When I discovered I had Ankylosing Spondylitis there was a strange relief about it for me. It was the most wonderful thing to start talking to people who understood what I experienced. So this blog is really focussed on all you Spondy’s out there – Spondy being a patients of the Mineral Water (MIN) Hospital in Bath phrase. Although of course anyone is welcome to read it if you’d like to look in through a window at life with Ankylosing Spondylitis.
I was finally diagnosed with Ankylosing Spondylitis (AS) after fifteen years of inexplicable pain and that was when I discovered I was not alone. I’d really like others to not feel alone too. I hope in this blog you’ll be able to read things and think, yes, I had that happen. I wasn’t crazy. For non-Spondy’s I have to say crazy is no exaggeration, I’ve heard horror stories of people being given electric shock treatment because doctors believed the problem was in their head. AS really is a very poorly diagnosed disease.
This may at times become scarily honest I think, more regarding the issues it creates in relationships than boring explanations of pain. My intention is to write Wednesdays and Saturdays if you’d like to follow my story, I’m willing to share it with you.
So firstly for any non-Spondy’s, what is it? Ankylosing Spondylitis (AS) is a rheumatic disease, there are several, all linked to one gene in our DNA, it seems to cling to this genetic tag. I say all this as a non-professional you realise so you may not wish to quote me, but it is what I’ve learnt about it since diagnosis, from the MIN hospital and Spondy friends. It’s like being in a club when you’re diagnosed and meet other people with it. In fact in the UK there is a club for us, NASS, the National Ankylosing Spondylitis Society, who run physiotherapy sessions all over the UK for members. Anyway that’s an aside.
Still for non-Spondy’s; it is an inflammatory disease which means you get inflammation and swelling, caused by your immune system attacking itself, in any joint it fancies targeting and in any organ too, skin, stomach, bowels, eyes, kidney, heart, oh yes it’s a charming disease. I believe the MIN hospital once officially diagnosed it as ‘shitty’ (though not literally). It likes to attack the points where your tendons connect to bones too, yes, truly lovely. Not everyone who has the tag has it though, and I’ve been told by others you can also have it and not have the gene. I do have the gene.
It’s actually a common disease, though most people have never heard of it unless their diagnosed with it. Roughly 1 in 500 men have it, and 1 in 800 women.
It never seems to be exactly the same in any two people either, I’ve found through meeting people I see averages of 3-5 out of 8 who have a similar specific symptom but all mixed up in different people.
The common denominator though is its attack on your sacroiliac joints and spine. Sacroiliac joints – you’ll hear a lot about them in the early stages of my blog. In fact there’s only one person I’ve met through the MIN who had never had any inflammation in his sacroiliac joints, it had begun in his jaw, but for most people it begins in the back. He’s probably had it in his back by now it was a couple of years ago we met.
It is literally like a battle going on inside you. When I get pain in my joints or where my tendons connect I picture little men ridding into battle with their swords raised and then going at each other in a fencing fight hell for leather – I’m very visual and a bit mad – Hey, I am a fiction writer.
The thing about AS is it does not stop after the battle, when the inflammation decides to progress somewhere else, or rather when the cavalry charge moves on to its next war. The genetic twist of AS is it fools your body into thinking it then needs to heal the joint and you start growing bone – literally the bones of a joint grow together – and its favourite place to play soldiers is in your back. So it starts with your sacroiliac joints, an easy target as there is just a narrow bar between the bones in that joint and the joint never moves. Then it progresses to your vertebra and begins its charge all the way up your spine joint by joint. I’ve seen a number of x-rays of people in various stages, from at the worst where their whole spine has become solid bone so you can’t bend, and where ribs are solid too, with no soft tissue to let your lungs expand; to just the line of the sacroiliac joining up and in the middle when you can see the spurs beginning to grow from the edge of the vertebra reaching towards each other like fingers. I don’t know where I am, I haven’t had x-ray’s done in a couple of years but I know my bones are growing.
And this is the battle, because you can fight AS, but it is a constant war, and excluding medication, the best weapon is exercise, exercise, exercise. Another quote from the MIN ‘sediment doesn’t settle in a fast flowing river,’ keep moving, exercise daily, every joint. Easier said than done when you work fulltime and write for hours, I don’t exercise enough and I do feel the gamble as I sit here in the same position tapping away letting the sediment settle. Note to self – I really should start exercising more. Plan – when we move house I’m going to invest in one of those moving water small pools – when I win the lottery that is – laugh.
Anyway, that was another aside. Exercise can not only stop the bone sealing up but also weirdly chase away the inflammation, although not when it’s really bad. Only giving in to it and waiting until it passes win’s that really vicious war. I do remember two particular times though.
One – I have to say before I start this story I have a really strong determined streak, I find it very difficult to just give in to things. The result of a childhood with two working parents I think – ‘you can’t be sick and stay off school I have to get to work’. So I don’t give in. I will also say this happened years ago, but years after the beginning too.
One of my sacroiliac joints was inflamed that day – it was only in my sacroiliac joints for years – and I just happened to be obligated to do a sponsored cycle ride with my daughter. I can’t remember what age she was then, somewhere between six and eight probably, certainly the age she would not have wished to go without her mum, and my husband is not the sort of person who does stuff like that so I could not have passed the role on to him. I couldn’t let her down but I was struggling to walk and couldn’t put any weight through – say my left for benefit of the story – hip. (I’d devised a very clever way then of standing all on one leg while I looked as though I stood on two, only downside with it was that generally I then made the other sacroiliac joint get inflamed too – very bad idea).
Anyway more asides, well I did not give in, we started the ride with me using only one leg to cycle I couldn’t put any pressure at all through my left leg. I did keep my left foot in the peddle though, so my leg moved round when my right cycled and low and behold having been in agonising pain after about half an hour cycling, it went. The inflammation just suddenly seemed to disappear and I started to cycle with both legs and at the end of six hours cycling (with breaks I wasn’t that mean to my eight year old daughter) I could stand without any pain. I had not been diagnosed at the time and it was things like that which really seemed to fox the doctor. Once I’d discovered AS it was one of the things that helped to diagnose it.
The second story I particularly remember with a bizarre recovery like that was also years ago probably when my daughter was a similar age in fact or slightly older. We’d moved house and my husband – who at that time really had no understanding of my undiagnosed problems, but then nor did I – had been decorating. I’d had a bad patch and been limping round the house and struggling to move and stand. Well he’d had enough of having to do everything himself and had a good moan at me that at least I could do some painting even if nothing else. So I attempted it. When joints are really inflamed they get really stiff too – I was not in the bone growth stage then – and the room he wished me to paint was the kitchen, with loads of awkward spaces to get under and lean over. With stiff hips? Really? You’d think it was impossible wouldn’t you, but let me remind you, I’m determined, so I set my mind to it and began. I was in agony but gritted my teeth and bore it, twisting into positions and getting stuck there and then having to ease my hips and legs back into motion and then I started doing the edging below the ceiling, stretching up – and stretching hurt just as much as bending. But then as with the cycle ride, the pain just suddenly, had gone – I say had gone not went as I didn’t notice it go, it wasn’t like it clicked or something, I just realised it wasn’t there anymore at some point while I was working. I don’t even really understand why, and once the inflammation had gone it didn’t come back for a while.
I have to say though before I get the hopes of Ankylosing Spondylitis suffers up too much, it did not always happen like that, for those two stories there were dozens where I tried to recapture the something that made it go away and never succeeded only ended up far worse. Annoyingly there is nothing predictable about AS.
Anyway, all I shall say to close today’s beginning of my blog, following that story, is it began for me when I was twenty-four in a life changing instant when I was knocked over on a pedestrian crossing by car. See you on Wednesday, if you can make it, I hope you can.