Stress & chronic pain management

At my first pain clinic appointment I was told that they couldn’t fix my pain. I was a little surprised by this as I was expecting physical treatments like steroid injections or new medications. Anything that would give me a quick fix by people who would understand what I was going through.

Instead I soon realised that what was on offer was pain management. Ways to alleviate stress, and therefore be in a better mental condition to live with the pain I was experiencing.

In the pain management group I signed up for the talk was more about diet and mindfulness, not a steroid injection or a magic wand in sight! It was not what I was expecting at all. But the more I dug into my own experiences the more relevant a factor stress became.

I was on the back foot to begin with. After all I meditate daily, and my pain began as a physical result of a car accident rather than a stressful incident. Although the accident brought it’s own stresses, none more than the permanent nerve pain that began following the incident.

But I was open to listening and understanding, and soon realized that stress and chronic pain go hand in hand. Therefore managing stress became paramount if I was to be able to cope from day to day with CPS.

When the suggestion of seeing a clinical psychologist was brought up my immediate reaction was ‘nope, no need to go down that road’. But in looking at the whole picture of my situation I began to see how that bigger picture was now playing a part in the way I dealt with, experienced and managed my pain.

I had triplets to raise, a family to support. A long history of mental illness that had never been fully addressed or discussed. There was childhood sexual abuse that had been kept brushed under the rug. All problems that without pain I was dealing with quite well with on my own.

But now add in the factor of daily widespread electrical nerve pain, the stress of not being able to support my family workwise and a whole bag of worms now opened with it. My past it seemed was also now catching up with me.

I had to be willing to look at past suppressed resentment and fears in order to make my pain more manageable. Everything became relevant, no matter how insignificant or irrelevant it seemed.

In short I accepted help and in doing so have gradually improved my pain levels and lessened the hell-born flare ups.

I still have a long road ahead. But with understanding of the direct correlation between pain and stress. The road may become a little easier to navigate. Minus the steroid injections and magic wands.

Diet and pain

Learning to live with chronic pain has forced me to seek better ways of managing it. Medications help me function but beyond that they do little to lower the pain of flare ups.

Over the last few months i had sunk into a depression from the frustration of having to live with chronic nerve pain. And in disappearance up my own backside, I was causing problems with my relationships at home. Something had to give.

It has been Stacey that has nudged me to becoming aware of the darkness i found myself lost in. Deppresion caused me to get bogged down in self pity around my situation. The further I sank the more I was removing myself from my duties as a husband and parent. It’s my job to bring stability to my home, instead I only brought problems.

Lately some big changes have occurred that have dragged me back to a better mental place. Which in turn makes the pain easier to tolerate.

As well as stepping up my meditation practice my wife suggested a 7 day juice only detox from sugar and carbs. And to follow it up with a healthy diet. This would also help keep the weight off that I had put on from taking medications and comfort eating over the last few months.

The results have surprised me. As well as losing a few pounds my mind has been clearer. I have also come off some of my medication that were causing me drowsiness. I have now got my medications right down in dosage.

I feel mentally alert which is making dealing with the pain more manageable, rather than being overwhelmed so easily.

I have added turmeric to my diet which is a natural anti inflammatory. All in all I have made a big life change which it seems is paying off.

I am responsible for my pain management. No one can help me alleviate the symptoms, that job is solely down to me. And the more I can do to make changes in the way I treat my pain the better my life becomes.

It’s a good feeling to have got back some control over my cps. Because for a while the monster was getting the better of me.

Living with the monster

It’s 1am. The house is silent, and I find myself woken up with nerve pain in my head – again.

There’s no reason for the pain, I haven’t hurt myself today or had an accident, there’s nothing to visibly see. Only invisible waves of sharp electricity radiating along my scalp to my face that I feel with a heavy intensity.

I’ve got better at handling flare ups. For example I no longer go to A&E to seek relief, because the pain is neurological, it’s being created by my brain. And the hospital don’t have a single drug that can relieve it. Instead I ride it out, because I have no other choice.

I’ve made the mistake of adjusting my epilepsy meds today because they don’t help with my fatigue, they slow me down and I get drowsy and struggle to stay awake in the evening. Which in turn affects my personal relationships

It could be the tweak and lowering of the meds that has ramped up the pain. Or it could be a random assault. Just my brain receiving faulty signals from a damaged nervous system.

Distraction helps, writing is good, if only with one eye open, it removes me from the hot stabs and burning that could all stop in 5 minutes or drag on for hours. My hope is that it doesn’t get any worse. Because with more intense pain I get frightening thinking on ways to stop it.

Faith goes a long way

Tonight the monster is awake and I am at it’s mercy. It doesn’t care that I’m tired or have triplets to deal with. It couldn’t care less than that il be drained tomorrow. It’s simply vicious.

I have tried every way to manage it, like slowing down so as to not send my nervous system into wind up. No matter what I do I have to share my body with something so bizarre it cannot be seen or made real sense of. Doctors don’t understand it, only the few pain specialists that treat cps get the struggle.

It scares me at times, not so much the direct pain, but where it takes me emotionally when I am drained of all resources to fight it. Some days it just rears up and grabs me, or pulls me from my sleep. Like tonight.

And all I can do is see that it’s there, try not to resent what is happening and wait for it to dial back down. To enjoy the better days and buckle up for the worst and stay strong for my family.

Acceptance

There is so much going on in the world, it can be difficult to not get drawn into the drama and dragged into the emotional pulls of fear and resentment.

Living with chronic pain is no different. It is all too easy to get drawn into depressive thinking and self pity. I find myself constantly vigilant of the negative thinking that crops up unannounced and has the ability to pull me in and ruin my day.

If there is one thing I have learned over the last couple of years of living with cps, it is that acceptance is a saviour of my mental wellbeing in the times I struggle the most

Acceptance is not approval. It’s important to understand this. I don’t approve of the negativity that rises in me from time to time. But I can accept it’s there without getting dragged into a mental conflict. I am now able to just see what goes on within me with out judgement. Acceptance has the key to freedom in that sense. It makes it an incredibly powerful thing.

Most of my problems since chronic pain began have been caused by my reluctance to accept my situation. I resented the pain and began to resent my life as a result. When anger/resentment gets in it upsets the balance of wellbeing and blinds any purpose I have. All I feel is self pity and frustration. And when lost in those emotions my pain dials up. Stress is a massive factor of Central pain syndrome.

It has taken me a long time to find acceptance with my condition. I have resented it and had fear towards the future and how effected I will be in ten years time.

Depression occurs when resentment is turned inwards. It is a symptom of a lack of acceptance, when resentment has taken hold of my life and I succumb to its negative pull. Only meditation can return me to a place of consciousness. Where I can find acceptance and let go of my frustrations and fears.

I only ever need to live the present moment. Free from the resentments of the past and present and future fears.

I don’t approve of the pain I experience. Nor do I approve of the affects CPS has on my daily life. But i accept it is there, and that at times the monster is bigger than me. And in that acceptance I find peace from giving up the mental struggle.

Here is a link to a free meditation that has helped me more than anything.

https://tripletdad.blog/2019/01/19/the-meditation-2/

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.