By Peter Boyd
Self-management is vital in dealing with and living well with any chronic condition. Each of us are the only ones who know absolutely everything about it. We know the day-in day-out realities of living with it. We know what works for us, we know what makes things worse and we know every test we’ve ever had done and how many different specialties have poked and prodded at us over the years.
We talk to our family members, we talk to our friends but most importantly we talk to the medical professionals about how our meds are or aren’t working. We tell them about the difficulty we had getting out of bed due to the muscle stiffness and we tell them about the Saturday night we had planned to go to the cinema with our mates and had to pull out at the last-minute. We make every possible effort to track our symptoms and map out the good and bad days. Once this tracking and preparation is done we do our best to then impart that information to the pro’s.
But as much as I wish it wasn’t true, they’re human too and might not hear every word we are reporting or they can be having an off day just as easily as anybody else can in their jobs. This makes self-management much more important and pretty much vital in managing our symptoms and ensuring we are living to the maximum of our new potential.
This has been brought home to me in the last few weeks. Planning things in almost military detail and consequently ensuring I’m pacing myself correctly have become my watchwords in living with fibromyalgia. I have numerous notebooks so nothing is forgotten and I love a good list. Shopping lists, to-do lists, lists of appointments; they all need to be close at hand so I don’t schedule too much on any given day or week. I’ve a limited amount of energy each day and I can’t afford to waste any of it. I hate getting myself into the position of being near the end of the day and having to choose between two tasks when I’ve only the energy for one.
That’s why pacing is so important. All tasks and commitments need to be spread out over plenty of time. I can’t go at things like a bull at a gate. I’ll never win my particular marathon by sprinting out in front and hoping to stay there. If I do that I’ll end up like so many competitors in real marathons. You know the ones that make a break for it on their own after a couple of hundred yards and intend to stay clear and win the race running alone. Unfortunately for these guys and girls, more often than not they are reeled in over time and consumed by the bunch. Some of these drop out completely but I can’t just give up on my race. Even if they can continue they may end up slipping further and further back and struggling for mile after mile just to finish their race.
I’ve learnt self-management skills and tools over the last four years since my diagnosis. I’ve made changes to my lifestyle to ensure that I’m not over-stretched and I can live my life to the fullest I possibly can. I don’t want my chances of finishing the race to be ruined by doing too much in too short a space of time. That’s the plan anyway but we’ve all heard the one about not practicing what we preach and I can do that myself at times.
I trained to deliver self-management courses and I love being able to facilitate people to learn the skills I have learned. What’s even better is when you see the transformation in someone from week one to week six as they begin to implement the tools they are living. One aspect of the courses is that we show how the participants can help each other out and provide peer-to-peer support. That even when they aren’t feeling great themselves they can still help somebody else get over an obstacle or two.
I’ve been thinking about this a lot this week. Even with my notebooks and my diaries I did a little too much this week. Even while delivering courses I wasn’t pacing myself very well and was on the hamster wheel and unable to put the brakes on. So I hope you can appreciate how much today has meant to me. A commitment I had for tonight was postponed last night. So for one day only the alarm wasn’t set for this morning. I had a great sleep, turned my legs over on my exercise bike for a bit and had a long shower and a shave and I feel like a new man and really refreshed.
It’s been a gentle reminder to make sure I look out for myself and how important a little bit of “me time” is in managing my fibromyalgia.
The reason I wanted to remind myself, and you guys reading this, about the importance of taking care of ourselves was a lovely analogy that came up in one of the course sessions I was delivering the other day. We’ve all heard the one about the importance of getting back on the horse/bicycle after falling off and the following is along that vein.
Imagine self-management is like driving a car. At the beginning you are bombarded with lots of information on the process, how things work and what you do in different situations. It’s difficult to do, you make mistakes and the only way forward is practice, practice, practice. After a time you get better and it all becomes natural and second nature. You are released to drive alone and you can continue doing so for most of the rest of your life unless some other factor emerges.
So how do you explain stalling a car 20 years after you learned to drive?
Truth is shit happens. You haven’t forgotten how to drive just because you stalled the car, despite what the angry, horn-blowing drivers behind you might think. It’s merely a little slip up and ensures that you focus on the process all the closer in the days and weeks that follow.
So metaphorically speaking I stalled my car this week but I still know how to drive and it’s time to get back on the horse!! Or words to that effect 🙂
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