I waited over 10 years for my diagnosis. I started with severe low back pain in my early twenties and was told it was a hazard of my profession, nursing! When I had my first baby the sacroiliitis was so debilitating I had to use walking sticks and yet again, told it was due to the pregnancy hormones.
Once my baby was born I found the sacroiliitis was constant and I had also developed severe rib pain. Gone were the days of sleeping on my front. No more could I cope with a hug from my loved ones. In addition I had tender areas over many of my joints. I went on to have a further 3 children and each time I was crippled with low back and hip pain. Years passed with periods of severe pain.
I was finally referred to a rheumatologist in my mid thirties and given my AS diagnosis but was told there was nothing that could be done for me!
I felt utter despair but I was not going to accept this as a fait accompli. Of my own volition I decided to exercise like mad and spent many years crashing and burning. I was unable to manage my disease at this stage.
A further 10 years after diagnosis, as I live in Bath, I was referred to The Royal National Hospital for Rheumatic Diseases under the care of Dr Raj Sengupta. At last some real help! The RNHRD run a specialist AS rehabilitation course. The aim of this course is to promote self-management and provide patients with the resources to optimise their health and it was on this course I learnt the benefits of exercise for AS sufferers. With the advances in treatment and knowledge there is now more hope for AS sufferers.
I know how hard it is to remain motivated when just getting out of bed is difficult! I knew one of the keys to helping myself was to choose a form of exercise that did not exacerbate the condition; running was out of the question! I remembered from the AS course that being in the water embodied what I was looking for when exercising.
I set myself a challenge, ‘The Great London Swim', to attempt to swim one mile in open water! A formidable challenge. To ensure that I would not be defeated I enrolled my four children to support me. There was definitely no going back on the challenge as we decided to raise money for NASS and informed all our family and friends.
We ended up raising over £1800 and I was amazed how much the swim training helped my AS.
It was difficult at first as any exercise is, but I paced myself. Yes it did hurt but I slowly increased the distance each week until I was swimming a mile 2 to 4 times a week. I really started to feel the benefits fairly quickly. My pain improved, I slept much better, which helped improve the fatigue. My flexibility improved and I had a feeling of wellbeing and mental tranquility. My muscle tone improved and I had more stability around my pelvis.
The good thing about swimming is the variety of strokes, so if one stroke is uncomfortable there are others to choose from. However, the more I swam the more flexible I became. I found that the breaststroke was best for me and with good technique it didn't cause me neck problems. Front crawl involves kicking from the hip, which I personally found difficult but not impossible. The backstroke, the least intensive of the strokes was excellent for relieving pressure on my spine and neck when I needed a break.
After each swim, before exiting the pool, I would stretch and a hot shower to finish was my reward.
My advice to those who do not have good stroke technique is to invest in swimming lessons. A good body position will help prevent neck pain. Breathing is often a big stumbling block for many, so lessons will help with this too. Once you perfect breathing and stroke technique your swim will be much more pleasurable. Treat yourself and invest in some good gear, goggles, nose plugs, hat and costume. You can even purchase a waterproof MP3 player to break the boredom, or just talk to yourself as I do.
I cannot express strongly enough the benefits of swimming to help your AS. I know how hard it is some days to do anything when the pain is bad but on those days when I forced myself to get in the water I felt unbelievably better and for that reason I am still swimming.
Visit our Swimming with AS pages for more information on how taking the plunge can help your AS.
And the Hockens are doing it all over again! They will be taking on the Great London Swim on Saturday 18 July 2015 and you can sponsor them here: https://www.justgiving.com/Poppy-Hocken2/