When Dr Stone suggested I attend a two-week AS course at the Royal National Hospital for Rheumatic Diseases in Bath, I wasn’t sure what I would be letting myself in for. She said it was a course of intensive physiotherapy, which would increase my movement and give me an opportunity to understand AS.
I will freely admit when I agreed to go, and then set out for Bath, I was really anxious. Just going away from home for two weeks, when you have a child and partner you’re leaving behind, is nerve-racking, but going into a situation where you don’t know what to expect makes it even more so. And if you’ve read my very early blogs, at the beginning of my story you’ll know that I had spent far too many months in hospitals, so even the mention of going into hospital filled me with a fear.
When I arrived at the hospital, with my husband carrying my case, my first surprise was that we weren’t staying on a hospital ward, that was a pleasant surprise, already I felt better. We had a room each, in accommodation near the hospital.
Obviously other people on the course were arriving with their families and partners too, and I remember watching people and wondering what life was like for them, and if we’d get on.
There were five women on my course, including me, and three men. Apparently it was unusual to have so many women.
When we arrived we were measured to see how tall we were, how far we could bend forwards and sideward, how far we could turn our heads and open our legs. Then we had to fill in a form scoring the level of various areas of pain between 0-10, and giving the level of impact the disease had on our lives between 0-10. It was having a significant impact on my life, and my scores were high. But to be honest even seeing the questions which clearly showed the hospital understood AS, gave me comfort.
The first evening I got to know the people on my course. Eleanor whose husband worked in the city, (funnily thinking about it now, probably the person who I borrowed the name of for the lead female character in my first novel, lol). It was Eleanor’s first course too. Julia, a young teacher, who was also on her first course and had only recently been diagnosed. Ros, who was a self-employed masseur, whose mother had AS, and had known she had AS for a long time. Another woman whose name I can’t remember, but who had known she had AS for a while, and seemed to have every symptom. She worked a couple of days a week in a nursing homes, helping people exercise and she came from Wales. Hedley, who was self-employed and the most knowledgeable about AS. He’d known he had it for years, and worked with NASS and the hospital to try to increase awareness. Then there were two other men, whose names I can’t remember, a vicar, who may have been called John, and a mechanic, both were also attending their first course.
There seemed to be an instant camaraderie, and I think already on the first night, I was thinking less about home. It was just so amazing to be sat in a shared sitting room talking to people who didn’t look at me with blank disinterest when I talked about my illnesses, but nodded and laughed and said, “Yes, me too, then when I…” and went on to explain a situation or a moment that I could equally understand. It was so liberating and refreshing.
People got out of chairs with the same awkwardness I did, people understood when we discussed times of not being able to walk at all. It was like we’d known each other years, we’d felt and done so many of the same things.
I hadn’t even realised that when I craned my neck because it got stiff and painful, that this was a symptom of AS, until on the course several of us were doing this. We went to the Theatre one night, as evenings and lunchtimes were your own, and it was so funny as we sat there stretching our necks. Julie and Hedley turned to face one another stretching at the same moment and laughed.
One night we went to an Indian Restaurant and had been sat on hard seats and all got up slowly and stiffly because our sacroiliac joints had seized.
Amazing, I was no longer an abnormal person, but just the same as everyone else. It was the most wonderful thing to have AS friends to talk to.
On the course, we did daily physiotherapy, stretching out muscles which had instinctively clasped tight with pain. I had the classic AS posture, I discovered. I knew at the time, I had been walking with a granny style, shuffling along, for a long time, all bent over, tilted forward and hunched, and now I knew that was another sign of AS. The physiotherapists explained that when you are in pain your muscle instinctively tightens, in a response to draw your hand away from a fire, or something like that, and to splint an injured joint until it mends. But the problem with AS, is the pain doesn’t then go, so your muscle stays clasped and then you naturally start moving in a way which avoids having to move that muscle. Hence you ended up hunched, with short tight quads. So the whole course was focused on stretching out those muscles that had got short and tight. We exercised in the gym, in the hydrotherapy pool, and taking part in daily stretching sessions, which the RNHRD taught us to start leading ourselves through, so when we left we could carry on doing these exercises and ensure our muscles didn’t stiffen again.
If you remember my blog on the physiotherapist who gave me a course of acupuncture, her philosophy was that if it causes pain don’t do it. But this is where I discovered that her advice, as far as AS goes, was completely wrong. You have to work carefully through the pain with AS, if you give in and stop moving and let the clasped muscles have their way, then you might never be able to move from that position again. AS could not only cause inflammation and therefore pain, but it could also cause your bones to grow in places they shouldn’t grow. It could make the vertebrae of your spine grow and join together. Therefore it was essential you keep moving.
On the course someone spoke of a man whose spine had sealed up while he was hunched, and he’d told her that she should exercise, because his biggest sorrow was that he could never look up at the sky.
One of the physiotherapists at the RNHRD has a saying, ‘that exercise is like a fast flowing river, if you move a joint regularly then your body can’t lay down sand (build up bone)’.
My husband came to visit me at the weekend, and by then I had established really strong friendships with others on the course. I spoke to him of their experiences, and of how amazing it was to be among people who really got my illness because they had it too, and he could see them moving like me. It brought on a huge shift in our relationship. For the first time he realised he had a wife with an illness, and not someone who just moaned a lot, couldn’t do a lot of stuff and struggled to get around.
He had a label for my AS, just as I did, Anykylosing Spondylitis, bearing in mind he’d married a healthy person, who had become sick two months after marrying him, and had never truly recovered, he had anger and annoyance he carried too. He could put his feelings and anger in a box now also, and say he was frustrated by my AS, not me. He became far more supportive, and at the time as he watched me talking to others about the things he’d never really understood, I could see emotion in his eyes.
They say knowledge is power, and this is the belief of the RNHRD. They give you as much knowledge as they can, to enable you to understand and to battle AS at its foundations and without fear. They explained how pain works, how it carries through your nerves, so you can understand and think more carefully about how to break it. A pharmacist discussed the medications used on AS, so you would know the risks and could be a part of the decision when these were prescribed. They talked about sleeping, and posture, about how to get support in a working environment. So much knowledge, I felt my eyes opening, it was wonderful to finally understand all the symptoms which had confused and terrified me for years. They didn’t scare me anymore.
One of the elements of support you are given on the course, is two sessions with a counsellor, who speaks to you as a group about the emotional issues of living with AS. It was in this session that I had the biggest revelation. We were all talking and some people spoke of the fatigue, people think of it as tiredness, it isn’t tiredness. I’d never been able to explain it effectively to anyone. Then in this conversation the vicar, who I’d already discovered was doing all the things I was doing to fight fatigue, like we both got up in the morning and ate porridge, to try to immediately get a bank of energy in. He said, “and sometimes the energy just drains out of you all of sudden like someone has pulled plug from your heal.” That exactly described the feelings I’d been getting, it was like you felt as though you were going to collapse, but you didn’t collapse, it literally felt like water drained from within your body, but it wasn’t water it was energy.
The counsellor, simply nodded and said, “Yes, that’s fatigue.” It was said with such simple language and agreement, when for four or five years I had been trying to explain this to people not knowing what was wrong with me and thinking I must have had something that was going to kill me. They had never understood, they’d simply looked at me blankly like I was mad. It was just fatigue. I didn’t need to be scared of that feeling. It was extremely freeing to, again, put a label against that feeling. The vicar and I then spoke about how hard it was to get through a day, how we had to change our lives around this lack of energy. It felt brilliant to be able to talk to someone who knew how I felt, who felt the same, and so odd to keep discovering that the workaround in behaviours and ways of living I’d established, others had all developed too.
We walked to a pub one evening, and I remember the conversations as we hung back for Julia whose knees didn’t want to move. She told me that her joints were always worse a couple of days before a period, because your hormones slackened your muscles then. I’d never noticed that, but it was true, I’ve noticed it since.
We spoke one night about working and both Ros and Hedley said it was so much easier to be self-employed so you didn’t have the burden of having to get in on days you were struggling. Julia, myself and the lady from Wales, were all working jobs with adjusted patterns, giving us shorter hours, or periods of working at home. The guy who was a mechanic, and therefore had a physical job, found his job the hardest. Ros said massaging others actually helped her stretch. Julia decided she could get her primary school students to do her stretches with her in the day as a bit of Physical Education.
I was in an office job, I’d have to remember to get up and keep moving. I was already writing then, writing had got me through a lot of my illness, I longed then for the success I’d already been waiting for for a couple of years to be able to make a living from writing. If I was just writing I could manage my days as I wished, walk the dog in the day, go to exercise classes, just chill if I had a bad day. Finally many years later that is a possibility for me, though I’m not there yet. But when my novels are published this year, I hope, if they take off, that I will be able to give up the office job in two or three years, and then my AS will have even less control of my life.
We talked about looking after children with AS, too, and shared stories, but also encouraged Julia to just go for it, if she wanted a child, and to not let AS hold her back. The last time I contacted to Julia, before we lost touch, she had just had a child.
Well this blog has become another essay, but I think my first RNHRD course had to all be squeezed into one blog.
But now you are wondering what I’d gained at the end of my two weeks in Bath. Primarily AS friends, people who made me feel so much less alone. Inches of movement, I was no longer hunched. I was taller by an inch and half. And I’d gained a huge back pocket full of knowledge which would help me fight AS far more effectively. It was no longer the invisible monster under the bed, or unspoken of Elephant in a room. It was box labelled Ankylosing Spondylits, which I could now open and look inside when I needed to think back and consider something I needed to know about it.
So in my next blog, there’s a little more to share on things I discovered on the course, and then the following week, I’ll start talking about what the longer-term impact of the course was on my life.
AS is my burden, writing is my escape.
And if you are looking for the best help to improve your Ankylosing Spondylitis then for me it was the AS course at the Hospital for Rheumatic Diseases in Bath, UK. It changed my life (You can attend as a private patient or on the NHS). And if you would like more information on AS take a look at National Ankylosing Spondylitis Society, NASS, website.
My debut novel is due to be published 2nd May 2013 (writing fiction has been my preferred painkiller for years and now I can share my escapism characters). Sapphire Star Publishing are the publisher. If you want to find out more go to www.janelark.co.uk like me on Facebook or follow me on twitter @janelark