I'm on Wordpress now!

Hi all, please find my relocated blog here

http://whiteleyvon.wordpress.com

Thanks,

Mark

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 Well, actually I was a bit quieter than usual and found myself feeling quite withdrawn.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.