I received a letter yesterday saying it has been a year since the completion of my pain management course and inviting me on the 14th April for a review at the pain clinic, so I figured now was as good a time as any to reflect back on the past year.It ties in nicely with my blog too since I started blogging at the end of April after my course ended on the recommendation of P one of the pain psychologists.
On the course we looked at the Pain Management jigsaw that had a number of pieces all that impacted on our pain and how we were able to manage it. We also looked at our own well being and as part of that our mental well being and mood. Something which I was confident I had no issues with.
When dealing with chronic pain we always look at the pain scale 1-10, now this can be really difficult as it can be open to interpretation I did however come across this chart which is a pretty good reflection of the scale I use. With the exception of 10, when I do not need to go to the “Emergency Room” or hospital as there is nothing they can do and I will just increase my pain meds and lay up until the flare up goes.
My pain I would have described up until October 2014 was around the 4-5 mark and was controlled at that level with a combination of medication, limited hours at work and activities outside of work (including giving up all sports I used to play regularly and love). I was however pushing myself to do all the things that I thought I should be doing because it was what society dictates and if I didn’t I wasn’t contributing to life so had no purpose. This was causing me to have more regular flare ups and set backs of pain where I was laid up for days, week, or months at a 9-10. In October 2014 I hole punched too many papers and triggered a set of spasms. This became harder to get under control and coughs and sneezes became the equivalent of being kicked in the back by a horse.
I kept pushing on and on until eventually one morning I couldn’t get up, pain 10 had hit me like a brick wall. I went back to the pain clinic and the tests, scans and so on begun again to see how far my back had degenerated. The MRI scan results were not good for me my bone structure had deteriorated and this coupled with the nerve damage in my thoracic spine meant I was really suffering. We played around with my pain meds and eventually I got to go on the Pain management course that I blogged about in Part 1 Part 2 Part 3 and I realise now that Part 4 has not been written oops better do that……….
My pain now on good days and this is where it is complicated as it changes throughout the day and depending on what I am doing, but varies between a 5-8, on the bad days of which there are many and usually following a day out or doing something fun like playing with my LG for a short period of time it peaks to an 8-10. It is these peaks that make daily living so difficult. It is hard to explain how pain makes holding a conversation difficult but it really is, I lose track of the conversation, I forget what we are talking about or I drift into the pain so that it consumes me and I cannot hear what is being said.
This said 1 year on I feel in a better place and better equipped to deal with the pain and how it makes me feel and affects my life.
Exercise and Chronic Pain
I met L my physio at the 10 week programme, I over did the exercises and pushed myself too much, I wanted to be the competitive pre-accident Seachy and not be out done by anyone else in the group. I quickly learnt this was stupid and caused me more pain. The people on the course and L laughed and joked with me and made me realise I have to work at post-accident Seachy and making him the best he can be. My chapter 1 was beginning but it could be someones chapter 12. I now have a set of stretches I do a few repetitions a few times a day, daily, and some hydrotherapy exercises I do. I have learnt not to push myself too hard and on my really bad days to only do what is necessary and not beat myself up for not doing things. I also do Yoga designed for disabled people and pain sufferers once a week, little steps!
Occupational Health Assistance
This was and still is something I have struggled with. Having for many years been told I should use a variety of aids to help make my life easier and stubbornly refused I have now embraced them. It has got to the point that I have even blogged saying how much I miss them when we are out or spend a few nights away I know a real convert. The list seems never-ending and we are about to go through more restorations to continue to help. I have a perching stool in my Kitchen and we need to redesign this when money allows so that we can have an eye level cooker. Not only do I have a custom built wheelchair, a mobility scooter and crutches for when I am out of the house I now have a rise and recline chair/bed in the lounge, a profiling bed and on the 4th April our 3 week bathroom conversion to change it from a shower room to a wheelchair friendly floor level shower, this along with our motability car means my wife’s last year of wages have gone on a number of adjustments that allow me to get in and out of a chair and bed without significantly increasing pain, to allow us to have some fun times out and about as a family. The perching stool allows me to pace and chop a few veg to chuck into the slow cooker I asked for as a birthday present. Being disabled certainly isn’t cheap and I’m a firm believer having seen our savings all but vanish in the past two years that these things should be funded. If further government cuts see my wife lose her job we have nothing to pay our bills having spent on things I needed………..this is however another debate. I have used all resources available to me. community occupational therapists, Adult Social Services and anyone else recommended to me. I swallowed my pride and have benefitted.
We reviewed all the medication I have taken over the past 13 years, changed the ones that were not benefiting me or causing the worse side effects. Tried cutting down some gradually to see what impact this had on pain v’s cognitive benefits and having worked tirelessly with the pain clinic and at great pain and issues to myself we have settle on a combination of opioids and other medications to help reduce my pain to around a 6-7 (my new normality), help increase my sleep to more than 3 hours a night if possible and reduce some of the spasms I frequently suffer.
Mindfulness/Wellbeing (Thoughts and Feelings)
I scoffed at this before the course started, and truth be told, the first couple of times it was mentioned I didn’t really pay full attention. I was ok, didn’t need help. This is perhaps one of the two biggest mistakes I have made in the last decade. I had focused so much time on my pain and the impact on my life that I had forgotten what was important to me. I’d forgotten how to be truly happy with life, yes I smiled, and laughed and joked but I also lied a lot. I pretended things were ok when they were not, I pushed myself to breaking point and sure enough on the course I broke. I didn’t need psychologists, ha yeah right my sessions with Dr P and Dr B really were to some respects lifesavers to me, I have blogged about some of these sessions before so will leave it there. Mindfulness helps me to contain much of the anger I have inside me trying to break out sometimes, it comes from the frustrations of daily life, not being able to do what you want when you want, having to pace everything and not be spontaneous. Having to rest up to go out, then rest up once you get home again. Having had my car accident when I was 24 I have now spent more than a third of my life like this and I was angry with the world. I have been better prepared to deal with my own thoughts and feelings. Yes I do still have bad days, low days, woe is me days but these are fewer in number than at any other point in the past 14 years. I do not hate my life, myself or the world anymore.
Family and Friends
The biggest problem I have had with the support is that for years I have tried to protect my support network from the pain by lying to them, I’d not talked about the pain meds and issues/symptoms/side effects, I’d pushed on not admitting when enough was enough and I’d done it all in some bizarre thought of protecting them from having to experience what I was every day. The truth I came to realise was that they all knew, they were there every time it blew up in my face and they were there to support me. It’s not easy having to ask for help to shower, dry and dress everyday or having someone else cook your meals, it is not easy not being able to do things that so many (including me) take for granted. It is however life. There are people worse off than me, but the doesn’t make me feel any better, I want to do what I want, unfortunately that means relying heavily on friends and family. I feel like a burden and at times am a bit of a stubborn old git but that’s the determination to succeed that has enabled me to achieve so much in spite of the pain. It is the person in me willing to stand up for what is wrong to fight for the rights of disabled people in my home town and I am thankful for that. It was great that one session those closest to us had the chance to come in and listen to some of the specialists separate to us, it has helped my wife and us to understand me a little better. I had to be honest with family and friends or famiends as I now call them, some have left my life others have become more prominent in it, I accept this and try not to let it wind me up or piss me off, it is their problem if they cannot understand my life not mine, and I do not need to make excuses for them or waste time and energy on these type of relationships.
Pacing, goal setting & activity
This was a struggle at first, I mean how do you pace life with the unpredictability of pain, a young child and the struggles of work and every day life. The reality is to some extent I was pacing already, not in 15 minute intervals but in the preparation and planning of our everyday life. The best things to get out of this was that pacing can work on many levels from slowly peeling and chopping veg over the space of a number of hours (or days) to planning rest days when we go away or have a day out or family event. It was also about setting small goals that were achievable giving us a sense of worth rather than those huge tasks that seemed insurmountable. I now each day look for a positive experience, I try to ensure I make and hit one goal each day, even if it is as simple as doing my stretches/exercises each day and in the hot tub, making sure I do my 5 minutes walking whether this is in one very slow, short distance in one hit or via 15 very short and very slow walks. The important thing is doing it. Having my base level of activity. As part of my research I came across the Spoon Theory – it was a brilliant way of understanding my own crashes but even greater than that being able to explain them to others.
I have over the past year learnt that I need time to relax, to do things I enjoy, be that play with my LG, my family, our friends or read a book. I learnt not to feel guilty about doing these things, my blog at the end of each day really helps me to relax, get thing off my chest and put the day into perspective with finding daily positives.
This surprised me, for the first time in dealing with my pain I had a group of specialists talking to me about everyday life, acknowledging that the best laid plans and pacing can go tits up because that’s life. If my LG is ill and my sleep becomes non existent of course my pain spikes, I’m not going to tell a 3 year old to do one though. I was told to embrace these mini challenges to let every day life happen and to start enjoying it and the challenges. Even further than this though I was taught yes at the age of 30 something that enjoyment, fun and laughter in life was allowed. It didn’t mean my pain had gone, it just meant that the bad days are a little brighter with laughter in them. It taught me to make plans, not to feel guilty if I had to break them and to start leaving my home again. I even went out on my own on my scooter last week into my home town. It was invigorating with the wind blowing through my hair (well over my scalp) as I trundled along at 3mph on my mobility scooter.
First aid, planning for setbacks and flare ups
Bizarrely enough at the time I thought why do we do this, if we do not know when the set backs or flare ups are coming how do we plan for them. Well funnily enough I was not a know it all nor was I someone with all the answers. I realised that I needed help and planning for the inevitable just meant there was a plan of action in place. There is always a frozen meal or tuna pasta and sweetcorn dinner option if I am in pain and need some quick help. I know my own exercise baseline, and I know if the flare up is really bad that doing nothing isn’t a bad thing.
Educating about Chronic Pain
I learnt all about pain receptors, how chronic pain differs from acute pain and the way my body reacts to pain. The opening and closing of gateways to the brain, I also learnt about how this links into the way that my pain causes me difficulty concentrating. I have the knowledge now to to understand what my body is saying to me and predicting a bit better how the day is going to be. I do not always get it right but I can predict my days better.
Maintaining it all post course completion
This was perhaps the biggest element of the course, and one of the best things I got from my course was that I am not alone, there are others living with constant pain. True we all have different conditions and different amounts of pain but we also have the same issues to overcome each day, we understand the highs and lows and daily life. We understand how life, family and illness affect us and we have a support network of each other to help us when we need it. We also have the Norfolk Against Chronic Pain support group, set up by Dan the Man and we have all benefitted from our monthly meetings and the things that have occurred from the, whether that has been the exercise classes, listening to others, going out together helping one another, making new friends, having our families meet each other and we are now entering a new phase of expanding our support for others, an exciting new chapter in our life hopefully aiming to help more. Guest speakers, fundraising and having a purpose helps us all, especially those unable to work, you get a sense of achievement from contributing to society.
I apologise this has become such a big post but it is needed (well by me it was) pain I am not a great deal better than where I was a year ago, however and most importantly I am happier than where I was a year ago. For years I thought acceptance was giving in, throwing in the towel and festering – what I realise is that acceptance is the first step towards regaining control of your life. Yes each time I find something I cannot do anymore it is like a grieving process this means I am in a circle of acceptance.and grieving however I am now in control of this. It isn’t such a big issue it is life. You get on with living it the best you can.I have my famiends and my spoonies and I am happier than I have been in a long time.
I feel able to take on some volunteer work, (yes I am still devastated about losing my job but I am able to accept that it was for the best), things still annoy me, little things make me erupt and bad days mean I am like a bear with a sore back but I am me. I am unique and I am worthy of my place on this earth. I can only push myself as hard as I can and I am happier with that. I laugh when I fall, I laugh when I chuck drink other myself but I laugh with others and not at myself with loathing now. I no longer permanently hate myself, yes I hate my pain and the impact it has on my life, and days I hate what I cannot do and what my family miss out on, I hate that I cannot do more and I hate that their is no magic wand but it is not all doom and gloom. There is light, there is fun, there is strength and there is support. I do not have all the answers, I do not stop pain and I cannot prevent flare ups but I am prepared for what life throws at me and I have the right people around me supporting me on this journey.
Pain affects everything I do in life, but it doesn’t stop me having a life anymore. This is the biggest step forward I have made in the past year.