time will tell as they say. I hope I will continue to blog positive news as my journey progresses.

Totally new to this

This is attempt 2, I do not believe my 1st attempt was posted.

This is my blog, there are many like it but this one is mine. I wonder how I'll use it and if it will be read. My blog will be my journal/diary, somewhere to write my thoughts and views on any subject that I feel compelled to comment on.

Do people read blogs? If they do, will they read mine? If they do, I hope they like it.

Right, lets see if this bad boy works. *clicks send*