I apologise for keeping you in suspense for a fortnight for this. My life is just far too busy for a person with AS, sometimes I keel over. But hey, you must have goals – and that’s another blog to add to my list – it just keeps growing.
If you’re reading my AS blog for the first time, then I’d suggest you read my last post before this one, to get the full story. And a quick point, before you read my diagnosis story, I have recently met someone where I work, whose received a potential diagnosis. She’s only had symptoms for two years, and for her, it’s been a really scary thing to think she might have AS. I have also met other people who were upset and afraid by diagnosis. So this story in no means belittles your feelings if you are in that place, I completely understand that for some people diagnosis is terrifying and if you are in this place, I’d contact NASS. But for me, who’d suffered symptoms for fifteen years and not known what they were, and been disbelieved and not treated, diagnosis, was manna from heaven.
The night before I went to the Royal National Hospital for Rheumatic Diseases in Bath, I sat up until 2am in the morning, writing a spreadsheet of my symptoms in an Excel file. There were about forty-five. Over analysis, I know. But that’s what you do when you are ill and you don’t know why. You feel everything and try and remember to tell a doctor, in the hope that they will at last recognise what all your symptoms put together mean – and then you can get help.
I don’t think I slept when I went to bed either. I think I lay there wide awake, rehearsing what I’d say over and over again.
All I wanted, was to know I wasn’t mad, to know that someone outside of my body could recognise all the things going on within it, and that ultimately that would mean I’d get help.
I was trembling inside like crazy, when we went to the hospital. Which meant I also had to find a loo regularly for my IBS. I was so terrified of being turned away and told nothing was wrong with me again, when I knew I was seriously ill and something had to be wrong. But I’d been denied help so many times before. I was almost afraid to ask.
My husband came with me, he never usually came to hospital appointments with me, but I was just in such a state that day, and he did know how ill I was, he had to look after me all the time. (Oh, that’s another blog – it’s now on the list). I don’t think we talked much, I was too anxious.
The nurses in reception took my blood pressure when I arrived; no one had done that for years. It was apparently really low, so mush so they checked it twice.
I watched other people going in to see the doctor, all the time sitting there rehearsing what I’d say, as I’d been doing all night and all morning, trying to make sure that I captured all the points I’d put in my excel spreadsheet, and said and did everything I could to try and help them diagnose me. I felt every ache and pain in my body while I sat there, again trying to remember where they all were, and what they all felt like.
Then Dr Stone came out and called my name. The RNHRD was so different right from that moment. She looked me in the eye and I could just see she was going to give me the time to speak. Maybe she saw how anxious I was. She welcomed my husband and encouraged him to be a part of the conversation, something no one had ever done before.
As I sat opposite her, with shaking hands, and a sick feeling in my stomach. She said, “So what is it that you want out of your visit today. I see you asked to be referred?”
I said, and I know there was a note of plea in my voice, “I just want a diagnosis.”
She smiled and said, “Well we can do that for you, that’s no problem, we can let you know if you have AS or not.”
There was so much belief in her voice. She didn’t doubt it for a moment.
I think my heart stopped for a beat, and I felt cold. I couldn’t believe it. I was actually going to have what I was desperate for, just like that.
Well it wasn’t quite just like that. But that day, Dr Stone spent a long time talking to me, and listened to everything I had to say about my symptoms. It was the first time I felt as though any doctor had taken me seriously, and cared what was best for me. She examined me and checked where my pain was, then sent me for an x-ray of my pelvis to look at my sacroiliac joints.
She couldn’t see anything obvious on my x-ray, and my hope plummeted when she said that, but unlike my local hospital, who’d taken x-rays before and told me they showed nothing wrong. Dr Stone said, it didn’t mean there was nothing there and she’d send it for the specialist to look at and see if they could spot anything.
It meant I had to bear a few more weeks without knowing. I was in that limbo state again. Going into work and carrying on with life as I’d always done, just coping, and waiting. Then I was asked to have an MRI scan at Bath, as they hadn’t been able to pick up anything on the x-ray.
My heart was pounding as hard as the scanner as I lay inside it and it banged away with a deafening noise that’s like something from a sci-fi or a horror movie. I prayed something would show. I prayed I’d have a diagnosis. I mean it was still hurting, and I had so many symptoms which matched AS symptoms, it had to be AS… didn’t it.
I was anxious and terrified again when we went back to see Dr Stone. Did the scan show anything or not? Again at my local hospital I’d had scans and been turned away and told they showed nothing even when I was in agony at the point I had the scan.
But Bath had people there who focused on Rheumatic diseases, they knew what to look for, even if the signs were only small. They spotted inflammation in my joints, and Dr Stone said, “You have Ankylosing Spondylitis.”
I think I smiled the biggest smile. Probably an odd reaction to being told you have a progressive, degenerative disease, which has no permanent cure. I didn’t even know there were treatments that really worked on it then either. I was just so happy to be told what was wrong with me. What was wrong with me had a name, and boundaries. It could be put in a box in my head labelled Ankylosing Spondylitis. I could look it up and understand it, and learn all about it, and know what to look out for, and know what wouldn’t happen. I didn’t feel afraid of my illness now it had a name and boundaries. I could fence my fear in, to the limits of AS.
If I could have skipped, I’d have skipped out of the hospital, :D – I can’t skip, my legs don’t move that well, lol.
But I was so happy. I went home on a high. I could go into work and not just be that useless person who everyone sees not pulling her weight, I could be that person who had Ankylosing Spondylitis, which means we need to be more considerate about the fact she has limitations. (That’s another blog).
Even my family finally realised that I wasn’t just lazy and irritable but genuinely ill (and another blog).
Even all the friends I’d lost touch with because I was too ill to socialize at all suddenly got back in touch to be sympathetic. (I think I’ve already written that blog).
Oh and joy of joys, I didn’t have to keep analysing every ache, every wince, every sick feeling and moment of faintness. I could just live, within my AS boundaries, but I could just live.
I was no longer that person who was on the outside of society, diagnosis, and being believed as an ill person, had got me back into life…
So stupid, it shouldn’t have such an impact, but it really did.
And that was just my first step back into life, next week I’ll blog about my first AS course at the RNHRD.
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).
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