Tomorrow is my 6 month review having established a base amount of Methadone used as the main opiate for controlling my chronic pain. Having recently had my 12 month review after the 10 week Pain Management Programme it is hoped that I will be discharged from the care of the pain management clinic. Whenever I say this to people that do not know me they think that this is a great positive step. Being discharged means I’m all better. COMPUTER SAYS NO! Being discharged basically means we have reached that point again where my current level of pain and mobility is settled down to it’s new normal level, and that there is no more at this time that the Pain Management Clinic can do for me. Now this is not a dig or moan at the clinic, living with chronic pain means that for most of the time you have to self manage your condition. For many of us there is no cure, magic wand or wonder drug (currently available) that can do this for us.
So the pain clinic gives us a number of tools that we can use to help manage our lives. My new pain base level I would score as a 6.5-7.5 meaning on a good day my pain is so intense that it affects everything I do from going to the toilet to dressing, brushing my teeth and just sitting writing these blogs to sleeping. It is no surprise therefore that I have worked closely with them for the past 30 months and have some useful tools in coping with pain and with my life. PACING is the new word in my household, everything we do is based around this activity. It is not easy when you have a 19 year old and a 3 year old and you are trying to balance their needs ahead of your own. However when life gets in the way and pacing creates a problem then my family have accepted the inevitable spoon crash where I collapse in and out of a pain induced body shutdown.
Most recently for me, this last spell under their consultation has seen a complete medication overhaul. The result of which has seen me move on to the “special ones” and has seen me reduce the number of regular medications that I took from 8 down to 5 and the daily number of tablets down from over 45 tablets a day 25. So how does this work being in increased pain, well in a number of ways really. Firstly the strength of medications have increased but I rattle less. Secondly I have trialed each tablet being taken out to see the impact it has on my pain versus the side effects I get and I have then been able to decide which is the better way take the meds or suffer the mind numbing side affects. Being able to do this under the watchful eyes of a pain specialist and not my GP (no disrespect to her) enabled me to do it in a much more controlled environment. It has also helped me reduce some of the most addictive medications down to a measurable level. It becomes easily overlooked at a GP’s but I have had good results that I am pleased with.
There is however one funny result of this. I have as I say been prescribed Methadone as the main pain control opiate. Now when you say methadone you instantly think of heroin addicts coming off the drug and at first so did I and so do most other people. However being under the pain clinic though I was able to talk through the pros and cons of this versus Morphine especially based on my other medications and the addictive nature. I also had a pain psychologist to talk to and get my head straight and understand that if others looked at me differently it was their problem not mine. We slowly took one medication out and introduce the methadone and for a few weeks it was hell, everyday the pain was at a 10 and I just wanted to curl up in a ball and fall asleep only 2 problems I can’t curl into a ball and nor could I sleep 🙂 . Now the dose is settled I am getting back to having some resemblance of a life, albeit one drastically reduced to 3 years ago however a life it is. What is funny though is whenever I go, my wife or my mum go in to collect my prescription the staff go right that’s four on repeat and oh the “special ones”, we’ve just got to get them from the locked cupboard. It always makes us laugh they way they say “special ones” because we all know the way it sounds when I am sat their in my wheel chair! I understand why the staff say it, I mean lets face it we all know chemists are not private places and you always have your ears prick up when you see or hear something out of the ordinary it is human nature. So to hear METHADONE in my small town, when so many people know me by name but not injury and ill health (especially as I used to be very fit and managed the then only gym in the town and have an unusual but well known surname), and how the small town mentality and jungle drums would beat in a matter of seconds to have me known as a fully fledged heroin addict I fully understand that it is not said out loud. It just makes me laugh to hear them described as special, they are to me anything but special, although they are needed to balance my pain/life puzzle………….
……….watch out for further blogs regarding my life beyond the pain clinic if I do get discharged tomorrow……………..