Edit: I linked this as part of an impassioned plea to save our NHS on polling day, today, but for some reason the text on the Facebook post wasn’t part of the share. I’ve copied the post at the bottom of the page for clarity.
Those of you playing along at home may have noticed the somewhat excessive delay between the first posts on this site and today’s literary offering. There are a few excuses for this ranging from moving house, starting a Masters degree, and various surgical adventures on my shoulder, but the main reason I have found it difficult to fulfil my expectations of this site is that the next logical step is to talk about the pain – and for obvious reasons this is something I have put off thinking about. Not only is it difficult to explain what the pain is like to the lucky sods who aren’t suffering with this injury, acknowledging it directly sometimes drives home the feeling of utter helplessness in the face of relentless and insidious pain. Unsurprisingly it’s easier to try and compartmentalise life with a TBPI by shoving my feelings about the pain in a big box marked ‘IGNORE THIS’.
So a quick recap. The kind of pain I have is same as amputees get: phantom pain. This is caused by the disconnect between the nerves that work my arm and my brain; between the peripheral nervous system and the central nervous system. Where the nerves were torn off the spinal cord (avulsion) the signal was disrupted and the brain interprets the resulting misfiring as pain. The awkward thing about phantom pain is trying to treat pain in a location that doesn’t really exist any more. I can’t feel my hand or most of my arm except as an ethereal outline of stabbing sensation, and according to my brain my hand is actually around the location of my elbow with a very shortened forearm. My phantom hand is always on the same plane as my actual hand but this was not the case of the first six months which was very weird. The cognitive disconnect when your arm is in a sling but your brain tells you your arm is dangling by your side is pretty strange.
Phantom pain manifests in different ways with different people but generally speaking it is more likely in TBPI than OBPI and far more likely to occur where avulsions have taken place. I think the best way to describe it that I have come across was on one of the Facebook support groups where a chap described it as having a lorry reversing back and forwards over your hand only the lorry is on fire and made of knives.
In hospital they got me to score my pain out of 10 on the good old NHS pain scale and my day-to-day maintenance level of pain on a good day is a 7.5/10 until the evening when it rises to 8-8.5/10 with a jolly 9/10 once or twice a week. Very occasionally at night I will get 10/10; those are not fun nights.
I have three main sensations that manifest. The first is the ever present burning freezing crushing pins and needles sensation across the whole of my phantom hand and forearm, which has been there every second of every day since my accident in 2014. The second is what I call ‘freezer door‘, which as it sounds is like having my hand repeatedly slammed in a refrigerated door. The freezing sensation is particularly annoying as my arm is telling me that it is literally freezing but I can’t warm it up in any way because my phantom hand doesn’t really exist. Lastly I get knives very regularly which is pretty self-explanatory. I used to get a sensation of the skin on my fingers being peeled especially around the thumb almost like when you get superglue on yourself and try and peel it off and the skin lifts with it. However that delightful feeling seems to have disappeared over the last few years.
I’ll go over the various medical options I’ve tried to control the pain in another post (and I promise it won’t be two years until I post again) but so far nothing has really helped and quite a few of the drugs I’ve tried have made things worse. There are people in the support group who have found things that will ease their pain although it will never go away. Annoyingly many of the things they suggest seem to make my pain worse because of course it does. It’s difficult to remain cheerful in the face of constant relentless agony but hopefully having an outlet to whine through will help.
That was a rather downhearted update but I’m glad it’s done and out of the way. Now I can get started on making the best out of the quality of life I have. I will finish off with something shared by Ian on the Brachial Plexus Injury Awareness Facebook group that really made me laugh:
Currently sitting in Woodend Hospital awaiting my 2nd NHS appt of the week, hoping beyond hope that the Tories get booted out and the struggling ‘cradle to the grave’ service everyone benefits from gets the attention it deserves.
In the last 5 years I’ve spent 2 months in hospital, had 8 operations, a skin graft, countless hours of physio, an amputation, post-op care, pain management attempts and every drug under the sun.
And now I’m in the cafe at the hospital and writing this has made me ugly-cry. Please, don’t say ‘I’ll never vote Labour because I don’t like an allotment dwelling pacifist with wonky teeth’, in preference to a racist, sexist coward who couldn’t give two shits about ordinary people and just wants us out of the EU before the tax-dodging laws are introduced early next year.
Someone in the US with my injury would easily have wracked up a bill of $500,000 by now with everything I’ve had on the NHS and I still need potentially 2 more operations to try and control my pain to a level where I can rejoin the working life and contribute again so others can have the same as I’ve had (although obviously I hope nobody ever goes through this hell).
Vote for the interests of those who need the NHS. A vote for the Tories is a vote for me to spend even longer with this kind of pain:
The NHS is a miracle staffed by legends, but there is only so much they can do. Don’t let it be underfunded and sold off. Please.