Joe’s pain story told by his mum Jenny as part of the UP | Understanding Pain Campaign that launches this Saturday with 700+ singers performing at Heathrow – follow us on Twitter @upandsing to show your support
It was the morning of Tuesday 27th November 2012 and the usual school morning rush was well underway when my son, aged 11, lent forward and picked up his school bag. Straight away he complained of back pain, he was unable to fully stand up straight but by no means was in agony. I explained to my son that I felt his muscles were in spasm and the best thing for him to do was to keep moving. I work in a sports injuries clinic and said that I would book him in after school for a massage. I’d only been in work 10 minutes when the school called to say that Joe had ‘got stuck’ bending down at this locker and could I come and collect him. Joe shuffled out to the car in a manner that I had seen many patients at work walk and knew he must be in a fair amount of pain. On the subject of pain I would like to point out that Joe was no stranger to pain, he’s broken bones in his foot and not even muttered anything about it until I noticed the lovely purple bruise. He’s been a keen cyclist since the age of 5 and has had crashes resulting in loss of skin and friction burns; crashing at around 30 mph dressed in lycra is always going to hurt! Thinking back over Joe’s life he had never complained of pain and he was always one of those people who would rather get on with it.
Joe’s muscles where indeed in spasm and the physio treated Joe as much as he could but he recommended further investigations at our local hospital. The local hospital listened to what had happened and sent us home with paracetamol. That evening Joe’s pain became worse. He was only comfortable lying on his side and struggled to walk, I started rotating paracetamol and ibuprofen every two hours but nothing was touching the pain. We tried every distraction technique we could think of, hoping that once Joe slept he would feel better in the morning. Joe was literally screaming with pain by midnight, we had no way of moving him to the car so we called an ambulance.
To cut a very long story short this first hospital visit was the first of many. Joe would be screaming in pain day in day out. It was the most heartbreaking thing to witness as I had no way of controlling his pain. Our local hospital had no way of controlling Joe’s pain either, they had tried everything they could think of but where unable to pinpoint why Joe was in so much pain. Our experience at the hospital soon became very stressful, we became in a loop of ambulances and ward stays. One day they sent us home and within two hours of being at home Joe started screaming, ‘blacking out’ and screaming again, it was relentless and we had no option but to call for another ambulance. Thankfully by now they were used to seeing Joe so started the morphine and we thought it would just be a matter of time before the pain was under control. Three hours later Joe was still screaming non stop and my husband and myself were at breaking point. Consultant after consultant came in to see Joe, they all did the exactly the same leg lift test and left. No one except the A&E nurses seemed to care that Joe was still screaming and that nothing was helping him. Eventually one of the nurses said she had had enough. He had enough morphine to knock out a rugby player and she was moving Joe round to adult A&E as she said they couldn’t ignore him there. Within five minutes we were surrounded by consultants who decided that Joe needed to be put under so that they could perform a lumbar puncture. The relief when he fell asleep was overwhelming. I cannot begin to describe what it feels like to see your child in so much unbearable pain. Every time Joe ‘blacked out’ for a few seconds it was a relief only for him to wake again and continue screaming.
Joe was awake when we next saw him and surprisingly in no pain. The consultant said that maybe his brain had forgotten to turn his ‘pain switch’ off and going under had ‘reset him’. At the time I didn’t care why the pain had stopped I was just so glad it had! Joe was admitted and over the next day his pain started to return. His results had come back negative so the hospital decided to refer him to Great Ormond Street Hospital (GOSH). After spending a very surreal New Year’s Eve in hospital we were transferred on New Years Day. GOSH started him on a different mix of medication that started to work within a coupe of days. Their physio’s worked with Joe several times a day with his first goal being able to sit up for 10 seconds. They re-ran loads of tests on Joe but they were also unable to come up with a definite answer. They explained that unfortunately as it was 5 weeks since the Joe had injured himself, the injury could have already healed. They felt that the best course of action was to continue with the medication, pain killers and tens machine and to go to our local hospital to continue the physiotherapy.
We returned home after a week in GOSH with Joe’s pain under control with medication and plenty of telephone help from the Pain Team. After our experience with the local hospital I felt that attending physio with them would be a waste of time. I started searching on the internet for private physio’s and Richmond Stace came up again and again. I spoke with the GOSH Pain Team and they were happy for us to attend a private physio. I contacted Richmond and briefly explained our story and asked if he could help, ‘Of course’ was his reply. I remember putting the phone down half smiling and half in shock. Had I just heard right? He knew how he could help Joe. I was so shocked as apart from the staff on Koala ward at GOSH no one, I repeat no one had any idea what was going on with and how to deal with it.
Our first meeting with Richmond was such a positive experience, he listened and understood Joe’s pain. He explained that Joe was not the first person he had seen with that level of pain and it was something he could help us with. Joe started to improve over the weeks that we saw Richmond and we started to lower his medication. He was also managing more school that ever before and I could finally see a glimpse of the future and Joe being well. Richmond has this amazing ability to calm you, take the stress and worry out of the situation and just help you focus on the here and now. We learnt that our surroundings, state of mind, belief in what is wrong etc all have such a major impact on how we perceive pain and how we deal with it. For me, as Joe’s mum, I felt in control for the first time in months and I have no doubt that the feeling of being in control rubbed off on Joe. Listening to Richmond speak to Joe made me realise there was hope. I had truly started to question whether Joe would ever be pain free, how can no one know what caused the pain? How can they not know how to stop it? If we didn’t know what caused the pain could it happen again?
After everything that Joe had been through it had changed him. No longer was Joe my fearless boy, he was now cautious, carried himself differently and seemed different from his peers. In my opinion there is no doubt that pain changes you, makes you aware of your immortality and causes you to protect yourself when, most of the time that protection isn’t actually needed. Maybe our brains are too clever for their own good! Richmond helped Joe realise he was ok. In fact his was better than ok he was Joe again. Not Joe who screams in pain, not Joe who is fragile and unable to do much more than lie in bed but old Joe — Joe who loves school, riding his bike, playing football, going out with friends and playing his guitar. Richmond helped Joe see that and he helped him see that he can control his pain, giving Joe the belief in himself again, proving that he was not at the mercy of a painful back, destined to take painkillers and other medication for the rest of his life. The belief and the tools Richmond gave Joe changed his thought processes, enabling him to progress through his physio, lower and eventually stop his medication.
If anyone reading this is suffering with pain please, please see Richmond. Your life doesn’t have to be ruled by pain. Pain is exhausting and all consuming and it doesn’t have to be that way.