In July 2016, Irene Bove and her friends Anna and Kathryn, will take part in the Mongol Rally, an epic adventure over deserts and mountaints, to raise money for NASS and awareness of AS.
Below, Irene explains a little more about her challenge, and her friend Jonny, who lives with AS, shares his story about his experiences
'Team Katalastrophe is a group of friends from Bristol going on an epic adventure, raising money for NASS.
The Mongol Rally thunders 10,000 miles across the mountains, desert and steppe of Europe and Asia each summer. There's no backup, no support and no set route; just you, your fellow adventurists and a tiny car you bought from a scrapyad for £11.50. If nothing goes wrong, everything has gone wrong. Screw tarmac, ABS and gadgets that help you find your navel. The Mongol Rally is about getting lost, using your long-neglected wits, raising shedloads of cash for charity and scraping into the finish line with your vehicle in tatters and a wild grin smeared across your grubby face.
Katalastrophe are departing on 16 July 2016, and the rally is expected to take six weeks. We are taking part to raise money for the National Ankylosing Spondylitis Society (NASS). The charity has been chosen as our close friend Jonny suffers from the condition, and we have seen first-hand the troubles of the disease and the necessity for the valuable support from a charity like NASS.
As with most people with AS, I went through years of back pain, hip pain, unexplained pain and as a result a string of misdiagnosis. It's a hard disease to pinpoint as it's usually around 10 years from the onset of symptoms before it is identified as AS.
Once the doctors had ruled out the pain was not being cased by my scoliosis, a partially slipped disc or a variety of other associated complaints, I was asked a question, the answer of which really defines inflammatory diseases from a standard bad back: Is the pain worse in the morning? Yes! AS traps you in a claustrophobic world where you're in pain and fatigued, but rest and immobility aggravates the symptoms, yet movement starts to relieve the symptoms. But because you're tired, you just want to rest, but can't! I describe being still in bed or on the sofa trying to get comfortable (I think I remember what comfy feels like!) as a 15 minute window of joy before you start to feel like you're being vacuum-packed and must move before you completely lock up. As a professional musician, I spend long hours in cars, planes and buses travelling to the next gig, trying to find a way to keep the symptoms at bay, only to arrive at the venue and try to remember I'm playing jazz trumpet here, not trying to offer a live yoga class to the audience! It can become so difficult to stand or sit still for anything longer than a few minutes. Occasionally I'll sneak off stage between songs and stretch my back over a chair, just to loosen up enough to get through the show. But the show must go on, and life must go on...
Despite there being no cure for AS, I am about to start on anti-TNF medication, a self-administered injection that helps reduce inflammation in the body. With this, coupled with my exercises and physiotherapy, a better quality of life is surely around the corner. And to help anyone suffering from AS through this path, there is the wonderful work of NASS. They have offered me so much support and advice on treatment, exercises, information on the latest research in the field of rheumatic and autoimmune disease, as well as provide excellent telephone support and advice and a fantastic online member's forums, so you don't feel like you're going it alone.
Please help Team Katalastrophe raise as much money as possible for this incredible charity. Show your support and donate today!'
Team Katalastrophe will be putting on a fundraising gig at the Under the Stars bar in Bristol on Thursday 12 November. We hope as many of you can join them as possible!