Cut loose
It is as though I have now been left to my own devices with CPS. Initially I had a nine month wait to see an NHS neurologist about the phantom pain triggered by a car accident. In that time I saw a private neurologist who suspected MS due to my symptoms, but all the MRI scans came back as normal. It was the NHS neurologist who diagnosed me with CPS as a result of eliminating other illness. He also referred me for a neuropsychological assessment to look into the memory loss and cognitive issues I was experiencing since the pain began.
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Medication time!
I thought it may be useful to share my experience with medications. It has been three years since the pain began and only now do I feel like I've found the right medication levels. A combination that is allowing me to function from day-to-day. This is just my personal experience. I am not a medical professional.
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A shift in attitude
I was angry, frustrated and exhausted from dealing with undiagnosed CPS (I still am during a flare up). I thought I was going crazy. No one could comprehend the pain I was experiencing. It was bitter sweet getting a diagnosis a year on from the accident. There was relief with a diagnosis, but I was also knocked down with the reality of of a lifetime of chronic nerve pain. It was a recipe for depression and anxiety. How the hell was I supposed to manage?
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CPS - What has changed?
It’s been 3 years this month since the accident that triggered central pain syndrome. It’s been a long and challenging road so far. Depression hit me hard to begin with and I struggled daily to function as I did before.
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The benefits of mindfulness
I was first introduced to mindfulness whilst in dialectical behavioural therapy, shortly after being diagnosed with Borderline Personality Disorder. We talked a lot about being in ‘wise mind' and not being ruled by our emotions. The meditation we practiced was based around Buddhist mindfulness and redirecting thoughts.
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Disguising pain
There came a point, early on my CPS journey that I became self conscious of my need to talk about what I was going through with others. The problem was that no one knew how to help me so I began turning my frustrations inwards. To talk just seemed like I was complaining.
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The Resentment Trap
With CPS it became apparent that there was much more to the pain than just the pain. At the pain clinic we discussed what they called secondary pain. The fear and resentment that we all suffer from as a result of living with CPS.
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Brain fog and small talk
If you were to meet me in a social setting, one thing would become apparent other than my quietness. My lack of an ability to make small talk. Unless i’m speaking on a subject i’m well versed in such as mental health, alcoholism or CPS, I struggle with general chit-chat.
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Beat by the weather
As much as I can stay positive about my experience with CPS there are times I just get beat. It wears me down occasionally and it’s hard to see any positivity at all. Spring time can be a test of endurance with CPS. I live in the UK and this season in particular has thrown me around all over the place. I feel like I'm going rounds with the weather. It can be hot and sunny one minute then raining down hailstones the next. It's playing havoc with my nervous system.
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The Moment
How many of us can say that we really live in the moment? A lot of us have busy lives, and with CPS to deal with it seems such an elusive concept. We are rarely present in what we are doing. Even when relaxing our minds don’t seem to quiet down. A bombardment of thoughts steal away the here and now. leaving us in resentment towards the past or worrying about future events that may - or may not happen.
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Mental Health Matters
As a recovered alcoholic, now dealing with Central Pain Syndrome it is vital that I maintain good mental health. This isn't always easy. Like most people living with chronic pain I have ups and downs. Slipping back into the abyss of obsessive drinking isn't an option for me so as a means of survival I need to keep myself well. My mental wellbeing and spiritual growth matter.
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Meditation vs The Monster
Living along side CPS takes skills and strategies. Sometimes distractions as a temporary tool can be helpful in dealing with relentless pain. Sometimes tweaking meds help. We all have different ways to deal with it. Meditation can be an effective way to deal with the mental pressures we face.
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Guilt
Unless a person is suffering from chronic pain it is hard to comprehend just how punishing it is. CPS sucks the life out of us at times and we experience the feelings of crushing defeat regularly. It often leaves us exhausted and without the motivation to do little else than just deal with the pain.
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Kindness
Developing CPS has placed a lot of weight on my shoulders. After all I still have my responsibilities as a husband father and employee.
It is difficult not to be hard on myself when I feel the constant stress of my situation. Some of this pressure I have created myself. There are times I have pushed to try and gain control over the monster, believing that I could somehow beat it. It never works.
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On Fire
Up until just over a week ago I had been making the most of a run of lower pain levels. I felt mentally strong and was dealing with life much better as a result.
I almost forgot how dark it can get in a flare up and how quickly my mental state can sink.
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Defined By Pain
Over the last few years my wife and eldest daughter have regularly seen me curled up on the floor in pain, sink into deep depression and struggle with daily life. They have seen me in tears of frustration and hopelessness. A far cry from the man they knew before the accident.
Pain has been all consuming for myself and my family. There are times my wife has had to act as caregiver. And times our marriage has hit the rocks because of my mental state.
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Emotional Trauma and Chronic Pain
There is a link between emotional trauma and chronic pain. It's not just physical damage that can contribute to pain conditions.
It is why making peace with the past and ourselves is so important if we are going to successfully manage our pain. And as importantly we must find a way to deal with stress in the present moment. We must find a way to forgive - to let go of resentment.
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Forced Changes
It has been almost three years since I developed Central Pain Syndrome after a whiplash injury. And in that time myself and my family have had to deal with a lot, especially on an emotional level.
One of the biggest hurdles I faced from the beginning of the pain was the forced changes to my life. As I struggled to adapt to chronic pain that was yet to be diagnosed, things changed rapidly for me. I suddenly had limitations.
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Would I Change My Situation
I have been asked quite a few times: if I had the chance to go back to the night of the accident and change it, would I?
You would think it was the easiest answer in the world. You would think my answer would be YES without hesitation.
The truth is that it’s not a simple yes/no answer.
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Practical Suggestions For Getting Through The Day In Chronic Pain
After years of experimenting and collaborating with hundreds of other chronic pain patients who have Central Pain Syndrome, I have come up with a simple list of daily “to do’s” that are guaranteed to make your day at the very least as healthy as it can be.
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