Mark’s Pilgrimage
“I have come across people who are thriving, struggling, and somewhere in-between. I have been in all three camps since having been diagnosed. I know what it’s like to feel desperate, vulnerable, lost (and worse) because of this condition.”
After first experiencing back pain at just the age of 14, Mark was finally diagnosed with axial SpA at 23 – by which time he was in agony and experiencing severe uveitis. A NASS member for 5 years, he is taking the 387 mile pilgrimage from Lausanne, Switzerland, to Rome, all to raise vital funds and awareness of axial SpA.
Here’s his story.
It feels like a long time ago.
Who knows when it started.
By the time I was fifteen, I had reactive arthritis in my knee and wrist, but I remember having random back pains from as early as fourteen years old. At university it started to really take hold, gradually building before flaring up just before my 21st birthday. From then on it was a daily battle; sometimes winning and sometimes losing. By 23, I was in agony, misdiagnosed and suffering from severe uveitis. I felt very lost. I was diagnosed with axial SpA not too long afterwards. I know of others who have had to wait much longer, but it really should not have taken as long as it did.
I have now been a part of NASS for five years, and I have seen the charity change and grow rapidly in that time. I have come across people who are thriving, struggling, and somewhere in-between. I have been in all three camps since having been diagnosed. I know what it’s like to feel desperate, vulnerable, lost (and worse) because of this condition. NASS is there to fight our corner so that one day no one goes through what I and others have had to suffer.
I love Italy. I hear of many people travelling the Camino del Santiago in Spain, so I thought I would look up a pilgrimage route in Italy. I plan to travel it in three parts, covering 387 miles in just over five weeks. I start in Lausanne, Switzerland, and end in Rome.
What are your favourite ways to stay active / fundraise?
I got into hiking last year – even after climbing Scafell Pike and claiming that I would never climb a mountain again, I attempted Snowdon a few months later (and failed) and climbed Ben Nevis in April. Maybe I have a problem?
I am also fortunate enough to be playing cricket again at local club. I never thought that I would enjoy it and now I cannot stop! I also go to the gym twice a week, or whenever I feel like I can. Keeping active helps me mentally and aids dealing with flare-ups. I would love to start swimming again, but time only allows so much!
What are the benefits this has had on your physical and mental health?
Pain is a lot easier to deal with when I know I have done something. There is a limit, of course, but through trial and error I am starting to learn my level of pain tolerance. Knowing that I can do still do things when I am pain has made me less stressed and more confident. I no longer feel the need to fight when I do not need to. I am more outgoing.
How have you managed your symptoms?
Ice, exercise, tears. It is all part of the process. Epsom salts work surprisingly well. I recently suffered from a flare of uveitis, so I took myself straight to the Oxford eye hospital as soon as my vision went blurry. Steroid eye drops and an injection have sorted it, and I have recovered, thankfully. Talk to a physio, GP, whatever you need. Heat is good for stiffness; cold is good for pain. The challenge is getting close now, so if you have any tips, please do get in touch to share them!
Any top tips for others wanting to take on a challenge for NASS?
Build up your training gradually. Strength is just as important as stamina, if not more. But most importantly, do not give up. It will hurt, there will be downs, but you will never know how much you can do unless you try. If you would like to join me for some of it, please get in touch!
Any top tips for encouraging people to donate (if applicable)
Please donate via https://www.justgiving.com/team/teammarktelkman
Thank you, Mark, for sharing your story and for choosing to support NASS.