Living with Chronic Pain is as I previously described a roller coaster of ups and downs, whenever you speak to your pain team they remind you of the importance of pacing and baselines and these are two very important key parts of my Pain Management Jigsaw, BUT and it is a big BUT life has this nasty habit of intervening.
Pacing is great and it has helped me no end in getting to grips with long journeys (30minutes+). For example we avoid motorways now so we can pull over whenever I need a break, and not when the service stations dictate. It does make journeys a little longer or further in distance but it does mean you get to see so much more of the UK and beautiful scenery. For example had we done the motorways last year we’d never have gone past this;
Family life and pacing, is much harder to juggle especially with my 3 yr old LG, it is crazy trying to tell the Tasmanian Devil to stop and pause for 45 minutes having just played for 15 minutes with me. It is a strange concept breaking my day into slots like that for me, so for her I totally get why every other minute I am asked the same questions. How do I pace within a family environment?, it is a very important piece of my Jigsaw Puzzle and failure to do it means my mood and wellbeing plummets but it is not easy. You have to think outside the box, for example instead of playing games on the floor we have a board that goes across my legs on my reclining chair and we play board games at my level. In the garden I sit in my wheelchair and take photos or play chase waving my arms and crutches as part off the game. We do jigsaw puzzles or arts and crafts and magazines on my chair or at the dining table and lots of role-playing as the BFG, Paw Patrol and numerous other characters. It is having to pace playing with my LG that often leads me to have the most regret and the feeling that I never do enough for her. Then when I am having a good day I want to try and push myself harder to play that little bit longer, or more but I know if I do, I will end up suffering for it in the long run.
I have spent many days determining my baseline of exercises, that is the level I can do on a bad day, I have to be disciplined on the good days not to overdo it and aggravate or inflame pain. The worse thing is that for many years my exercise was all about pushing myself harder, longer and further than the training session before, I worked out with others and I wrote exercise programmes for them. Even after I stopped working in the Leisure Industry I loved running, rowing, cycling and cross-training, taught and took part in circuits training, and loved any sport. It has been a real effort to relearn my ethos of training, not to push myself too hard and I am now understanding the importance of this change and I am looking forward to seeing a much slower progress, but I know and appreciate now that any gain in that baseline is progress.
Now we move on to the guilt, living in chronic pain is very difficult to explain to others, I have had my condition called several different things but basically what it means is that from the moment I wake to the moment I have broken sleep at night again the following evening, I have pain somewhere in my body to a differing degree. I drop things, I fall over, I use crutches or some type of wheelchair to get about and I rely heavily on the help of loved ones such as family and friends. Even to the extent of getting dressed and undressed. So I am wracked with guilt when I am having a better day and still I am relying on others. It is the worst guilt of all, the guilt of knowing you could empty that dishwasher but if you do, you might fu@k up the plans to go out at the weekend or you may have to call on someone else to help you later in the day to get you undressed for a hot tub session or to keep you awake whilst you look after your LG and so on and so forth.
The good day guilt is the worst guilt of all because you feel up to helping out, but you know if you do the consequences could be far worse. It makes you feel lazy, unhelpful, guilty for accepting help from others and not being able to help in return, guilty for not making the most of a good day. Good day guilt sucks!