Stalling My Car

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 🙂

If you would like to share your story about living with arthritis, please get in touch by emailing communications@arthritisireland.ie.

Volunteers Rewarded

“Our deepest fear is not that we are inadequate. Our deepest fear is that we are powerful beyond measure. It is our light, not our darkness that most frightens us. We ask ourselves, Who am I to be brilliant, gorgeous, talented, fabulous? Actually, who are you not to be?”

Last Thursday evening (December 5th) I stood listening to some very nice and

Naqtional Volunteer Awards

Peter with his dad John at the National Volunteer Awards.

complimentary things being said about me in front of nearly 200 people. I found it difficult to know where to look and I had slightly rosy cheeks of embarrassment. I’m a naturally shy and modest person and try not to appear boastful but in saying that I’ve no problem telling stories about my proudest days in the right circumstance.

I’ve always loved studying English whether it’s poetry, fiction, theatre or debating. There is the initial impact of the words but I love trying to strip back the layers to find out and understand the reason for the words chosen and searching for hidden meanings. Around my home I have copies of plays I studied, books of poetry which I occasionally flick through. But in my bedroom I have a framed copy of Nelson Mandela’s inauguration speech* which I see every day. The best part of studying debating, speeches and persuasive language is that although you may not agree with the stance taken it is important to recognise a well thought out and written argument.  

I heard of Nelson Mandela’s passing on Thursday evening as I was returning from an awards ceremony and my first thought was of the quote above. I never met the man but the outpouring of good sentiment, tributes and respect for the man known as Madiba are a testament to his amazing life. I’m not old enough to have been anywhere when Kennedy was shot but I’ll always remember where I was on September 11th, 2001 and now I’ll also remember December 5th, 2013.

Volunteerism celebrates all that is good in people. Everybody who volunteers gives of themselves and never to receive kudos or praise. A volunteer rarely stops and assesses the impact of what they do; they are usually too busy getting on with their voluntary endeavours. I volunteer with Arthritis Ireland because I have the condition myself and want to give back to that community. There are many reasons why people volunteer their time but there are over 14,000 volunteers in Ireland this year.

I was very fortunate to be nominated for a Volunteer Ireland Award within the Health and Disability sector. Three of us were shortlisted for that award and there were 28 other volunteers shortlisted across 9 other categories. There were 10 category awards and an overall award presented on the night but any of the 31 volunteers could have been awarded the trophies. Even I could have, although I didn’t believe that going in to the ceremony.

This brings us to Thursday and my position in front of the audience at the awards ceremony. Every volunteer was presented with a certificate for their efforts and a short biography read out to explain why everyone had been nominated. Listening to the first two categories I was humbled to hear of all that these people had achieved and done for their communities, friends or families. I began to think I didn’t belong in their company and downplay what I had done this year.

By the third category I had had time to think about the above quote, how it popped into my head I don’t know but it did. So by the time my name was called and my work this year summarised I realised that it was possible I belonged in this company and was a deserving representative of the thousands of volunteers in Ireland. I was still a little embarrassed but I’ll never be in that position again so I resolved to enjoy the moment and be proud of my achievements.

I don’t volunteer for any sort of praise or pats on the back. However while I may not be gorgeous or fabulous as the quote states, I may on occasion be brilliant or talented. It’s such an overwhelming feeling to know that people not only appreciated my efforts but went to the trouble of filling in a nomination form and voting for me. As the presenter read out my achievements I was proud and felt like a worthy representative of all volunteers and every single one deserves a thank you and appreciation.

I rarely feel the need to blow my own trumpet but I felt proud on the night, and I still do, of my contributions in helping those with arthritis and their families. The vital point about volunteers however is that they put others first and I’m sure I wasn’t the only one of the 31 volunteers present to be straight back into volunteering mode on Friday morning.

I saw on Thursday night what pride looks like. I saw it in the volunteers, I saw it in their families and friends, I saw it in the organisers of the event but I was also proud of our country as a whole. Despite what we have all gone through recently there are still so many tireless, inspirational and selfless people all over Ireland doing their bit to help others.

So keep an eye out for your neighbours this winter. Pick them up a paper, do their shopping, have a cup of tea with them, mind their kids for an hour, pick up the phone and call someone. If there is a community or group of people who might benefit from some help please do it. Do something, no matter how small you think it is.

What I heard on Thursday cheered my heart. Nobody does any volunteer work purely for the praise they will receive or what they will get from it. But I saw on Thursday that if you do something for the best of reasons, you will get so much more back in pride and self-worth. And if the praise comes as a surprise it will taste all the sweeter for it.

*I stayed in my parents’ house this weekend and I needed to look up Nelson Mandela’s speech to ensure I had the correct word order as the framed copy is in my home. I was disappointed to read on the internet that this quote is often wrongly attributed to him and in fact he never said it in his speech. Is this true? Ah well if it is I still think it’s a decent way to live but I might have to take down the copy in my room!  

From walking leaders and helpline volunteers to branch supports and Living Well self-management leaders, there are lots of ways that you can volunteer with Arthritis Ireland. If you would like to volunteer, please email community@arthritisireland.ie and we will be in touch.

Fibrofella’s 2013 Resolutions

fibromyalgia patient

Peter Boyd, Fibrofella

Did you enjoy it? Did you even notice it was going on? I paid it no heed and was much the happier for it. 2012 came like a tonne of bricks and shattered my life to pieces but thankfully it disappeared with a whimper. Fear not that there is a ’13’ in this year, it can’t be worse than 2012 so if I have anything to do with it, 2013 is going to be a blast!

I wished my family a Happy New Year very early on December 31st. It was going to be an early night for me and I didn’t want to be disturbed by too many messages come the midnight hour. As I lay in bed, and just before I slipped off to sleep, I performed a little state of the nation chat with myself. I was always told ‘that it’s no problem talking to yourself, it’s only when you are answering back that you should start to worry’. Well I’m definitely gone over to the dark side, because not only did I answer back but I was having this discussion with myself out loud.

The first fella was very loud and domineering. He shouted and roared a long list of everything that went wrong in 2012. Things he did, things he should have done, things he shouldn’t and people who had upset or offended him throughout the year.

The second fella was a lot more timid. He kept trying to answer but couldn’t find a gap in Himself’s stream of consciousness. Like the young lad in school who has to hold one arm in the air with his other hand because the teacher hasn’t got to him yet.

Item after item, awful moments of new diagnoses followed by horrible incidents, things that went wrong and not forgetting the four mornings in a row Himself walked into his kitchen wall. The wall never moved but unfortunately spatial awareness, concentration and alertness are never good first thing in the morning.

Eventually, Himself paused for breath and He had some time for rebuttal. He agreed that, yes 2012 was an Annus Horribilis but in amongst it there had been some small flickers of light and even a little happiness.

He has learned about fibromyalgia and how to manage some symptoms. He volunteers and meets people who not only understand what He is going through but also show how to live better with any illness or symptoms that raise their heads. His family feel even closer to him than before and He thinks fibro has helped. The emotional rollercoaster He is on, and the depression He is suffering from so badly now, means He talks about his emotions more with his loved ones. As a result the rest of the family do the same and the bonds are much tighter for it.

New Year is traditionally a time for resolutions but as 2012 drew to a close in bed at 10pm both He and Himself finally agreed on something. Since very few people actually stick to their resolutions, they’ve decided to go for an easy and achievable resolution. In fact they’ve already succeeded in achieving it and as a result it won’t be too hard to stick to it for the long haul.

Before I go to bed each night, I have a quick recap of my day. Both He and Himself get a chance to speak and say their piece. Himself still hollers and roars about all the bad bits of the day and all the things left undone but, once that’s done, He gets a chance to talk too. He lowers his tired arm as teacher finally gives the nod so He can begin.

He says slowly and quietly, ‘well done fella, you did some great stretching this morning before you had your breakfast. Now isn’t that one small success a much better thought to try to fall asleep on?’, and even Himself cannot argue with that.

New Year resolutions don’t have to be massive or difficult. Simple and achievable goals are much better and give just as big a sense of accomplishment. Good luck with whatever resolutions you decide upon, and from both He and Himself, may we wish you a Happy (and pain-free) 2013!

Peter Boyd is a helpline volunteer and self-management leader. Follow his blog, Fibrofella, to read more of his posts. If you would like to contribute to the Arthritis Ireland blog then please email communications@arthritisireland.ie with your topic suggestions.