I want to share a story published this week in the British press and the email that I have sent on behalf of everyone suffering with chronic pain.
Dear Daily Mail,
Thank you for sharing the story of Hannah Moore, the young lady who has chosen to have an amputation to help relieve her chronic regional pain syndrome(CRPS). I know that the majority of people will be unable to understand why she would choose such a drastic route, but those of us living with constant intractable pain will understand the lengths that one will go to for any relief.
I have lived with chronic pain for many years now and have undergone various major back surgeries in an attempt to give me some relief. My first operation, aged 21, followed me taking my nursing finals lying on a mattress! Nursing at a time when we still “lifted” patients, combined with a genetic disorder of the collagen, undoubtedly marked me out for back & joint problems! Following two failed back fusions in more recent years, last year I had a spinal cord stimulator implanted at St Thomas’ & Guys hospital in London and whilst this gives me some relief when it is switched on, it is not a cure..
The nerve damage in my back is permanent, as is the genetic condition (Ehlers Danlos Syndrome) causing faulty connective tissue to allow recurrent joint dislocations, circulation problems and more. So….there is no cure, currently, for my pain. I remember clearly the look of shock on a friend’s face when I said that I would happily swap my poor mobility for a permanent wheelchair IF it meant that I was pain free. I would imagine that this brave young lady has come up against similar reactions.
Ironically I have recently acquired a wheelchair in order to give myself & family so more freedom, but I still do have constant pain which fluctuates in severity dependant upon the weather, my activity or for no reason at all.
I hope that with more recognition of chronic pain conditions, such as CRPS, that there may be some more understanding for this debilitating invisible illness.
A recent film has been made detailing life with CRPS “Trial by Fire” https://en-gb.facebook.com/trialbyfiremovie/
Link for the original story about 19 year old Hannah Moore – don’t be put off by the “sensational” headline