Many blogs ago I started a mini series about the Pain Management Programme and I realise that I have forgotten to continue with this (the joys of meds and distraction) and last week having my 6 month review and thinking that I cannot believe 6 months had passed since I had started on my journey of enlightenment and been prompted to begin my log.
If my mind is set to do something or I am tasked by others to do something (in this instance the homework) I am more inclined to try to succeed, I know that sounds strange but having lived with chronic pain and what I perceived as persistent failures or setbacks I’d given up on my own goal setting so had nothing to succeed at. At the end of week one we had to draw a life compass, in which we wrote what we would like to be able to achieve/succeed/do more of in an ideal world (not a pain free world as we wouldn’t be there if that were likely to be achievable but would add quality to our lives), as I type this I am sat here looking at what I put in that first week, and realising how much further I need to go, but also how far I have come!. So the headings on the compass are Work/Learning, Leisure, Relationships and Health. It is something that anyone can do not just people like me, and it will give you a direction for your choices and goals that is for sure!
We also spoke in depth about conscious and unconscious acts and how important it was to look at everything we do consciously thinking about it and to see how we could make it easier on ourselves. Simple but effective changes, for me I started with getting dressed. Socks became optional extras or help from others, underwear and trousers were put on at same time and pulled up to my thighs so that I only needed to stand once to pull them up fully. I rearranged my drawers to put items I wore less lower down. Simple but I had never thought of doing it.
The next few weeks were spent getting to know each other, our pain, pacing including the way life restricts this and how you can do both short and long term pacing, the importance of regular exercise and stretching, goal setting relaxation and spending one on one time with one of the specialists. L the physio went through some exercises and tailored each to our own needs and levels (even if I wasn’t so good at listening it’s the competitor in me, you’ll hear more about that later). We were asked to think about specific goals that we’d like to achieve and then how to break them goals down into smaller more achievable goals to see the progress we were making. Week 2 we had more homework to do, to take one task we have to do and to Pace it and see what changes pacing makes! I was also tasked with finding my fitness/exercise baseline – that is what can I do on my worst days, embarrassingly this was a very short walk week 1 and being unable to do most of the exercises I had been given as I couldn’t stand unaided to do them. Disappointed but nonetheless determined to speak to L and improve slowly. I also liked the way that to a certain extent we were allowed to run the weeks. So if one topic struck a chord with one or more of the 10 people there we spent more time exploring it and less on something else.
Week three was a real game changer for me. We had a visit on the Programme it was described as “Expert Patient” this was in fact a visit from a man called Dan who had done the course I was on previously, and whom had taken it upon himself to set up a support group who meet up regularly to support one another once the course ends. They are an entirely self funding group who meet share ideas, have guest speakers etc and help people in my position. The only entry requirement if you like is that you have attended the 10 week seminars meaning you have an understanding of the topics we discuss and where they fit within the Pain Management Jigsaw. Hearing Dan speak was like he had taken my life and verbalised it to the room. A once active person now learning to cope with how his lifestyle changed after a car accident. The stages of denial, being a recluse, fighting against the pain and every specialist/consultant, the feeling of reluctance to open up to others and being sceptical of the course itself. Something changed in me that day, I’m not sure what it was but I know now for sure that something did. We were given Dan’s contact details and he invited us to join his group and to start coming to meetings etc. I’d already decided before getting home that I was going to be involved and was pleased to see some others off my course had also joined the social media group and I suddenly felt part of a team, created through pain but not defined by it, a group of people I didn’t have to force smiles with or pretend everything was ok (this said I was bricking it going to the first meeting to meet these others but so glad that I did take that step, well wheel).
Finally L gave us some more exercises to practice with and a stretchy band to add some resistance. I’d previously warned her about my competitive nature and how having previously been a manager of a Fitness Club how difficult it was to look at how little I could do, and how people older than me were able to do more. L warned me several times to take it easy and not to overdo things, along with setting me homework which involved me drinking more water – we’ll see how that panned out in part 4!