Over the last few months I have been writing again. or working on my new book to be precise. I have written about my early journey into Central Pain Syndrome to raise awareness and help caregivers and fellow sufferers a better understanding of this bizzare and rare disease.
Here is the introduction as a taster of my new book. It’s a way off publication yet as writing and publishing a book is a lenghly process (I am crrently on my second re-write). I hope this spikes your interest. Its a 3-minute read.
I’m Si, a husband and father to four daughters, three of which look uncannily alike and were born two minutes apart (yes Triplets). I am no pain expert in the medical sense, but as far as living on fire goes, I have first-hand experience. And I wouldn’t wish it on anyone.
I was diagnosed with Diffuse Central Pain Syndrome in July 2019. It’s a rare neurological disorder affecting the pain pathways in the central nervous system. I got diagnosed almost a year to the day the pain began permanently, following a whiplash injury when I was hit in my stationary car by a man in a van who didn’t stop until the last minute.
So, now, as a writer, I believe I can do something pro-active in raising awareness by sharing my story of the early days of living with the monster that is CPS.
This is my second book, which in a way follows straight on from my last one ‘From triples to triplets’, a book about my experience with becoming a dad from a destructive past, and ironically in dealing with the stress of early parenthood. The reason I say this book tails on from my other publication is because the car accident happened around at the time of the editing process. It made it increasingly difficult to focus on a single task. And with the added medications I had started on, and the distracting pain, I wasn’t even sure if the last book would get finished! So, although the subject matter is quite different here, the two books are linked by the experience of pain. Agonising, electrocuting, aggressive, relentless and permanent pain.
This book details my early journey into a diagnosis, through to pain management, daily living and sharing what has worked for me in dealing with this rare disease. I say I’m no expert, because even now I am driven to the edges of insanity with it, only unlike when It first began, I no longer bother going to hospital with it. Because for me there is nothing visibly wrong that the doctors can see, and nothing that can be given for Central Pain Syndrome other than anti-convulsant medication, which take a long time to start working, sometimes months.
I take epilepsy medications that slow down the nerve signals to the brain. These work (To an extent) because the problem lies in the pain signals being sent to the brain, signals that are malfunctioning and telling my brain I’m being hurt – badly, and the brain responds with pain, like a warning sign. So even though the problem isn’t in my head – it is, and also in my spinal column and brain stem. In short my central nervous system has turned on me. It creates pain for no reason other than it senses false threats. Standard pain relief doesn’t work. Which sucks for me!!
If you want a book explaining the ins-and-outs of the technical and medical details of CPS, or at least what little there is out there, and known about this disease, my advice would be ask Google. There are some great articles and books written, but still a world of misunderstanding and theory around it.
Instead I decided to do what I do best and share my personal journey with it in book form, as I did with new fatherhood previously, in the hope that it may benefit other sufferers, perhaps such as yourself or for caregivers who are at a loss in understanding this illness, after all it is life changing for everyone involved, as my wife Stacey would tell you.
As I said; and it’s worth repeating, I’m no medical expert, and have had to become my own advocate with CPS in a many ways, but when it comes to being electrocuted in the face for no reason other than my nervous system is malfunctioning, I can explain it in personal detail like the most learned of professional’s. In that sense I am an expert at having chronic pain. I’m in the trenches with it daily!
This is also a very personal book, so it gets gritty and dark at times. To understand CPS without understanding the effect stress has on the pain levels would be to not understand it at all. Internal conflicts from traumatic events, past and present can impact the way the central nervous systems functions. It is why above all else, mental management is crucial in dealing with the pain on a daily basis.
As far as I understand, CPS is a permanent condition. Once the central nervous system is damaged, and begins taking on a life of its own, whether from physical damage or emotional trauma, there seems no going back. As I was told by long time sufferers, if anything – the pain evolves, and it’s up to us to get better at managing it. And we do, because we have no choice, we toughen up out of necessity.
I don’t offer a cure in this book; I wish I did! However, I do contribute to Non contemplative meditation as my number one defence in dealing with then secondary pain. There will be a link to the free exercise in the back of this book. By secondary pain I mean the emotional strain, fears and frustrations CPS brings with it. To which there is an almost infinite list.
I share what has helped me, from my time working with the pain clinic, to psychology and dealing with past traumas. And how untangling the past has helped me deal with the present. Because reduced stress means reduced pain. And that’s about the best deal I can currently get, or at least until a cure comes along. Which it may do yet. There are organisations such as the ‘Central Pain Syndrome foundation’ who are working to better understand and help the sufferer. These organisations are vital in helping people like me on my journey.
So, if you are suffering from chronic nerve pain, and feel you are alone, know that you are not the only one. And there are others out there, in pain management programs and on online forums who are waiting to share of themselves and offer advice and support. We are, after all a segment of society that have become warriors in battling everyday life. Most people will never understand or experience the levels of pain we live with from day to day.
So, make yourself a cuppa, and I will take you on the journey of my first couple of years with diffuse CPS. And hopefully you will find something that resonates within these pages, and perhaps can become of use to you or another, who may be struggling to understand the monster.
My other book ‘From triples to triplets’, is available now through Amazon.