Stalling My Car

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 our condition. We know the day-in day-out realities of living with fibromyalgia. 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 are not 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 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 sh1t 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 🙂 

Fibromyalgia: Predictably Unpredictable

‘Unexpect the expected’ was the, ahem, “catchy” tagline the GAA used to promote the Allianz Leagues in 2013. Reminiscent of the old tangle twister about Peter Piper and his pickled peppers it jarred the first couple of times I heard or saw it. What it did do though was to get people talking about the leagues and so at the end of the day that was what the GAA wanted out of the situation.  

The only thing that can be expected with any degree of certainty when living with fibromyalgia is its unpredictability. One day you’re feeling pretty decent about the world and the next there seems like there’ll never be an end to the fatigue, pain and disruption to life. In fact day-to-day is a massive timeframe, hour-to-hour is more appropriate to some of the swings in living with fibromyalgia.

It was said often, or maybe just once I’m not sure, that a week is a long time in politics. If that is in fact true, exactly how long is a week in the life of a fibro fighter? How many times can a fighter go from boom to bust in one week? Is it any wonder you’d be tired dealing with all those emotions, sensations and experiences. Looking back now I’m just surprised I was able to survive so long before the diagnosis became obvious and it severely impacted on my life.

A week ago I returned to the pub I used to work in to watch Ireland v England in the rugby. My favourite day ever working in Harry’s was also an Ireland v England match. That one was in 2007 and was the first time England came over to play in Croke Park. All expectation went out of the window that day in GAA headquarters as no one could know what was about to happen, now there was an event for which ‘Unexpect the expected’ would apply.

So I found myself in the scrum of people looking for seats last Saturday evening. Most of the family was there too but a seat for the mammy and a seat for my good self were the prime requirements. Needless to say the place was stuffed like all good match-days but it was very different not to be mucking in with the lads. I was enjoying my pints though so it was only a different experience rather than a negative one.

I really enjoyed the beer, meeting my old work colleagues and customers and hanging out with my family. An Ireland win was the only thing missing but my god what a game it was. A walk home and a takeaway rounded off my Saturday. I thought I’d suffer badly on Sunday but that wasn’t so bad. Monday and Tuesday went similarly. I had fully expected to crash and pay for my night out but I was doing ok. Even five hours in out-patients on Tuesday didn’t derail me. Maybe I’d got away with one?

Well what do you think? Does anyone with fibromyalgia reading this believe that is possible? I wish it was but every good event requires a pay-off is one truth I’ve learnt these past few years. I fully expected my payment to be taken on Monday but I got a little tease of a reprieve and that made paying my tab all the harder when it happened.

Last night I began to feel ropey, the stomach churned, the head spun, the pain grew and the fatigue finally got on top of me. I went to bed fearing this morning and lo and behold I awoke to the full blown flare and hangover I expected last week. I had planned on doing something in particular today even before last weekend’s rugby match. I was fully convinced that I’d struggle the early part of this week and feel the fresher for it today.

If you want to make God laugh, tell him your plans. Planning and arranging is a difficult task for those of us with fibromyalgia. The really big, important dates can be made even when you’re not in great shape or form but expecting that 100% of the time would be folly. And if that’s the case for the Weddings, funerals, christenings etc. what about the quiet pints, the nice meal or the party? I got suckered into believing I might be able to have it all this week and then it was whipped right out from underneath me. That is making lying on the couch talking to you guys difficult to handle but at least I’m doing that. Six months ago I might still be in bed and not on the couch so that’s progress.

It’s something to hold on to I suppose but just when I thought I could plan ahead I got a big reminder that with fibromyalgia’s unpredictability it is always important to ‘Unexpect the Expected’.