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.

A glance back at 2019

As was pointed out to me recently my life is not normal. In many ways it never has been.

From the self created tornado I got thrown out of 6 years ago before meeting Stacey, we have had little time to stop to breath. A year after getting married a triplet pregnancy brought me into another tornado, one that gave me more purpose than I have ever felt.

If you follow this little corner of the web, you will have followed our journey as a family. And it’s been an intense ride.

From having to adjust to a doubling of my family unit overnight – to having to step up to the emotional pressures I faced as a first time biological dad, I’ve had to stay on the ball to overcome the fears and concerns that arised in our situation. Having missed Frankie’s early years, being baptised into the fire of newborns with triplets has been no joke.

This time a year ago on new years eve I was taken into to hospital for an MRI scan, unable to walk and overwhelmed with widespread nerve pain. So as well as dealing with home-life over the year I’ve been faced with the discovery of a permanent pain condition and now testing for traumatic brain injury. But today I feel good, rested and positive about the road ahead.

Works changed, my personal life has been physically and mentally limited but they are new adjustments that I will overcome and adapt to.

As for my daughters, Frankie is now at high school, loving the experience and doing well in her classes, exceptionally in some. She has found her place as big sister to her three bossy little sisters, she has a patience with them. A principle I strived to bring to my family that is continually paying off.

My wife has become the ultimate mom. I am in awe at her natural ability to manage our daughters needs. She has a flawless intuition to deal with them in a loving no-nonsense way. Her strength and ability to find humor in any situation has been a rock for us this year as I’ve struggled at times with accepting my condition.

I also managed to complete and publish my book in the summer. A labour of love which documents my journey into insanity as a result of my own dysfunctional upbringing and lack of a father’s support. From overcoming the damage of my past to becoming a loving parent and how I dealt with the pregnancy and first six months of the arrival of triplets. I wanted to give an example of the difference a father can make to his family when love and tolerance become central principles to his home.

The title has recently changed so as not to be confused with it being a self help book. ‘From triples to triplets: The making of a triplet dad’ is now available on Amazon.

Now as the year closes to and end I still feel a sense of achievement, one that comes from faith, and stepping back to see my family thriving and growing in confidence despite the challenges we have hit along the road.

I have no doubt the road ahead will continue to bring its struggles and highs and lows, but as dad it all comes back to one thing for me. To stay strong and to do my best to raise my family with the love and light that has brought us this far.

I wish you all the best for the new year. And that it brings you all you need – and a little bit of what you want.

Si x

5 years!

Five years ago on a beach in Dubai, after a beautiful church service I finally tied the knot with the beautiful Mrs Wood.
I was the most memorable day of my life. I even had a ring made for Frankie and read her vows, she started calling me Daddy from that day.

To say the last 5 years have been a rollercoaster would be an understatement. Among the inevitable ups and downs of life we have stuck together and grown together to create a loving family, one God saw fit to entrust us with the triplets.

Stacey I am proud to be the man you chose to be by your side through it all. And proud to be your husband. I love you and wouldn’t want to share this beautiful insanity with anyone else x

A Christmas break

I hope you have all had an enjoyable time over this Christmas period. As hectic as it may be.

We have been able to share the load as it were with Stacey’s family. It means we get to rest and recuperate a little. With extra bodies to chase after the triplets and help with the routine it’s a break we always look forward to with a a sense of relief.

The girls were more aware this year of what was going on as far as Santa goes. Being 2 years 6 months old they are far more active and excitable which has made this year so much fun.

They loved Christmas morning, coming in to the living room in the morning to find three sacks from Santa. They received books, learning toys and games. Their fascination with books keeps them occupied for ages which gives the rest of us time to focus on other duties. They’ve also discovered peppa pig, a program they love.

They are interacting and playing with each other constantly at the moment. They still jiber jabber in their own language but their speech is also coming on well. Ava loves to point out who she is and tell stories, Blakely loves to sing and Lacey likes to grab your hand and take you to show you things around the house.

Stacey and I also have some time booked out for ourselves. Her sister and family are taking the triplets over night our wedding anniversary date. So a meal is booked and a day to ourselves will see us free to not be constantly wondering what girls are up to. Just to have that drop of responsibility for a short time is a real treat. It means we can focus on each other. A rare opportunity in our lives now. Frankie is also enjoying a break from routine and spending time as she pleases.

This break has been much easier for me pain-wise. I made sure I had a plan in place to take short rest breaks, to not push myself as I always have done and to not feel guilty for stepping back a bit. So far, with meditation and a change in medication, along with tips and tricks I’ve learned in the pain management group I’ve avoided a flare up so far and kept my pain levels down. It means I get to enjoy the day’s more, rather than counting down the hour’s until I can get into bed.

We will be seeing the new year in before we head back home. Only now I’m beginning to feel more optimistic about managing my situation. I have a few important neurology appointments coming up and with continued support and work with the pain clinic I feel less pressure to push myself. Pressure I was only creating for myself.

I have finally began to accept my illness, and in doing so stopped the mental struggle of dealing with forced changes in my life. It’s been tough, but I have faith, a strength far beyond what I need to continue working towards remaining a good husband and father. In a sense I know I’m taken care of, whatever happens down the road.

On another note if you got a kindle for Christmas and need a good book to read, my first book release is available on Amazon. With 5 star reviews it is my personal journey into fatherhood. Here’s the link.

Si x

Merry Christmas!

Firstly I hope you are all well and looking forward to a Christmas holiday spent with friends and family.

We have made our annual trip to Stacey’s parents for the holidays. Which means extra space and a few more pairs of hands. It’s a break we’ve been in need of after such a turbulent year.

The triplets have been getting a handful lately. They are not bad toddler’s, just at an age of testing the limits with us. So we’re both grateful for a break from our routine. As you can probably imagine with just the two of us dealing with them on a daily basis it’s not a circumstance without its pressures.

Frankie also gets to spend some quality time with her cousin which she always looks forward to. A deserved break from dealing with babies, as much as she loves her sister’s she understandably needs a break from them and to have a little time out.

I can’t put into words how proud I am of her, especially since she came home with her first term report from high school and discovered that she is excelling in a few classes. To have experienced all she has at such a young age and to remain so focused just shows how strong she is. The triplets absolutely love their big sister.

Stacey has also had a huge amount to deal with since the uncertainty that surrounded my health last Christmas. It’s been established that I have an underlying brain injury. Much of the cause down to decade’s of head injuries while living an alcoholic lifestyle. It would have been a miracle had I emerged from that life unscathed, unfortunately a car accident last year has exacerbated existing problems. Ones that we are both now having to come to terms with.

My wife has to deal with my memory issues and cognitive problems as well as the debilitating chronic pain. But we have a strong marriage, and she has a no nonsense sense of humour that keeps us positive about our situation in the tougher times. She deserves a medal, I’m a lucky man to have such a good woman in my life.

So from my family to you, wherever you are in the world in this season of forgivenes, love, compassion and hope, We wish you a merry Christmas.

Thanks again for taking the time to follow my ramblings. It means a lot to me.

God bless

Si x

Lowering the bar

Maybe a step backwards is a chance to review where we are and discover a different way forward? A little like learning from a mistake. I like to think of it this way as my car seems to get stuck in reverse more than it does first gear at the moment.

have spent the last year mentally punishing myself for losing my footing in life due to illness. Up until the accident I knew what I wanted to achieve in life and had the physical and mental ability ability to stay on the path I believed I was supposed to walk.

Knowing my responsibilities keeps me afloat at times

Now I’m in a rut of constantly lowering the bar in life with what I want to achieve. The bigger goals in life have rapidly slid out of the window and instead the goals I work towards now are more like going to the shop, remembering what I went for and making back without a physical flare up. Or making it through the day without having a sleep. These are achievable, but not always.

The better days of manageable batterings are hampered by the reality that any moment, for any number of reasons my central nervous system will start firing off signals to my brain which doesn’t hesitate to respond with pain.

Flare ups do not happen regularly. But when they do I cannot describe the physical and mental torture I have to endure. They are exhausting, draining and unbeatable. I have to learn to live with them. Central pain syndrome is like having an unwanted companion that is ready to knock you out with a shovel when it thinks you need it.

I keep as busy as I can to stop seizing up

Needless to say I have found myself going backwards occasionally. After years without deppresion I find myself getting overwhelmed with negativity, struggling to stay conscious of what is going on around me. It’s In these moments I get fed the horrible thoughts, the self pity comes down like a hammer and among the electric shocks and brain fog I run out of mental steam. I simply can’t cope. I have sat in tears on more than one occasion, beaten down by pain I cannot control or stop. I’m not ashamed to admit it, there are moments it’s almost broken me.

The biggest problem is that I begin to resent. And when I do my pain levels increase. Stress is a big factor in flaring up my condition. So I have had to stop fighting myself to pick myself up and push on. I’ve had to accept new limitations around work and physical activity. And be okay with them. I’ve had to ask for help at home which I find difficult. Because I feel like I’m failing my wife in doing so. We have both had to accept a new situation. It’s not been easy for either of us. We have to be okay with me being less.

So I’ve accepted that there will be steps backwards occasionally, and that I am going to get overwhelmed in the times my condition gets out of control.

I need to remember that the path I was walking is no longer there, that much of what I wanted is now beyond reach. So to step backwards has opened my eyes for the need to find another route forward. One I can manage with out resenting and bring a bit of peace back to my mind. Life has changed, and among the other forced changes I need to mentally adapt, because the shovel is coming whether I like it or not.

A little review goes a long way

Hi all.

I would firstly like to say a big thank you to all who have bought copies of my book. As a first time author, and being unsure how it would be received I have been overwhelmed with the positive messages and feedback I have been sent since it was published.

I believe a father’s perspective should be made available to anyone who may want to understand the emotional journey taken by a new dad.

If you have read it you will know that it isn’t a parenting manual, or a ‘how to’ book. It is written as a personal story of my life as it was as a result of a destructive relationship with my own dad. And how the hard lessons I learned from that relationship drove my need to be a better man for my wife and children.

From getting sober and meeting Stacey and Frankie, I then document the pregnancy and first six months of the triplets arrival. And share honestly the pressures I faced during that period of my life. Pressures that threatened to pull apart our relationship had I not already discovered a way to cope with stress.

It is a journey from triples to triplets. A loaded book that I am told is a page turner. I am just glad it is already benefiting others in some small way.

I would greatly appreciate if you have read my book to leave a review on Amazon. Being self published, it is the reviews that will stand out. And I hope this book reaches as many struggling parents who may not otherwise discover it.

Many thanks

Si

Autumn

It’s difficult to believe that Ava, Blakely and Lacey are now almost two and a half. And they have definitely rolled into the infamous two’s.

If this means having a meltdown because the corner of a biscuit is missing, or getting overwhelmingly upset because you can’t put your books in the bath. They’ve arrived at the age some parents dredd.

Our house is bursting with different personalities. When the girls are up and awake they are busy, hectic and cheeky. A non stop force of energy.

It would be easy to get frustrated at them while they step into this age of hormone bursts, irrationality, frustration at not being understood, and also just testing the waters with us as parents. To see how far they can step the mark before no means no. It can get tiring. But it’s also an incredibly important time for them to begin to discover themselves. We have to be so on the ball, with everything from discipline to being willing to listen to any conversations they come to us with. Our attention is vital to them.

It’s a given that Ava will be the head of her own company. She’s advanced in her mental abilities and is a little girl who knows exactly what she wants, when she wants it and how it is to be delivered to her. We are currently all here to serve her. Make no bones about that.

Lacey is sensitive to others, quite the opposite of Ava. She needs a little more reassurance in her decisions and adventures. She is happy to join in with Ava’s ideas but is always the one checking back at mum or me to see if there’s a reaction coming. She likes to be good, to be told she’s doing well. And she loves her Daddy at the moment. She’s never far behind me.

Blakely is just Blakely. She has immense physical strength for a little one, and also has the least concentration unless it’s something she’s found she likes to do. She has fire in her belly when she’s upset and makes sure we all hear about it. She is also a master at hiding. My personal favourite is when she just closes her eyes and smiles while stood In front of me, convinced I can’t see her. She loves her dolls and Milo. She also loves books as they all do.

They are changing daily. And growing into confident little girls (especially Ava). Together though they still play well. There are more times they are taking care of each other than fighting. Their sisterly bond is strong, they are completely, and beautifully connected. And no matter how relentless and trying they can be at the moment, we are blessed to have been entrusted with them.

Early bonding – the vital connecting of dad and baby

Looking back at the early days, and the pressures surrounding a high risk pregnancy it would have been too easy to have got lost in the stress of our situation. It was inevitable in what we were both facing.

Stacey was struggling badly from the first scan in dealing with the reality of our situation. The weight of the pressures we both felt was putting a massive strain on our relationship. It’s as if we veered off into two separate directions in our reactions. Me in excitement, Stacey into fear.

Knowing the damage that stress can cause to a pregnancy and the complications it can create to an unborn baby I had to take the the lead in practicing patience and tolerance at home. Yes I was overwhelmed with the situation we found ourselves in but I couldn’t allow myself to get pulled into my own fears. Two of us panicking would have complicated everything.

As strange as it may seem, and it really pissed my wife off, especially in the early days of the pregnancy, I felt a connection to the triplets from the minute they were discovered. There was a part of me that could intuitively see the bigger picture. They were a gift. To all of us as a family.

I know a lot of men don’t feel this way, but also many others do feel the purpose of the path they have been given as fatherhood. It’s an exciting, frightening and daunting realisation to feel the gravity of such a life changing event however you feel.

Feeling my purpose I knew that a show of my consistency to my wife would do more than any words of comfort would. I needed to show her I meant business. That I was up to the task that was coming and that worrying about my ability to cope and deal with multiples was not something she would need to be concerned about.

This meant action on my part. Which meant bonding with my unborn daughters. A show of affection and love that would benefit my wife, myself and my 3 growing daughter’s. I also got my step daughter Frankie involved. As big sister she was also feeling the uncertainty of our future relationships at home.

We began talking to the growing bump each night. I felt a bit stupid at first, but knew on a conscious level it was my duty to make the effort.

We would read stories to them. Play them music. I would tell them about the family they would be joining and how much love they would be born into. And I stuck with it. No matter how tired or irritated I felt.

It was a simple act that also kept my feet on the ground in the harder times. I never stepped to far away from the bigger picture and it paid off.

Once they were born, the first time I got to hold them, they knew my voice. The nurse in the SCBU even mentioned the calming effect I had on them. And it was only because I put the effort in from the start.

If you are taking care of a pregnant partner and struggling with the weight of the pressures you face. Take a little time with the bump each day and don’t feel embarrassed to do so. It will remind you of the importance of your role as a father. To bring a little emotional stability and calm to your babies in the most insane of times. A vital job of responsibility that will fall on your shoulders going into fatherhood. It’s a great beginning.

And it will be worth it.