New book – a taster

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.

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Writing in the early hours

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.

Pain and management

I’m not the best at dealing with cps. But regardless of a cause, and what the outcome of my neuropsychological assessment may be. I have the responsibility to do what I can to self manage my condition

I did a seven week pain management program with my local pain clinic late last year. It was as informative as it was helpful in finding new ways to manage life with cps and chronic pain.

A good diet is beneficial to keep weight down and be kind to the body. It’s not new news, that eating healthy and doing whatever we can to keep a level of fitness is beneficial to managing stress levels.

The main thread of the group was reducing stress and external pressures in order to keep the pain dialed down. And to keep the central nervous system from going into wind up. For me music is a big help, and good as a temporary distraction.

Meditation is heavily suggested. With already having a practice, to which there is a link on the home page menu of thid blog, I can agree that it is forefront In dealing with the frustrations and fears of living with such a punishing illness.

The group was also beneficial in that I got to meet with other sufferers. It was good to have the opportunity to find out how others cope from day to day. Cps can be a very isolating condition, one that comes with misunderstanding, resentment and suspicion from others who themselves are struggling to adjust to our challenges and forced changes.

Community is everything in being able to manage cps. Online forums can bring comfort from simply having others to relate to. If you are given the opportunity to speak with a psychologist to unravel past traumas that may be affecting stress levels now I would highly recommend it. It can also lead to accessing other avenues of support.

Rest and relaxation are big defences in keeping the pain dialled down. Short breaks throughout the day can mean getting through the day with out flare-ups. The less our nervous system is being pushed the better. But also being careful not to do too little. Seizing up isn’t helpful. There needs to be a balance.

If you are struggling with chronic pain I’d love to hear what helps you. And I hope you can make a start accessing all the help and information you can find. Because at the end of the day, only we can find what works.

A Neuropsychological Assessment – update

Welcome all.

As you may be aware there is a new corner of my blog, dedicated to my journey with central pain syndrome. If it is home life with triplets you are interested in; or the link to the meditation you will find them both in the menu bar on my home page.

This post is an update at where I am in regard to getting a diagnosis for the cognitive, and memory problems i am experiencing. Thankfully it was just a one off test. Because it was a tough experience for me.

I was also told at the assessment that from the results, I wll be forwarded on to the right services. The results of my test would be matched against the results of typical males my age. They also took into consideration my past of alcoholism and lifestyle, previous mental health diagnosis and my educational history. It would all help to paint a picture for them to work with once the assessment was done.

The testing, as I was warned was draining. My concentration is not good at the best of times. So, to be asked continual questions, designed to be quite difficult that took all of my attention and focus was tough going. My brain almost went into melt down on more than one occasion.

On one of the tests i was told two short stories, then asked questions about each one. I struggled to remember most of what I was asked afterwards. And it got even worse when an hour later she asked me to again to relay parts the stories to her, to which my response was confusion, my mind went blank. I honestly couldn’t remember being told any stories at all.

It was frustrating and my mind was overloading, but I did my best to remain calm and conscious of my rising agitation and give the test my best. The whole process took around four hours, three of which were the cognitive and memory testing. I did get a five-minute break and used that time to meditate and remain as calm and switched on as possible.

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Life has to go on regardless

The original Doctor that Stacey and I spoke with, told me that the results would be ready by the 26th March, which is only a two week wait from now, she also said if need be she would refer me to the neurologist at the same hospital and would give me the results over the phone to save me travelling.

It was an important test which had to be done. It will take me a step closer to an answer. Because being in limbo with brain function issues has not been easy for any of us. I am as prepared for a diagnosis of MS, as i am for something more simple as brain function problems created by the pain.

But however this all turns out, I will always continue to do all I can to be a conscious loving parent. Because above it all I am a father, and rasising my family in a spirit of love is all that really matters.

Dialling up the pain

Uncertainty is a difficult thing to master. Fear always is when faith is tested. And with a chronic pain condition, uncertainty comes in to play a lot. Especially recently.

No one likes change, especially when it is forced upon them. Being thrown in to unchartered territory because pain has dictated so, brings a mass of temptation to worry about the consequences of a damaging physical condition. Life is getting difficult.

I am having to constantly adapt to doing less. And with so much energy, finding a balance of what I can do, whilst listening to what my body needs and knowing what I can’t do isn’t easy. In fact it’s depressing to be backed into slowing down all the time.

Yet to fight the temptation to push through the day physically, which is what I am used to doing, is useless. I cannot beat the pain. Its hard lesson to be learning – and I’m learning the hard way.

The last couple of weeks i have been heavily dictated to by a damaged central nervous system. Which is worsening despite the tools I have picked up at the pain clinic.

There have been three big head flare ups over the last week which have had me on the edge of insanity. Sat up through the night, pacing around downstairs trying to distract with music. Trying cold compresses and settling for Frankie’s hot water bottle tied to my head with my dressing gown chord. With nothing really relieving the hot electric currents.

Macgyver would be proud

I have also had three spells of collapsing with dizziness. Drained of energy and unable to move, sounding slurred with my speech and losing consciousness. The hospital have pointed me back to neurology. With nothing visibly wrong with my vitals, accident and emergency are at a loss with me. I concern about my job. Today was the second episode whist working a morning shift. I was then taken in an ambulance for tests and pain relief.

On the 10th March I have a brain injury assessment. With all my symptoms pointing towards it as a cause for my worsening condition, I am hoping for answers. Central pain syndrome usually has a cause. It’s been established I have damaged pathways in my brain, brainstem and spinal cord. Perhaps a clear diagnosis of a traumatic brain injury would lead me to the right support and rehabilitation. Because being in limbo, with all this uncertainty is taking its toll.

The girls give the best cuddles

It’s not natural to have electrical shock pain so close to the brain. It’s draining me and I am running out of mental steam and positivity around moving forward with acceptance. I thank God my wife is standing by me as investigations continue.

But for tonight I have the pink hot water bottle and a dressing gown chord. And perhaps il wake up feeling more like a man ready for battle. Because giving in isn’t an option. No matter how relentless pain is.

Limbo

Next month I have an appointment coming up that I’ve been waiting for since August last year.

It’s a neuropsychological assessment for brain injury/damage. I am in a strange place of limbo at the moment in that the professionals at the pain clinic are unsure what the next plan of action will be.

It’s become almost embarrassing how much my short term memory has begun affecting me in my every day activities. At home and at work. I can literally get lost in what I’m doing. As though I blank out and cannot figure out what I was doing. I have also had two similar episodes of dizziness and drowsiness that have landed me in A&E recently.

I am also struggling to find words. It’s like there is a problem from brain to speech. All the symptoms I am experiencing are pointing to a brain injury. And it’s all stemming from a whiplash injury in 2018. Something I saw as a minor event, is now having a major impact on my life.

There are other problems around auditory and visual hallucinations which are believed to be as a result of a neurological problem rather than a mental health issue.

Cups of tea are essential in pain management

The chances are the chronic pain is all tied in with the other neurological issues I am experiencing. Either that or it is all coincidental.

I already have a diagnosis of diffuse Central pain syndrome. A disorder that has a cause. I feel like I’m now getting closer to discovering and understanding what is happening with me. And from there, be able to access the right support and rehabilitation services.

Life has been incredibly challenging since the accident. And raising triplet toddlers brings its own set of challenges. I’m lucky to have the support of my wife in all of this. We have both been through the emotional wringer as a result of the forced changes in our lives.

But for now, as always it’s a day at a time. And hope of better days ahead.

Making sense of pain

It’s good for me to be able to talk about what I’m going through. Which is difficult with a rare pain disorder because not many people can comprehend what it’s like. So when I do talk about it, it’s either within the online group I am in, or at a fortnightly pain clinic appointment.

At the moment I am in strange place of limbo with my condition. All the work I am doing with the pain clinic is to find ways to reduce stress – which in turn will make managing pain easier to do.

It was strange in the early days of developing central pain to be told by doctors and professionals that it is basically down to me to learn about my condition, and make sense of it. With the frustration of clear MRI scans and nothing showing in my blood results it became what felt like an isolating time. People wanted clear answers, such as my wife who was struggling herself to deal with the massive change in my physical health.

I was told it would be a very long time before I understood the complexity of my condition. And if you have for any reason looked into brain function, neurotransmitters or tried to understand how pain signals are sent and processed in the brain through the central nervous system you will understand why.

But as I have discovered, understanding the science is easy compared to the complexity of learning how to make sense of managing it all on a daily basis. I have worked closely with the pain clinic on this. The number one item in my tool box is no non contemplative meditation.

Because the pain is permanent, it takes a big toll on my mental health. As much as I try to manage staying out of flare ups through rest and minimal physical strain, I always eventually become overwhelmed through sheer mental and physical exhaustion. I can’t avoid flare ups. And with no real pain relief, the strength to cope must come from within my mind. In mentally dealing with the pressures and frustrations of a permanent condition. Which is constantly evolving.

I’m 18 months in with central pain syndrome, still early days in the scheme of things and it’s the toughest thing I have ever had to face. And even though I now know a little, I am still trying to make sense of the pain. I have to stay one step ahead of something bigger than me, and largely beyond my control. And there lies the real daily challenge.

The feeling of failure

Over the last year I felt more often than not that I am not living up to being the supporting husband and father I want to be. This feeling of failing, which I’m sure all men experience at times, is just a reality of fatherhood. A result of the ups and downs we face in the stream of life, for whatever reason. I did after all, want this blog to be a place of honest reference. To share in the realities of fatherhood and the emotional ride it can be at times. The good, and the ‘not’ so good. Sometimes life gets difficult. I have ideals I try to live up to. And I do my best to live in a way that is a life of improvement for the benefit of my family. To work hard and be an example to my daughters is important to me, and for them to see that ethic in me growing up.
How I am in their eyes will be the man they judge all other men by. Which is why I meditate, to be a man of patience and tolerance. Not one who is easily rattled and affected by stress and the pressures of the world. It has been, as I see it, the one vital ingredient I need in my role to raise healthy confident children. I have always been aware that my wellbeing directly affects my family. I have written extensively on the subject since becoming a parent. Which is why this last year in particular has been so difficult for me. Before I had even heard of central pain syndrome, or considered a brain injury, I felt I had a good handle on dealing with all that went on in my life. Yes, having triplets was an event on the heavier end of the stress spectrum, but even still, with a past of serious mental health issues I was given strength to manage my situation with a strong sense of purpose. One I still hold on to. Which is why I find it hard to now feel as though I’m failing at times.
I am not one to admit that I struggle. That since all the forced changes in my life I have suffered bouts of depression from resenting those changes. No longer able to work full-time it has hit my pride hard. Because it has chipped away at how I provide for my family. The nerve pain and the memory problems are affecting me more than I’d like to admit. The stress I have had to adjust to, is creating other sensory problems. Ones that concern me at times. I have to accept life is different now and adjust accordingly. I am now accepting all the help I can get psychologically (without medication). If you have read my book you will know of the problems I faced growing up, significant life event’s that left me with a fighting coping mechanism of constant motion forward. Problems that I have never really stopped to deal with, that it’s now time to unravel. Because the easier I can deal with life, the better I can manage the pain. And the better I manage the pain – the better my mental health, and that of all those who are affected by it. Il get there eventually. Because I always do. Meditation is still my number one practice, it keeps me mentally above ground more than anything else. Bringing love to my family is still the most important thing I can do as a dad. And to not resent the changes and accept all that is occurring in my life without fear, to not be rattled by the pressures of life. Which now is sometimes easier said than done.

High voltage

I have been asked by a friend, who is admin of a central pain syndrome support group, to share my experience to be kept as a file within the group as access to new members as a reference of sorts. So that someone else who has been diagnosed may read another’s experience with this bizarre, brutal and exhausting condition. And more importantly how I deal with it on a daily basis.

So this in short is my story so far…..

In june 2018 I was hit in my car on my way home from work, by a guy in a van who didn’t see that I was sat stationary at a junction. His van and my car were both written off. I was in shock but felt physically okay with all the adrenaline running through my body. My air bag didn’t set off and my head and neck took a big jolt with the impact. A few hours later I began to feel burning in the back of my head. Within a couple of days I had stiffness and pain through my neck, shoulders and back.

The gp put it all down to whiplash. I was told it would take a while to recover but it would all be okay.

A few weeks later the burning in the back of my head began to flare up, it felt like a hot pressure, accompanied by electric shocks on my scalp and numbness and burning on the left side of my face. I had experienced these symptoms before. Randomly and with months between episodes that lasted only a few seconds. Only now the pain returned to be permanent.

I also began experiencing electrical pain through my spine and burning in my lower back and hips. I was also getting intense electrical currents in my feet. Also now a permanent feature.

My gp diagnosed trigeminal neuralgia, and with a 7 month wait to see a neurologist, in absolute agony and at the end of my rope, in the December I saw a private neurologist who discussed the possibility of Multiple sclerosis. He ordered Mri scans of my head and lumber reigion. The blood tests all came back clear. And after a worrying wait over Christmas, so did the MRI results. The neurologist then discussed, and explained central pain syndrome to me.

I was told it was a rare disorder in which the pain signals being sent through my spinal column, brain stem and brain are not functioning properly. That faulty pain signals are being sent. In short my brain is getting warning signs, it is creating pain for no reason other than my central nervous system is dysfunctional.

So began learning to understand my bizarre disorder. Physically I am in healthy condition. I don’t look like I have a disability that affects everything from my vision, to my cognitive functions to my muscles. This made it incredibly difficult for others to understand in the beginning. Especially my wife who was now having to deal with a husband who was struggling to physically and mentally cope with normal daily routines.

It also prompted a long period of experimenting with finding a nerve medication that worked. Regular pain killers such as opioids don’t touch the pain. Instead I take anticonvulsants. Medications that slow down the signals in the nervous system. Heavy drugs with heavy side effects.

There were days I sat in tears at the doctors during flare ups. Desperate for relief. I have been to A&E on more than one occasion begging them to inject my head with steroids – or give me anything that would give me an hour of freedom from the relentless voltage shocks in my head.

I was finally diagnosed with diffuse central pain syndrome in June 2019 after months of testing to rule out other diseases.

I’ve experienced bouts of depression, anxiety and insane frustration at the lack of help for what is a permanent condition. It’s almost broken me mentally. I experience hallucinations (which began prior to taking medication), most likely down to the stress of round the clock pain.

My saving grace has been the support of the pain management clinic who i see regularly, and have been attending since the beginning of 2019. They have given me a better understanding of what I am dealing with. And on the pain management course they organise, I met others suffering from similar conditions. It was relief just to know I wasn’t alone.

I can’t stress how important it’s been to connect with others. I found a central pain group on Facebook after my wife pushed me to start finding out ways to manage it. And when living with central pain syndrome it all comes down to one thing – management.

Once the realisation set in that pain was going no-where, and found a shred of acceptance I was left with one sole job. Manage the pain and still be able to function as a worker, a husband and a father to a demanding home routine.

Not always easy. I soon discovered that my central nervous system is in a constant state of threat, or wind up. With a life of it’s own which is exaggerating pain around my body. I figured out that I need to stop it from winding up to the point of flare up. Pushing through is off the table. If I overdo it physically and mentally, I pay badly for it.

I have settled on 600mg of pregabalin and 10mg Amitriptyline which helps to lower the pain levels so I can physically function, carefully I might add, I feel very step I take. My back feeling like it’s on the verge of shocking me and snapping. I’m constantly vigilant about movement. I’ve also had to work with what my cns is doing. If I feel levels rising I have to stop, get still and lie down, until it settles enough for me to continue with the day. Which I rarely get through without a nap.

I keep a journal of my pain. For the reason of the length between neurologist appointments. In a short meeting the more information you have the better you can be helped.

I am currently waiting to see a neuropsychologist for a brain injury assessment. The likelihood is that I have an existing injury. Probably caused from a lifestyle of alcoholism. Minor felt problems that I rarely experienced such as the shock pain in my face and head. It would seem that the accident has exasperated this damage and created more permanent injury.

As far as management goes, 90% is dealing with the mental strain. Not just of the major pain. But the secondary problems it has caused. Like the forced changes in lifestyle and in work. Which I now only work three mornings a week. I have had to adjust to the fatigue I now suffer from. Financial issues, relationship pressures all add stress, and as the main problem is centred in the brain, and as stress causes physical symptoms I need to stay as relatively stress free as possible. Low stress = lower pain.

This I personally do by practicing non contemplative meditation. The link is on my menu page if you are interested. When I am in a conscious headspace, the waves of electricity are easier to handle.

And in a flare up. – I have no advice other than buckle up and do what you can to get through it. If you feel your mind snapping get to A&E. Just know that it will pass, it may drag you burning through the gates of hell as it does, but it won’t last forever.

So now after 19 months of relentless pain, and all the other problems I have had to deal with, my advise to anyone would be to investigate all you can. Connect with others who can understand what you are going through and offer advice and support. Push your gp for the referrals you need and don’t give up, no matter how dark your head gets.

If you have family members, be patient with them. They will find their own way of understanding and helping you. Remember that your condition is affecting them also. Don’t be afraid to ask for the help you need. Show them how they can do this.

I hope this has been useful in some way. As for me, I need a nap. Writing this has exhausted my brain. And I’m starting to hurt.

Central pain syndrome

I never imagined that by the time the triplets began pre school that I would have gone through such a life changing event. One that has now affected every aspect of my life.

It has always been my main priority to take care of my family. With Stacey unable to work as a full time stay at home mum. I felt it my duty to be a good example to my daughters of man who works hard to provide for his family. And it feels like that rug has been pulled from under my feet. And il be honest, I’ve really struggled this year with the changes.

It’s difficult to get my head around that physically I am fit. Other than some wear and tear to my lower spine every single blood test and MRI scan has come back clear for any evidence of structural damage that could be creating widespread nerve pain.

It was suspected last year that the problem was centred in my central nervous system, so the tests were all a process of elimination to reach a diagnosis of Central pain syndrome. In simple terms I have haywire pain signals being sent within my spinal column, brain stem and brain. As a result of this shake up, probably caused by a car accident last year, my brain is now getting good at creating pain. And because my central nervous system is no longer functioning as it should it is in a constant state of wind up.

The advice from the pain clinic is to become my own advocate in learning about my condition. I’ve now accepted that it’s permanent and it’s down to me to find ways to manage the pain through rest, meds that work to slow down the signals in my nervous system (the strongest pain killers dont touch it) and mental management which I do my best to practice daily with non contemplative meditation. Not getting overwhelmed with negative emotions is vital. Stress can cause pain flare ups as well as physical activity.

There is currently no cure for central pain syndrome, although research is making slow discoveries around the complex condition. My case has now been accepted by a specialist neurological unit in Bristol, unfortunately I have a 7 month wait for my first appointment. Other than the group I have found on social media I am on my own with it.

Its put me out of work and caused all sorts of problems this year at home. The fatigue is difficult to deal with, I now sleep in the day just to give my nervous system a chance to calm down. The pain is widespread from my face to my lower back and hips. There are constant electric currents running through my feet which makes walking painful. I struggle to concentrate because I am in constant vigilance and awareness of what my body is doing. I have been told it will take years to get a handle on it, and in that time the pain will still be evolving.

I’m not writing this to complain. It is however a part of my life now that as a parent I have to adjust to and not become consummed by, which is no easy feat. I don’t want my limitations to stop me being a good dad. I’m determined to do as much as I can, and to stay mentally present each day for my family.