Arthritis and me
Hi,
my name is James Pritchard, I am 47 and I currently live with a condition called Ankylosing Spondylitis (AS).
AS is a form of Arthritis, but unlike normal arthritis there is no swelling of the or pain in the hands. My form of Arthritis affects the lower portion of my spine and causes the bones to fuse together, which in later life lead to a hunched posture and an inability to stand up straight.
Both men and women can be affected, but I have been told it is far more common in men than women. I first found something was wrong when, after running my first marathon in London, I began to have issues with my lower back, a visit to my GP was put down to over training, I kept returning to my over the next 2 years for test after test and after nearly 30 months, I sought the help of a private Dr and at the fist appointment asked me if I knew I had AS. A simple blood test and Xray confirmed what the NHS had failed to do for so long.
One of the reasons for the long delay with the NHS, the blood test is quiet expensive and often returns a false negative. I talk about pain in the lighter sense these days, but back in 2002 the pain was unbearable and the only way to manage this ironically was through exercise and even more ironically, my age group and amount of exercise I was doing which potentially triggered my condition.
From 2003 to 2017 my life was a contact bombardment of hospital visits and drugs, I was started on a pain medication called Diclofenan which was slowly increased until my body became used to it, max strength Ibuprofen, until finally hitting the max strength of Naproxen, Co-codamol and Amitriptyline. During this time I was often exceeding the maximum amount of medications allowed.
Finally after many hoops, I was commenced on Biologics, which shut down my immune system and I self administer these every 2 weeks, this medication has changed my life for the better, but comes with the added effects of making me vulnerable to everyday illnesses and more recently COIV19.
How has this affected you?
The constant years of living in such terrible pain and medications ultimately affected my mental health and took me to some very dark places. Another horrible side effect is something term ‘meth mouth’ which has caused my teeth to rot away.
Having run marathons and 10ks the spread of pain through my body became to much and for many years I was pretty much bed ridden, unable to move and barely walk. My Rheumatologist rammed it home that I needed to get out, the very thing that caused this, was the one thing that could ultimately help me manage the illness and pain, I started the long road along pain management, but this has resulted in me being able to run a marathon in 2011 with my other half.
How do you manage your illness?
In the early days, management for me was about taking multiple pills I wasn’t given any real ‘management’ it was basically ‘you have this life crippling disease, deal with it’ At its height, I was taking 79 pills a day, often most of these were to counteract the other more powerful medication I was taking.
My actual management of the pain didn’t come around for many years when I stopped trying to deal with the effects of what is an irreversible illness and changed my mental outlook, a kind of Ah Ha moment for me, I knew when I went to bed I would wake up the next day and still have this disease and still be in pai, but I had to hit a mental rick bottom to help me see that I could move on with my life.
Although exercise was the key, it hurt to exercise, I slowly began jogging and working through the discomfort to get my joints moving and fall in love once again with running, I was again running 10k races, it was slow but I was still pout running again, I also learned to process my woes internally and build up and mental resistance to pain.
Along with the running, I also take part in Peloton cycling and chair yoga to maintain some degree of flexibility, I love close to work so get to walk on a daily basis, the cycling and walking provide very low impact activity for my joints. Each day I make it a target to find some form of exercise and despite working full time, I manage to get in around 20 odd miles per week.
How does you illness affect your body.
Oddly, my Arthritis affects me very little with my running, I only ever notice when other runners, being polite, ask me if I’m ok. For many years I let my illness dictate my life, I joined a group on Facebook in 2008 with the aim to motivate me to run 1000 miles, by this point I had built up my mental defenses, I was still plague with doubts and negative thoughts around what I could achieve so in 2009, I woke up and changed that thought. I pushed myself to run as far as I could before my body screamed at me to stop, I wanted to challenge my own thoughts on what I could do. My father offered advice and comfort of not achieving the 1000 miles in the fist attempt, but in 2009 I ran 1,329miles, in 2020 I ran 1,900 miles and in 2021 I ran over 2,100. Basically within 3 years, I had run twice as far as the groups aim, showing to myself and the world what I could do.
I am never going to be a podium place finishers, but by setting goals such as knocking a few seconds off a run, or adding in an extra 5k I feel that I am achieving. I have learned to set my pace around 1 mile in and keep at that, but I have the attitude of ‘Today I am going to do………’ and I will.
I am more determined to enjoy what I do, I do not see this as a hindrance, but have found that it seems to affect other people more than me, purely by my physical appearance, as my posture isn’t the typical runners posture. This is what I call the ‘subconscious discrimination’ with comments such as ‘your a runner?’ I’m proud of you, your an inspiration’ and then I start the race and run the way I do, but this is their problem, not mine.
Is your current activity the same as pre diagnosis.
I do far more running now than I ever did, I’ve added in cycling and walking, through the constant lockdowns I have become more focused on Marathons and half marathons, I would love to run an ultra marathon but know that currently the prospect of running 30+ miles would be to much for me, but this is something to aim for the future.
Any advice.
When I got back into running, I checked in with my Rheumatologist every step of the way, firstly, what ever you are dealing with, check in with your GP, get advice and take this into consideration.
Make sure you go at your own pace and no one else’s, just do what you feel comfortable doing and don’t force anything.
Find a supportive Facebook group, I say supportive, as some of the more specialist groups dealing with my diagnosis can be quite negative, for every one person that has overcome their issues, their is 100 more that are stuck in a negative headspace, as the saying goes misery loves company
Don’t let anyone tell you what you can’t do, My view is get out there, have a go, have a try. If you crash and burn and fail, then try again until you get it right. Things can always be tweaked, try something different, a persons success is preceded by a lot of failures.
It is your life after all and not theirs, so don’t let others fears inhibit your true self, find a way to succeed in what you want to do.
Be open minded, have a try.
