When one becomes ill at 40 one doesn’t expect to have to give up one’s work & business, home & savings and to be seriously & debilitating disabled for the best part of the following two decades.
Despite being in so much pain that I’ve had to pull myself along the floor, wished daily for death and at very least to have my worst affected leg amputated, in the UK health system one doesn’t expect to be refused referrals, denied a medical diagnosis for almost 10 years, called a drama queen, a liar, an actress, and attention seeking by medical professionals.
And once one has a diagnosis, can apply for benefits (let’s not linger on DWP accusations of having ‘chosen a disability lifestyle’), one doesn’t then expect to be made very much MORE sick from the side effects to the ‘drug of choice’.
CRPS is a strange & little understood condition. It seems few GPs recognise the condition, let alone acknowledge that sufferers need urgent help if they are to recover full function.
CRPS affects more women than men, upper limbs more frequently than lower and can be caused as a result of trauma, accident, post stroke or cardiac incident, or for no identified reason whatsoever.
The syndrome is diagnosed by a combination of symptoms generally linked to increased sensitivity, swelling, change of colour or temperature in a single limb, but, and this would seem to be unique to CRPS, the symptoms are frequently adopted by the previously unaffected limb as well.
Unable to mobilise and sometimes using food to distract and distance the sufferer from such extreme pain, CRPS sufferers can be overweight. I’d been on the waiting list for assessment by the local NHS bariatric team for several years. My parents died and I was able to pay privately for a gastric sleeve operation.
In the following 12 months I’ve lost some 10 stones in weight. But I haven’t just lost weight, I also lost drug half-life, the remains my body had dealt with by burying it deep within my body fat. So when I lost weight I also lost the drug to which I was allergic.
The many side effects caused by this drug, Gabapentin, gradually disappeared. I no longer suffer from fibromyalgia or peripheral neuropathy, from falls associated with probable transient ischemic attacks, or hugely oedematous legs and the trauma ulcers they caused. Even my hypothyroidism has reduced alongside my body weight. I no longer use a wheelchair and my mobility scooter is needed only for lengthy outings. All excellent and most surprising results!
In total I’ve lost more than 50 different side effects while the only downside to the operation has been the development of lactose intolerance. Though it takes a bit of getting used to, a dairy-free life is a small price to pay for so much more mobility & freedom.
So now, at 60, I have a future. Only I have no idea what that future might be. I still have CRPS and remain hypothyroid but after 20 years of being restricted to my sheltered home, realising a future is what my trip to Thailand is all about. Despite having been a nurse, a radio broadcaster and running my own small business, in recent years I’ve lived a very small life and consequently have near zero confidence.
The counsellors in Thailand, thelifechangepeople.com, are well regarded and highly recommended. They offer courses for women who are seeking to make significant changes to their lives. I believe they’ll help me to find the person I can now be and assist me to discover what I want from the rest of my life. I’m looking forward to being all I can be for my future!
Having spent the past couple of decades living one day at a time, a few months ago I looked back and discovered that almost 20 years had passed. It was an immense shock. So much lost time – time I don’t remember too much about as Gabapentin also affected my memory which hasn’t, so far, been restored. I’m hoping counselling may help recover some of my memories too. So for many reasons this trip could be the most exciting journey of my life!