My journey to the top of St Paul's

Paul, a most delightful and courageous patient of mine, agreed to share his story with us. A journey which probably should never have taken place had he been listened too, accurately diagnosed and appropriately treated at the time. The responsibility for that lies at our feet as medical professionals. This is not a scientific paper or indeed proof as to the effectiveness, or not of his treatment. At the end of the day Paul got himself out of trouble. It is a story for you to make your own decisions from.

The Recipe

The main ingredient was to listen, believe and trust that his truth was his reality and to reassure Paul that, with the right approach and his trust in the process that he could get his life back again. The full repertoire of the NOI teachings were invaluable for this task of gaining trust and commitment from him, and myself. We started with tutorials about “Understanding Pain” using the Explain Pain book as a reference point. The Protectometer was introduced early on and was vital for our communication, sprinkling our sentences with DIM & SIM quotations. Gently, Graded Motor Imagery was introduced, initially with the recognise program advancing to mirror therapy and virtual visualisation, mix and matching as we went. Painful Yarns gave perspective in reality. The Amazing Nervous System supplied touch, a constant component throughout, using neurodynamic techniques and mobilisation for the “issues in the tissues” the like of which do not need to be shared here. It is just to say that our hands, and the occasional hug, always have a place in the treatment plan.  All the above stirred gently with love and compassion.

The introduction, gently, of a psychotherapist was only possible through the use of the Protectometer. This highlighted that “Things going on in the Body” was just one piece in the puzzle of pain. Susie’s work consolidated our new language of DIMSIM, making discussion that much easier when assessing and reassessing the DIM SIM balance.

His Words

“In my 20s and 30s I regularly played park football. I loved it so. I had various injuries, e.g. broken teeth, cracked ribs, etc., but I always came back playing. However, one day when I was 35 I was running late for the game, I did not warm up and during the game, whilst going in for a tackle, my right leg slipped backwards and sidewards. I suffered a groin injury and never played again.

The injury never completely went away. For years the pain (sometimes unbearable) would come and go on a weekly basis. I was never able to get to the bottom of it. Diagnoses varied from Gilmore’s groin, torn acetabular labrum, inguinal hernia. I had varied tests and some invasive surgery (e.g. inguinal hernia mesh, injections).

Nothing worked, and then I was told I would have to live with it. However, It suddenly went away, only except for say one period per year! However, I always felt, well knew, it would come back.

10 years or so later (Summer 2014) whilst on a family holiday in Ireland, my groin “went” the day after a long day of golf. Ultimately, I knew it was back and this time, it came back big time with a vengeance. The pain was getting worse and I was getting more and more immobile as I was scared to move in case there was something very wrong with my groin and I could make it worse by moving around. A couple of months later I could not walk, I was in daily agonising pain, and I could not stretch my right leg at all. After spending thousands of pounds having various tests through NHS and privately, doctors could not find anything wrong. My life was a mess, I could not work because of the pain, I could not do anything, I was depressed and desperate, I could not live. I was housebound and wheelchair bound. I just sat there crying and waiting to die. I had suicidal thoughts. I knew my life was over. I had lost it! I thought I was a laughingstock for doctors, friends and family. I deserved it. And it was all my own fault!

The pain in my leg became really unbearable – once reached 9 out of 10. Doctors were convinced it was muscular pain rather than vascular but in the Autumn 2014, I had a pulmonary embolism, after part of a DVT in my right leg had come loose. Doctors told me I was lucky to be alive. The pain disappeared briefly for a year, a respite! However, it came back again in 2016 and again another year of immobility, self-loathing and constant pain. I hated my right leg and my groin. I did not want it, I wanted it taken off! Back to the wheelchair. The doctors had confirmed I had CRPS.

Around late 2016 I remember sitting in my lounge and saying to myself this is not working Paul. I have 8/10 pain and I am miserable as hell. Hey, why not instead just be happy regardless of whatever the pain is. If I keep going with the happy, even if do not actually believe it, it may reduce the pain. Throw some mud against a wall; some of it may eventually stick.

We then saw a wonderful compassionate doctor on the private, Ian. We agreed I needed a holistic approach to this predicament. He referred me on to David a physiotherapist, who in turn later, also referred me to a psychotherapist, Susie to help alongside.  I initially expected them to fix me! It took time for me to realise no, it was my responsibility, not theirs to get myself better. It took me time to realise they just gave me the tools, it’s ultimately up to me.

As homework from David, I read much of the Noigroup literature. I gradually learnt that although my pain was real it was not needed. The car dashboard story for me was one of many lightbulb moments during my rehabilitation. I previously always thought I could only ever get pain management for chronic pain. Now, I realise there is actual pain treatment out there.

I went on board with re-education: Learning about SIMs and DIMs – seeking SIMS, attempting to reduce DIMs. Daily Recognise apps, watching people walk, imagine walking, etc.

Acceptance and compassion have been key. It was not easy, but in the past whenever I had a relapse, I used to be so angry with everything and everybody. Ultimately, I was angry with myself. I would hit and abuse myself, even in public. I have slowly but surely been able to increase my acceptance when I was suffering a dip – DIM storm.

I have learnt to be self-compassionate with myself and love myself again. When in pain I talk to my leg. I have found a way of reducing my self –anger. I talk to my inner self – I talk to the little boy inside, the one who has all the pain, the suffering, the anger, the one who wants to sabotage. I hug him and say how much I love him. I tell him he is ok, that he is safe.

I regularly do mindfulness, meditation and ASMR. By regular, I mean daily. I have found these three methods wonderfully uplifting, relaxing and calming. Less obsessive thinking, less analysis and more observational. Being in the here and now has improved my rehabilitation massively. Being mindful can be done anywhere, anytime. Just walking around the block observing the leaves on the trees can give me liberation.

Positivity and use of language I have found to be absolutely essential. Being positive even when I do not internally believe it at that moment just has to be done. I used to describe my pain with drama – ‘I feel like death’, ‘it is like a knife cutting me up’. My language was so negative -, ‘just typical’, ‘I knew this will happen’. Now I have reduced the dramatic pain descriptions and replaced it with actual factual observations – e.g. right now the pain level is 2 out of 10 or 6/10. I tell myself 5+ positives every day. Ultimately, I now say to myself ‘I can’ rather than ‘I will’.

My drug management was out of control. I was taking various analgesics, anti-depressants, anti-anxiety, diazepam, and opiates. My opiate intake was getting more frequent and stronger (moving from over the counter to tramadol which doctors were more than happy to dish out). These have all been cut out. It has been a slow process, but I have now reduced all these pills to zero. Opiates are not for chronic pain!

So, I have my life back again. There is a long way to go and there are good days and there are bad days. Stress e.g. at work or because of illness of a family member, brings the pain back. I would be lying if I said that I no longer have doubts. However, I know now that I believe that even though the pain is totally real, I do not need the pain. I am safe.

I remember back to the time when I literally could not walk a few steps at home. Just a few months back we had my wife’s family over. We walked up to the top of the dome of St Paul’s cathedral and I was leaving them for dust whilst walking to the top. My life is back and it is wonderful. My ultimate goal is to be standing on top of Scafell Pike holding my wife’s hand looking across the Irish Sea. I know we can do this. Onwards, upwards!

It is now 2020. I have been out of a wheelchair for 2 years now; I have done away with the walking sticks. I have my life back. I see many people out there on walking sticks, wheelchairs, I do not know their story but I presume a lot are suffering from chronic pain. The message has to be passed on. My doctor recently told me during her time at my local GP practice no one had got themselves out of a wheelchair. She asked me how did I do it? I wonder if she listened to my reply?”

-Paul, with David Bolton