This week I finally come to the point of my Holy Grail, diagnosis, and after 30 posts, even if you haven’t read them, you can tell it was a heck of a journey getting to this point. But I am sorry to say my bad luck in the service and support I received through my local NHS didn’t stop at this point, I had an equally difficult journey in my diagnosis tale (although, as a believer in fate, I am beginning to think the 15 year struggle I had to get diagnosed, is finally showing its purpose, but that’s for another blog post 🙂 )
So let me just recap for you a little, at the time I had bowel problems, Iritis, sacroiliac (lower back) pain which had got better with movement for many years and I had stiffness in the morning that eased during the day. All these are very obvious signs of AS, but beyond these very obvious indications I had numerous other problems like pain in my back, neck, jaw, ribs, my collarbone, my fingers, wrists, feet, elbows and knees, and stiffness in my jaw, neck and hands as well as my back.
When this all came to a crux was after I had been diagnosed with Iritis for a second time, and I was using morphine patches to control the pain, struggling around on crutches and fighting to keep in work with a bunch of colleagues who really didn’t get how ill I felt and were unsupportive and condemning – finally I got to the point that I just couldn’t continue fighting. I gave up. I went to my doctor and said I can’t carry on trying to work, I need to just give in and take some time off.
I did. I took about five weeks off work, and during that time became very isolated due to depression, (ah, that’s another blog I haven’t written yet, I am going to have to start making a note of these and come back to them). But basically I didn’t go out at all, I became too afraid to go out because I was terrified of feeling too ill while I was out and not being able to get back home again. I knew there was something really wrong with me, I just didn’t know what.
I have never been one to look up ailments on the internet – it isn’t my personality type. I am an activist and pragmatist, I try to solve by doing, had I been more of a reflector and a thinker I might have gone to the internet months or years before to try to diagnose myself. I hadn’t. I was lucky then that I had a friend who was that type of personality. Cruel thought, because my friend was seriously ill with a tumour but had she not become ill I may never have been diagnosed, because her tumour was in the region of her sacroiliac joint and misdiagnosed as Sacroiliiatis. She looked this up on the internet, and then knowing I had sacroiliac pain which had never been called Sacroiliitis, just pain, and that I had recently had Iritis, she said to me when she came to visit me one day, (and I have to throw in another aside that at the time she was the only friend who was supporting me, because she was ill too and we started trying to help each other to get out and keep going together).
So anyway, when she visited me, she said, “Did you know that Sacroiliitis and Iritis are both symptoms of a disease called Ankylosing Spondylitis.” Such a simple sentence, but a simple sentence that went on to give me my life back.
I had never heard of AS before, like most people. I looked it up on the internet. Many more of the symptoms seemed to describe what I was suffering and feeling. I started seeing a bright light at the end of my tunnel. Perhaps I wasn’t just a lonely, isolated, freak who was going rapidly mad, perhaps there was something I had that was identifiable and treatable.
It said on the internet that if your GP thought you might have AS, and if you experienced an episode of Iritis you would normally be tested to see if you had a gene which was known to be connected to AS. I’d had two episodes of Iritis and neither my GP nor anyone in the hospital had mentioned this to me.
My next visit to the pain clinic at the hospital was within a couple of weeks, I said to one of the doctors I’d started trusting and developed a good relationship with what I’d read on the internet, his answer was, “Oh it’s probably just coincidence…” Even the possibility was completely dismissed. I was appalled by that response bearing in mind how ill I was by that point and just how hard my life was to live. I needed help. For the first time in all the years I’d suffered with AS symptoms, I had something tangible to fight against, something beyond just fighting to keep going despite the symptoms. I wasn’t going to let them fob me off without a definitive answer.
My next step was to go to my GP surgery, I asked to see a specific GP, I’d started just seeing the same two people so that they got an understanding of me and my illness in the previous year, so I went to one of them and told them what I had read on the internet and what I’d been told by the pain clinic. They agreed to refer me to the rheumatology clinic at the hospital for a blood test to see if I had the HLb27 gene.
I saw the rheumatology clinic, and they sent me for the blood test to check if I did have it. I went back to work during that period and started doing my best to keep my life going, while I waited, and waited, and waited, hesitating in life almost, wanting to know.
Six weeks later and I’d heard nothing. I went back to the GP who referred me, and asked what had happened. She rang the hospital while I was in the room to find out what the answer was. Perhaps it wasn’t professional of her to shout at the person in the hospital at the other end of the phone… I was glad she did, because it meant I knew she was on my side. My results were positive. This, if you know all about that gene, does not 100% mean you have AS, only that it is more likely you might have it. (Also, just for reference, having a negative HLb27 response also doesn’t mean you can’t have AS. The test is not definitive)
My doctor was horrified that they hadn’t bothered contacting me to tell me what the result was, and she told them extremely bluntly she was unhappy with their standard of service towards me. I left the room knowing I had a gene that might mean I had AS, I still didn’t know if I had AS.
I went home and waited again, and heard nothing from the rheumatology clinic, not a whisper. I waited another four weeks, still in limbo, still hoping I was on the border of getting some proper help that might make me feel better and not just seek to lower my pain to a bearable level. The contact never came. I phoned them.
I said, “I had a positive HLb27 response and symptoms of AS, I’ve not heard anything, what’s happening?”
Their answer, “Well there’s no point in coming in, there’s nothing we can do”…
What? What? All that hope and still no help. What? I couldn’t believe it. I was struck dumb. I was astonished and disappointed – no, way, way, beyond that, my entire world collapsed, I saw no future for me at all.
For years I had been fighting through to the end of each week for the last few months I had been fighting to get through to the end of each hour. How could I just accept that maybe I had disease, AS, and maybe not, but there’s nothing we are going to do about it anyway, no one is even going to talk you about it. What? I couldn’t live with that. I couldn’t cope with it.
I went back on the internet, I remembered seeing something about a hospital which specialised in rheumatology and offered to help people get a diagnosis. The Royal National Hospital for Rheumatic Diseases, in Bath, the specialist there then was Dr Stone. I printed off the page and rang the hospital. They said that’s fine they could help, I just needed to be referred by my doctor.
The doctor who’d rung the local hospital I’d been using was on holiday. I arranged to see the other doctor I preferred, the one who had diagnosed my first case of Iritis. I wasn’t taking, no, for answer. I went and said, “The hospital won’t help me, I want to be referred here,” and gave him the piece of paper. He looked a little perturbed, I don’t know if that was because he was angry at my local hospital or didn’t like being told what I wanted. I’m sorry on that occasion I really didn’t care what he thought.
He referred me…
I’m going to have to pause my diagnosis story here I think, otherwise this post is going to be an essay, in fact it probably already is 🙂 , but next week I’ll cover what happened when I went to Bath. Basically it was the pivotal point in me being able to live with AS. But let me continue next week.
As far as my local hospital goes, one day I’m hoping to publish these blogs as a book, and then I hope that not just my local hospital but all hospitals will learn the impact on patients through not seeking to diagnose people, and ignoring possible signs. Although I know that the National Ankylosing Spondylitis Society (NASS) in the UK, and the hospital in Bath and other places have already done a lot to improve awareness, the more personal voices and descriptions involved, the greater and the quicker the shift in understanding will be.
My Mum has a theory that my local hospital just didn’t want to fund my medicine. I hope that isn’t true. But whatever, I now avoid that hospital at all costs, because I really don’t trust them.
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