In the beginning, the pain was bad. In my eleven year old experience, there wasn't anything comparable. Not even when I needed seven stitches and they had to scrub the gravel out of my knee when I was ten was that bad. It started off in my right hip and soon after I wasn't able to bear my own weight on my hip joints as it hurt too much. When I was first hospitalised, I was put on high doses of asprin as even though they had a fair idea of what was wrong with me, there were a number of things that needed to be ruled out before they could treat me with arthritis drugs. I guess the asprin helped to some degree but it also put trains in my head. I could hear them above all else choo chooing their way past my ears. Over time, a diagnosis was made and I was put on prednisone and Voltaren. Other drugs were trialled in the first year. I don't remember all of them. The one that I do remember was something called Intragam that was a blood product that was supposed to help fix whatever was wrong with my immune system. It was a series of infusions that I had to go back to hospital to have. I don't think that any improvement was associated with this treatment as I only had one series of them. My condition was pretty nasty for about a year. Prednisone and Voltaren were prescribed. For the first year I relied on a wheelchair. In the very beginning and for the first six months or so I couldn't bear my own weight. I could take a few steps but I would need to be supported or learn on walls or other things to help take some of my weight. After then, things started to get a bit better. After about a year I had the strength to walk again. I'd never run any marathons (or any race really) but I could get around. At about that time, the meds managed the pain reasonably well. I had good days and bad days and over time the good ones outweighed the bad. I don't remember any really bad flares after then. I didn't miss out on much at school except for sports and I can't say with any certainty that I was disappointed. It just isn't something that I remember.
I ended up on Voltaren as the longer term solution. The next decade went pretty smoothly and the meds dropped to 50mg once a day. I knew when I missed them but otherwise there was nothing to really complain about. I misbehaved like most 17 - 19 year olds (Actually this probably went on until at least 21 if I am going to be completely honest). I think that the Voltaren did it's best work with the sore muscles and bruising on my shins from being pushed up against the speakers on the stage on Friday and Saturday nights in the mosh pit at Her Majesty's Bar (only when Blah Blah Blah and Alimony were playing - was almost my whole 18th year out on the town). I wasn't any worse off the next day than my healthy flatmates. Sometimes I think I even fared up a little better.
You can't be 18 forever but life really didn't change noticeably until I was about 22. It was about then that I started to need to increase the Voltaren to 100mg a day every now and then to accommodate for the times when things went wrong and I didn't pick where my limits were. It only really occurred if I overdid it and mostly I was pretty good at managing my days so that I didn't push it too far and ended up in pain. My range of movement had started to slowly diminish and the limits that I had were slowly decreasing. It wasn't anything that caused any huge disruption to my life and the things I wanted to do, I just new that things were changing.
About ten years ago now, a friend of mine had been telling me about this fantastic Physio that I just had to go and see. He and his wife had fantastic things to say about this guy. I was skeptical. I had been to see physios before. They were there to make sure that things didn't get worse. There to make sure that my range of movement didn't decrease anymore by doing one boring exercise after another. Physios meant splints to make sure my joints didn't get anymore deformed. It was the same thing over and over. It almost seemed like giving up. I did have some lovely physios when I was in hospital as a child but I didn't see positive results. Or at least not positive enough to remember when things were so horribly painfully. Unfortunately, at that time in my life, there probably would have been very little that brought positive relief to me. Managing my condition at that time was about making sure that the active disease left behind as little disfigurement and damage as possible.
I don't even remember what prompted me to actually get over my preconceived ideas to make the phone call to make that very first appointment. I guess to some degree I was curious as to what could possibly be different about what this guy did that was any different to make so much of a difference to my friend. The concept of life being better for my friend was enough of a lure to at least try. I wasn't completely convinced that anyone could do anything to help me feel any better. I was living the best life that I could. There was pain and limitation and I did need to make accommodations but life was good. Besides, it wasn't my muscles, it was my joints and the damage left behind from it's earlier activity. What good could more exercise do since I was fairly well adept at managing myself to the limits. Oh hell, what was the harm in trying. Even if it didn't work out, at least I'd tried.
I don't even remember that first appointment at all. Something must have made me trust that this was something worth doing. Something must have at least dented my preconceptions about what physio was and what more it could possibly do for me. Over the space of the next ten weeks, Paul worked on releasing the muscles and connective tissue. I'd walk out feeling like I was floating or walking on pillows. I didn't realise until then how much of my pain wasn't actually my burnt out joints, but the muscles surrounding them that were so tight, a tight that couldn't really be stretch out due to joint limitations and the limitation of my knowledge of my own body. By that point, I too referred to him as magic.
After a few weeks, inspired by some pretty amazing improvements in my range of movement, posture and overall positivity and feeling of wellbeing, I decided that it was time to check up on everything and I went in search of a new rheumatologist. I'd booked an appointment soon after my trip to Melbourne for a conference.
By the time I went to Melbourne, I had been to about six extended sessions with Paul. Coming back, I happily reported at how much more free I felt, how much further I could walk without pain, how far the 'limits' of my days had been reduced. In just six weeks of treatment. I wasn't ever going to get all my range of movement back as the joints were just too damaged but some of it was returning. The most I could get out of life was so much more than I thought it was.
This really was the beginning of a whole new story.
To be continued....
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