Lately
I've been feeling strange especially when off my ventilator. I've had
headaches, breathing difficulties and my heart rate has felt fast,
registering 88 on my personal pulse oximeter the other day. I've felt
rotten but after all the tests everything appears normal, ECHO scan
normal, ECG normal, lung function normal and blood gasses normal. So
what gives? Am I a psychosomatic malingerer, imagining these health
issues with my brain causing observable symptoms? I hate the
disconnect between how I feel and how tests say I am. I feel
bizarrely like a fraud because have I been imagining it? I don't
think so but I can't even be sure I can trust my own mind any more.
I'm having more tests done and that has included a blood test. Only
time will tell on that one.
This may
sound strange but living with a life threatening disease makes me
prepare for death every time I feel unwell. Have I done enough
Spiritually? Have I sent the right messages to my friends? Have I
done right by my family? Will dying hurt and how will my family cope
after I'm gone? With Duchenne's you're constantly looking down the
barrel, with a stalker following you everywhere. I'm tired of this
merry-go-round of preparation and anticlimax as I keep living with
this uncertainty. Life is precious don't misunderstand me, but prison
weighs heavily on me. I long for true freedom from this bodily
prison, I've done as much time as a bank robber yet I have not
committed any crime. Don't get me wrong I am sinner who is often
wrong just not in the instance of being born with DMD.
The
expectation of positivity weighs incredibly heavily on many with
these sorts of illnesses including myself. Anything other than guts
and determination can often be met with criticism and a pull yourself
together attitude. I have enormous hope for an awesome future after
death, that keeps me going and how my parents brought me up also
gives me positivity. But, I'm human and have the ability to
experience negative feelings and sharing them isn't wrong. It doesn't
make one a miserable give up merchant. We/I need to let them out, let
tears flow and release all the tension that builds up within.
More on a range of subjects can be found out in my book;
More on a range of subjects can be found out in my book;
EBOOK available here; https://www.smashwords.com/books/view/69702
Available on Amazon USA here; http://www.amazon.com/DMD-Life-Art-Ian-Griffiths/dp/1907652337/ref=sr_1_1?ie=UTF8&s=books&qid=1288120811&sr=8-1
Available on Amazon UK here; http://www.amazon.co.uk/DMD-LIFE-ART-AND-ME/dp/1907652337/ref=sr_1_1?ie=UTF8&s=books&qid=1288105302&sr=8-1
My new Ebook Poetic Diversions available to buy here; https://www.smashwords.com/books/view/206857
All links available in my website here; http://duchennemen.net16.net/buymybook.html
My art can be viewed here; http://www.redbubble.com/people/thebigg2005
Foreword
I’m Ian Griffiths from South Wales. This book is a story of my life so far up to the age of twenty five years. I live with and suffer from the ill effects of DMD which stands for Duchenne Muscular Dystrophy. It is a severe muscle wasting disease and a life limiting terminal illness. It won’t kill you in six months in the traditional sense of ‘terminal’, but it’s far crueller than that, it steals every muscle in your body first and then kills you, anywhere up to the age of thirty. There have been cases of men living past that into their forties and fifties but only with drastic interventions such as ventilators and tracheotomies, more on this can be found by reading on.
I hope to cover a few things in this book, from a history of my childhood years to a more detailed history from sixteen years onwards and finally onto my current problems and triumphs. At times things I write may make you smile or may make you pause and think about the seriousness of life with this devastating disease. I really hope there will be a cure but currently for us supposedly ‘older’ guys with DMD (over twenty one), there seems very little hope. If I don’t see a cure in my lifetime, I hope my campaigning helps in some way bring it about for future generations, so another child won’t have to see their body wither and die before their time
Available on Amazon USA here; http://www.amazon.com/DMD-Life-Art-Ian-Griffiths/dp/1907652337/ref=sr_1_1?ie=UTF8&s=books&qid=1288120811&sr=8-1
Available on Amazon UK here; http://www.amazon.co.uk/DMD-LIFE-ART-AND-ME/dp/1907652337/ref=sr_1_1?ie=UTF8&s=books&qid=1288105302&sr=8-1
My new Ebook Poetic Diversions available to buy here; https://www.smashwords.com/books/view/206857
All links available in my website here; http://duchennemen.net16.net/buymybook.html
My art can be viewed here; http://www.redbubble.com/people/thebigg2005
Foreword
I’m Ian Griffiths from South Wales. This book is a story of my life so far up to the age of twenty five years. I live with and suffer from the ill effects of DMD which stands for Duchenne Muscular Dystrophy. It is a severe muscle wasting disease and a life limiting terminal illness. It won’t kill you in six months in the traditional sense of ‘terminal’, but it’s far crueller than that, it steals every muscle in your body first and then kills you, anywhere up to the age of thirty. There have been cases of men living past that into their forties and fifties but only with drastic interventions such as ventilators and tracheotomies, more on this can be found by reading on.
I hope to cover a few things in this book, from a history of my childhood years to a more detailed history from sixteen years onwards and finally onto my current problems and triumphs. At times things I write may make you smile or may make you pause and think about the seriousness of life with this devastating disease. I really hope there will be a cure but currently for us supposedly ‘older’ guys with DMD (over twenty one), there seems very little hope. If I don’t see a cure in my lifetime, I hope my campaigning helps in some way bring it about for future generations, so another child won’t have to see their body wither and die before their time
