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Tristan, someone living with Complex Regional Pain Syndrome (CRPS) – after receiving support from the Burning Nights CRPS Support counselling service – fundraises so that others can benefit from the service the same way he did.
He explains: “...it’s an extremely lonely place trying to navigate the world with an illness that nobody knows about.” When he stumbled across Burning Nights, while researching help for the condition, he described feeling accepted and validated around the pain he was experiencing.
With the help of Burning Nights, I don’t feel so alone anymore.
Tristan first fundraised for Burning Nights at his children's school by setting up a stall, selling handmade bracelets he’d made while in the hospital. Crafting these in an effort to keep his dexterity and his mind occupied but believed his bracelets could be put to good use. They also gave him an opportunity to show his children how CRPS affected him in a way they could understand.
That’s not all. In 2023, trained everyday, for a minimum of 10 miles, in the Peterborough half-marathon from his wheelchair.
Many people were shocked to see how I had deteriorated after being diagnosed, but when I did the half-marathon people got to see that some form of recovery is possible even though there is no cure – we still fight on and enjoy our days.
Carrying out a fundraiser in Tesco, Tristan was very thankful for the literature and leaflets Burning Nights sent out to support his fundraising efforts, especially as many who donated were so curious about the condition.
One lesson Tristan has learned from his fundraising activities is that pacing himself is key, although this can be difficult to do when living with CRPS.
When asked what he hoped would be accomplished with the funds he had raised, Tristan was tearful: “I don’t want anyone to be in the position I was in, to feel so alone – with nowhere to turn – I want them to know Burning Nights is there, so if my fundraising can just accomplish more awareness.”
Tristan is currently a wheelchair user but does not see this as a negative, and he is happy he has the independence to get out and about. But Tristan does aim to one day walk again. He’s working hard to rebuild his strength and desensitise his pain, saying “hopefully one day I will return to work and walk my daughters down the aisle - just the little things people take for granted”.
Tristan has hopes of training and participating in another half-marathon or marathon, in his wheelchair, in aid of Burning Nights CRPS Support.
Burning Nights CRPS Support thanks Tristan and his supporters for their generosity and kindness in raising vital funds to help us to continue our work.
If you or someone you know wishes to make a huge difference to the lives of those impacted by CRPS by raising funds and awareness, check out our fundraising ideas page.
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