Any regular readers are well aware that I’ve been in relapse for the past 10 months with RSDS (Reflex Sympathetic Dystrophy Syndrome). I’m not generally one to dwell, I just become frustrated with my limitations – mostly attributed to my lack of sleep via my pain levels.
One evening last October, feeling rather sorry for myself I started browsing through RSD support groups online. I’m a member of various networks and came across a conversation about people who inspire others despite this pain.
I read in messages about a girl called Nicole Hemmenway from San Francisco, who after a long battle with RSD in her teens and early twenties was now a motivational speaker, an advocate for patient rights and a marathon runner!
After looking through Nicole’s website (http://www.nicolehemmenway.com) I found that she had written a book detailing her journey to recovery called “No, It’s NOT in my head." I e-mailed Nicole herself and we chatted briefly about each other’s experiences. Two weeks later her book arrived on my doorstep with a note inside saying...
Lynsey – Thank you for being a strong empowering voice to others living with pain. Continue to live life while holding onto hope. Always believe in the unimaginable and how you are an inspiration. Believe in miracles, Nicole. – A lovely message I thought!
Although knowing there could be an end to my own RSD I put off reading the book, I think I knew reading Nicole’s story would ignite old and purposely forgotten memories.
I took the book to Australia and began reading it in my second week there, after looking at it several times, flicking through the chapter titles – putting it off a little longer each time.
One morning I sat out in the sun, feeling its warm benefits and began to read what almost felt like my own story.
The book documents how Nicole developed the condition (would you believe a miss judged high five gone wrong!) which would leave her unable to use either of her hands, forcing her to leaving school, try and then withdraw from University.
I found myself reading with tears constantly stinging the back of my eyes, things only made easier by the fact that every couple of chapters she wrote about her thoughts during her first marathon – realistic yet positive, worrying yet reassuring.
Like myself Ms Hemmenway had been accused of faking her symptoms, that it was all in her head and that she was causing all of this drama to get attention – whether it good or bad! And my own story reflected all the mishaps, medical wrong doings and metaphorical doors slammed in her face.
I’m aware that there are some people who would indeed fake illness and crave attention, but why would Nicole? - A young, gorgeous, confident, A+ student who loved sport, and spent her free time attending football games and formal dances.
Tired with conventional medical treatments and medications Nicole started to explore alternative therapies like Reiki, meditation, colour and crystal therapy, yoga classes and many more. This has now made me wonder should I do the same? I gave up on the NHS curing me when I was 18, after seeing a doctor who suggested with complete seriousness that I should consider having my leg amputated. Since then I’ve just continued with daily physiotherapy, pain killers and muscle relaxants and luckily a very good relationship with my GP.
Apart from being horrified at the thought of amputation I wanted to be rid of appointments, tests and brainstorming sessions in my pain therapy clinic – I wanted a life. To an extent I have achieved a fair amount in the years since, but had I tried alternative therapies would I have done more?
So while I contemplate new therapies and treatments I would definitely recommend Nicole’s book. It’s a harrowing story that leaves you wondering who hands out these doctors qualifications and approves these practices of treatment. But over all seeing a frank and honest journey that has led Nicola to a healthy almost pain free life can only be an inspiration to anyone!
L x
One evening last October, feeling rather sorry for myself I started browsing through RSD support groups online. I’m a member of various networks and came across a conversation about people who inspire others despite this pain.
I read in messages about a girl called Nicole Hemmenway from San Francisco, who after a long battle with RSD in her teens and early twenties was now a motivational speaker, an advocate for patient rights and a marathon runner!
After looking through Nicole’s website (http://www.nicolehemmenway.com) I found that she had written a book detailing her journey to recovery called “No, It’s NOT in my head." I e-mailed Nicole herself and we chatted briefly about each other’s experiences. Two weeks later her book arrived on my doorstep with a note inside saying...
Lynsey – Thank you for being a strong empowering voice to others living with pain. Continue to live life while holding onto hope. Always believe in the unimaginable and how you are an inspiration. Believe in miracles, Nicole. – A lovely message I thought!
Although knowing there could be an end to my own RSD I put off reading the book, I think I knew reading Nicole’s story would ignite old and purposely forgotten memories.
I took the book to Australia and began reading it in my second week there, after looking at it several times, flicking through the chapter titles – putting it off a little longer each time.
One morning I sat out in the sun, feeling its warm benefits and began to read what almost felt like my own story.
The book documents how Nicole developed the condition (would you believe a miss judged high five gone wrong!) which would leave her unable to use either of her hands, forcing her to leaving school, try and then withdraw from University.
I found myself reading with tears constantly stinging the back of my eyes, things only made easier by the fact that every couple of chapters she wrote about her thoughts during her first marathon – realistic yet positive, worrying yet reassuring.
Like myself Ms Hemmenway had been accused of faking her symptoms, that it was all in her head and that she was causing all of this drama to get attention – whether it good or bad! And my own story reflected all the mishaps, medical wrong doings and metaphorical doors slammed in her face.
I’m aware that there are some people who would indeed fake illness and crave attention, but why would Nicole? - A young, gorgeous, confident, A+ student who loved sport, and spent her free time attending football games and formal dances.
Tired with conventional medical treatments and medications Nicole started to explore alternative therapies like Reiki, meditation, colour and crystal therapy, yoga classes and many more. This has now made me wonder should I do the same? I gave up on the NHS curing me when I was 18, after seeing a doctor who suggested with complete seriousness that I should consider having my leg amputated. Since then I’ve just continued with daily physiotherapy, pain killers and muscle relaxants and luckily a very good relationship with my GP.
Apart from being horrified at the thought of amputation I wanted to be rid of appointments, tests and brainstorming sessions in my pain therapy clinic – I wanted a life. To an extent I have achieved a fair amount in the years since, but had I tried alternative therapies would I have done more?
So while I contemplate new therapies and treatments I would definitely recommend Nicole’s book. It’s a harrowing story that leaves you wondering who hands out these doctors qualifications and approves these practices of treatment. But over all seeing a frank and honest journey that has led Nicola to a healthy almost pain free life can only be an inspiration to anyone!
L x
Don't forget, you still have that Raki token ;)
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