Friday, 23 January 2015
My AS(s) Pain Came Back For Christmas Visit
I have just finished watching The Crash Reel and it has massively inspired me to do something! If you haven't seen it then I highly recommend watching it. Please don't think I am comparing myself to what Kevin Pearce went through, I'm absolutely not. But I certainly felt I could identify slightly with him in terms of trying to express his passion for a sport that he might not ever be able to do again.
So, my AS was well under control for almost exactly a year, until Christmas struck. I could kind of feel it creeping up on me, with little twinges here and there. I let my diet slip and at the same time was working on a really stressful and tiring design project and it all caught up with me.
I don't think it is down to just one thing, but I do think it is no coincidence that the two big attacks I have had whilst being off medication have been during the beginning of the colder months of winter.
I think this has a lot to do with diet, and especially needing more sustenance in the winter to feel warm and keep up the body's metabolism. As the design project I was working on came to an end I also moved house, out in to the countryside in Sussex. After the project I started cycling 20(ish) miles to work, there and back and I was also cycling to go surfing. I think this also played a part in it as I just pushed my body too much and too quickly and it was also very cold so muscles weren't as flexible as they had been.
Another thing that I had let slip during this year period of very minimum pain was stretching. After my attack at the beginning of 2014 and after being given a steroid injection to get things under control I started doing some minimal flexibility stretches. I kept these up religiously for about 3 months but gradually stopped them, not completely but they became pretty infrequent.
Anyway, so my flare-up came over the few days before Christmas and got worse and worse. I was taking a lot of valium and Oromorph (morphine) before it got really bad to just try and relax my muscles so that it didn't get as bad as last time but unfortunately it did. It was the same deal as last time, but this time I was a little more prepared. My girlfriend took some videos and photos of the pain I was in so I can now look at them (as I am currently in pretty good condition and nearly 100% again) and remember how bad it was. It has been really important for me to do this as it makes me realise that I am in control of this and when I am in the pain it is my fault, I can stop this occurring (well I think so anyway!)
So a few days after Christmas I managed to get an appointment with a fantastic Dr at my surgery in Brighton, The Brighton Health And Well Being Centre - a truly incredible place and I am forever grateful for the help I have received from Dr Marshall Andrews, there. We were prepared after the flare up in early 2014 so she arranged a steroid injection. This really calmed things down and enabled me to walk again with out feeling like my pelvis was going to shatter and become dust (that was one of my descriptions in the video my girlfriend took). It took a good two week after the steroid and going on another hard core diet of low starch, no sugar, no booze etc etc but I finally started to feel a little more normal and managed a very gentle surf within 3 weeks or having the steroid.
During this time and looking at my diet again, my Mum sent me this book by Carol Sinclair called The IBS Low-Starch Diet. It was really interesting as this is someone who didn't realise she had Ankylosing Spondylitis, she started her diet to try and treat her IBS, which can often be a part of AS and vice versa.
It was really interesting to read this book because last time when I went on this special diet I was still eating lots of green vegetables like Broccoli and Cauliflower and Brussel Sprouts etc but I didn't realise how high the starch content was in these. There are some things in her book that I do not agree with, things like you can carry on eating sugar and drinking alcohol and tea and coffee. But I do feel reducing your starch content dramatically helps with the AS.
But what I have realised this time round and most importantly is that everyone is different and will respond to things differently. There are lots of things out there that will help and it's a case of arming yourself with as much information as possible and listening to your body as (I know this will sound massively hippy) ultimately you are in tune with what is good for you, but we have just gotten out of feeling it and knowing and trusting it.
Anyway, thats it for a bit. I'm fully on the road to recovery, but every time I feel myself slipping a little bit I'm going to watch those videos of me trying to walk 3 meters to get to the toilet or in bed blubbing about how much the pain hurts and what it feels like.The best feeling is feeling like you are in control of it, and that is the situation I feel now. It is a shame that I had to have a steroid shot again but hopefully as I understand it more and more I can get rid of the medication completely.
One last thing I forgot to mention is that I was having regular acupuncture after the steroid shot which has also been incredible. It has really made me more aware of how I am holding my body in certain positions, but maybe I will talk about this in another post as I've lost my flow. Anyway, the acupuncture at the Dolphin Clinic in Brighton has been very helpful in getting things under control again.