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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 :) 

‘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’.

a-Lone-ly?

It’s that hallmark time of year again. I’ve never been a fan of a made up holiday which attempts to pressurize people into grand gestures of their undying love for each other. Maybe it’s easy for me to question because I’m single but why does anyone need to be reminded to show their better half how they feel? Surely to God, Allah and Buddha there are 365 days of the year to show that and not just one night.

I am single once again this February 14th so I’ll either be babysitting or at home enjoying the televisual entertainment. I don’t feel any more or less single this week than I do every other week of the year. There are times when I wish I was in a relationship and there are other times when I’m bad company and I don’t even like myself never mind have the capacity to love somebody else.

At 17 I fell madly in love, as a lot of us do. We were in the cinema one evening and in a quiet moment she whispered in my ear that she loved me. Not wanting the first time I said ‘I love you’ to be simply a reflex, I said very little in reply. Instead I waited until we left the cinema and while we were walking home told her I loved her too. Understandably, and despite my attempt at explanation, she wasn’t too pleased at me for leaving her hanging around for my reply!

We were in love with each other and I’ve been in love with a couple of other girls since. For one reason or another none of these relationships worked out in the long-term. I’ve certainly made mistakes and although I’ve never cheated on any girl, I’ve been at fault and ended relationships for the wrong reasons and at the wrong times. That’s not to say I haven’t been left heartbroken myself at other times but such is life.

These past few years have been tough health-wise and they continue to be. This has brought about feelings of intense isolation and plenty of time spent alone. Being alone and being lonely are often used as interchangeable but in my mind they are completely different. I’ve been alone many times but with the love and support of my friends and family around me I haven’t felt lonely. And yet at other times, I’ve been in the company of big groups of people and felt such an intense loneliness as to leave me bereft.

Illness, whether large or small, serious or minor can leave you feeling isolated and alone. My illness is mine and sometimes I’ve felt like I’m dealing with my health on my own. I make the decisions on my treatment, I choose what to tell the medical professionals and which doctor I see. Being alone is not always a bad thing. I don’t want to be a burden on anyone and I feel it is my responsibility to manage my condition. So sometimes not having someone at home means I’m not upsetting anyone by telling them how bad I feel.

However….

At other times I’ve felt incredibly lonely. I would give anything some days to be simply held by my girlfriend. To know without need of words that I have the support of a loved one and that I don’t need to feel lonely any longer. I’m well aware that no perfect couple or relationship exists and there are always issues to be dealt with and obstacles to try to overcome but a good relationship can do just that.

So where do I stand now? Well I’m single so I can feel alone at times when my family and friends aren’t around. Loneliness is another thing altogether. At times I certainly feel jealous of others who are in relationships and wish I could have the same joy. On the days I feel horrible, sick and a little sorry for myself though; I wonder would I have the energy and strength to take someone else’s feelings into account and not selfishly want to be alone and push her away?

Relationships, of any kind, aren’t easy alongside chronic illness. Whether you feel alone, lonely or both is just another part of it. So if you have someone special in your life show them every day and don’t wait for some arbitrary date to do so. One of these days I might be able to put that into practice myself!

Brickin’ It

Nerves are good. Nerves keep you on your toes. Nerves get the adrenaline flowing and allow you to perform at your best. That’s the theory at least.

Nerves can however waste your energy and negatively impact on you. I’ve wasted a lot of energy on nerves in the past. Nerves at the usual situations a young fella encounters growing up. Moving schools, moving to Belgium, playing big football matches, going on first dates; I’ve wasted time and energy getting nervous before all these things and plenty more besides. I was nervous before my Leaving Certificate exams and I was incredibly nervous the night before my first driving test, which is why I failed.

I never considered myself to be anxious person though. Up until relatively recently I wouldn’t have struggled with nerves any worse than butterflies in my stomach. If you are not nervous then there is the risk of taking a situation for granted and not getting the outcome you’re hoping for.

There wasn’t one situation in particular when my nervousness became anxiety but it has built up slowly through all the changes I’ve gone through over the past number of years. For a time now the smallest of issues, the smallest decisions have led to anxiety and worse still panic attacks. This has come on gradually but I’m beginning to feel like I’m moving back in the opposite direction a little, or at least I was until today that is.

This time next week I’ll be preparing for another trip to hospital. Absolutely nothing unusual there for anyone with a rheumatologic condition. And due to the inflammatory nature of my situation there’s always another system or organ that needs examining. The problem is the anxiety is building ahead of next week already.

I’m going in for a colonoscopy next week. I’ve had one before and maybe that’s where the anxiety is coming from. I know what to expect. What’s more I know what I’ll have to go through to (sorry) get to the bottom of things. Visits to doctors have been going on an upward trend recently and especially since I got out of hospital late last year. But I am worried about what this procedure will unearth.

Anyone who has had this scope done will know what the night before requires. For those of you who haven’t, I’ll try to keep this as succinct as possible. In order for the camera to get a clear view of what is going on within the gut the lining needs to be clearly visible. And in order for that to be possible a cleansing must take place the night before. This is most definitely an individual pursuit of little movement, patience and drinking a disgusting solution. As I say, I know what to expect and I’m almost as anxious about the night before as I am about the procedure itself and what might be discovered. The vital word in that sentence is ‘almost’.  

It’s 18 months since my previous scope and the reasons for the scope are even more compelling this time. The symptoms and problems I’m experiencing are at least 10 times as bad this time. I have my mothers exaggeration skills but things are a lot worse. Eighteen months ago the scope uncovered Irritable Bowel Disease (IBD). As opposed to irritable bowel syndrome which can at times be treated through dietary changes, my IBD requires medication. For a time this medication worked and kept my symptoms under control but that stopped being the case about 6/8 months ago.

The anxiety I’m feeling stems from the fact that IBD was discovered the last time but my experience at the moment leads me to believe the circumstances have got worse. Is it the case that I just need stronger medication or a change in medication? That is certainly possible and the most likely result but there is a little part of my brain which is beginning to shout louder and force me to hear what I’m trying to avoid. What if there is something worse going on? What if? What if? What if?

I wasted energy before an FAI Cup match years ago through nerves and had a stinker of a game. I have first-hand experience of allowing my thoughts and worries impact negatively. Therefore I’m attempting to keep myself in the moment and not get anxious about next week. If something new is found I’ll deal with it but until then I want to get on with the day-to-day. Anxiety and stress could be making my IBD worse so I have to try to control myself and stay calm.

I have to try because right now I’m brickin’ it and that’s not a good use of my energy.

It’s Time for New Year

Ross: “I’ve been given the gift of time!”

Chandler: “Now, that’s so funny, because last Christmas I got the gift of space. We should get them together and make a continuum.”

So what did you get for Christmas? Did you get what you wanted, did you get something you needed or were you stumped for a response to a gift you weren’t expecting?

Extra money spent doesn’t guarantee the present is going to be received well. Cost shouldn’t even enter the decision on Christmas presents, particularly for someone like me who is out of work or anybody struggling for a few quid. Thinking outside the box or finding something very appropriate to an individual becomes more important.

I got some fantastic gifts this year, the helpful suggestion list on the fridge helped! But of all the presents I saw exchanged this Christmas, three in particular stood out.

The first two were gifts I gave to people. As I’ve been out of work for so long, my budget has had to be tailored to suit my means. I get great support from my family but I can’t be careless with money. As a result, when I attended my friends’ wedding this year I had to ask my mate if he wanted me on the stag do or a present as I couldn’t do both. It was a little embarrassing bringing it up but I’ve grown a thicker skin these past two years and it had to be done.

At the wedding I was asked to do one of the readings, a reading which was very special to my friends. Therefore for Christmas I decided to hand-write and frame some of the reading to mark their big day. Money never came into it, instead I put my TIME into trying to get the gift right.

Similarly I had to try to find something for my sister and brother-in-law that wouldn’t cost a cent. I fashioned a crude gift certificate entitling them to one nights babysitting including the next morning. It’s hard for parents to truly relax when they go out because they know they’ll be up at cock-crow with their children. So if I stay over I can allow them both to have a lie on the next morning. Again money was no issue because all I’m giving them is my TIME but I think it’ll mean something to them.

Those two were gifts I gave but to receive a similar present was the highlight of my Christmas. What my god-daughter gave me meant the world to me. It was special because I know she gave up some precious time to think about what to give me and then to follow through and put it together.

I got a four-picture frame with photos of us at 3 & 14 years old, 7 & 18, 18 & 29 and a single photo of myself at the recent awards ceremony. The frame on its’ own is a good present but to trace the two of us over the years by adding in the photos made it a great present. Again I know the TIME and thought that went into the present.

“Like time, there’s always time

On my mind

So pass me by, I’ll be fine

Just give me time”

Damien Rice

Tonight people all over the world will count down to midnight and attempt to ring in the New Year in style. It’s not for me. I always wanted to work on New Year’s Eve but without work, I’ll be in bed before midnight tonight and I won’t be missing out on anything. I’m wishing for a much improved 2014 but I don’t need to be awake at 00:00 for that to happen.

I love my friends and family and I’ll continue to give my TIME to helping them out and, as clichéd as it sounds, just being there for them when they need me. Because, and this Christmas confirmed it to me again, they will be there with their TIME when I need them too.

If someone doesn’t want to be out and about at midnight tonight, maybe they are like me and just don’t like the event. However, they may also be like me and a little depressed or struggling with something. Just to be on the safe side make sure your New Year resolution is to give all those who are important to you your TIME in 2014. Just remember “I’ll be fine, just give me time.”

Happy New Year to one and all!

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 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 it 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!  

Talk to the Person Beside You

That wouldn’t work for me, I don’t really believe in it and I’ve tried it before without success.”

It’s time for a pop quiz. I’m going to give you two words and see if your first response to both was/is the above statement. Here we go;

  1. Meditation
  2. Psychotherapy

So how did you do? I know when I received both of these suggestions my response was very similar but probably not as polite as I’ve written it above.

Despite my scepticism I tried both. A once off is never enough; you’ve got to attempt it for a time and with an open-mind. So I gave meditation a shot, on my own and in groups. Unfortunately for the mindfulness community I’m not suited to it at the moment but I’ve left the door open to try again in the future.

On the other hand there’s psychotherapy. A form of therapy where I get to talk to people and it’ll help me too; well this former barman was sceptical but never misses an opportunity for a chat.  

Off I went to an interview and then a number of sessions on my own. The interview was to assess if I would be suitable for that type of therapy. The individual sessions helped me but they also assessed my suitability to join an existing group. Group was always my goal once I found out that I enjoyed this form of therapy. Why group? The answer is simple enough. School, college, football, gym instructing, lifeguarding, bar work all have something in common. They are very hard to do alone; I’ve always been part of a group.

Two examples of group therapy at work will hopefully show how much I’ve taken from the weekly sessions.

From late summer my Granddad wasn’t well and he passed away on October 4th. At that time I spoke in group about my difficulties in dealing with loss and grief. I’ve never been very good at it and it got worse these past few years when I had to deal with the grief of losing my job, my hobby I’d had since I was 4, losing my health etc. as well as the obvious grief of losing those who were close to me.

I articulated to the group that I was afraid losing Granddad would hit me very hard and I was willing him to fight on for myself as much as himself, despite this being completely unfair on him. I shared and then the group spoke and made me think of things I would not have done alone.

I’ve only been back to group the last two weeks. I missed all sessions while unwell. I was asked last night how Granddad was doing. I could’ve told the facilitator what had happened while I was off sick but didn’t think of it. I explained in a calm, rational way what had happened, how upset I’d been but also how I got through it with grief obviously but not grief which had consumed me.

Having seen me in the summer, the group didn’t expect me to be able to talk so clearly and said they were surprised by that. Truth is, and I did tell them, it was thanks to them that I was able to get through it. In talking to them and them encouraging me to speak to my family & friends and even my Granddad, they had allowed me to prepare, grieve and be emotional before the time came. His death had been de-mystified in a way and there was no shock. How I’ll deal with grief from a shock? Well, we’ll cross that bridge at that time.

This is one of my longer posts but 2 quick stories before I go.

Recently attending weddings and even doing training for new Board Members I’ve agonised over what to wear and how to look appropriate. I couldn’t care how many people I’ve to speak to or how long my speech will be, my only thought has been clothes. I said this in group this week and then had a light bulb moment. Primary school, secondary school, gym instructing, lifeguarding, every football team I played for and every bar I worked in; what have they all in common? A UNIFORM!! I’ve never chosen my own clothes so no wonder I can’t do it now!

Secondly I wanted to check I wasn’t covering a topic too similar to a previous post of mine and turned up a little oddity. Without planning it and completely by chance I found out that on November 21st last year I wrote a post entitled ‘Keep on Talking’ about how Depression hates been talked about. Is it a coincidence or something more? I’m sure my group and I will discuss that next week!

Talk to each other and take care of each other,

Fibrofella  

Let The Debate Begin

When I started writing this blog I wrote a little piece about who I am and what I would be writing about. I wanted to discuss issues related to fibromyalgia from a male perspective. Aside from the symptoms that can solely be experienced by women there haven’t been many things I’ve experienced that are different for men.

Invisibility is a massive problem for everybody, male or female. I’d imagine all of us with fibromyalgia have gone to receive test results wishing that something, anything, is found that is not too serious but will allow us to scream to everybody, “SEE! I TOLD YOU IT’S F***IN’ REAL!”

One area that a difference may arise is through the psychological impacts of fibromyalgia. I’d love to say that I understand the female mind but years of friendships and relationships have brought me no further than the fact you are strange and wonderful creatures who continue to beguile me.

On the other side is there a stereotypical male mind-set? Does that exist? I never really considered this before but I suppose I wanted to point out with this blog that even though the ratio is 90:10, men still get fibromyalgia. Some people say that it only affects men who are overly sensitive but the truth is that fibromyalgia, as I’ve said many times, is an equal opportunities employer. Whether you work on the go all day as a builder, you work in an office from 9-5 or you do little or nothing all day it doesn’t matter; anybody can develop fibromyalgia.

Fibromyalgia has had many impacts on me. It has affected my health, my finances, my relationships but the biggest change has been psychologically. I was a confident (some may say overly confident) young man who trusted his intuition and had complete faith in his decision making. Take that young man out of work for over two years and where do I find myself? I’ve lost faith in my decision making to the point where getting dressed takes an age. I check with people to make sure I’m giving a good response to questions and I’ve been humbled to the point where I  sometimes feel my opinions have no value.

For reasons unknown a feeling that I’m failing as a man has grown over the past two years. Somewhere deep inside me is the thought that everyone earns their keep with fair pay for a day’s work. I feel guilty for accepting hand outs from the government even though they are actually benefits I’m fully qualified to receive. I need that money to pay bills, buy food and every so often buy something from the ‘want’ rather than the ‘need’ list. I have to get these payments to live but they eat away at my sense of accomplishment and my self-worth.

I’ve beaten myself up for not working and earning my keep these past two years. I know I’m tiptoeing into dangerous old-fashioned gender divides and it needs a much bigger examination but I’m just starting the debate. This post is a form of talking out loud for me and if it doesn’t read as a beginning, a middle and an end, that is because I don’t know where this post will lead. I’d love to hear other people’s opinions.

Do many men read my blog? Do you continue to work with fibromyalgia? Do you struggle with self-worth while collecting state benefits? Let me know your thoughts and I’ll follow up on this topic based on those responses.

Relative Concerns

It’s over 5 weeks since I last posted something and anyone who has read my blog over the past couple of years will know that I never voluntarily cast my laptop aside and so there must be a good reason for my silence. There is a good reason but unfortunately I can’t share it with you because as of yet we still don’t know exactly what’s going on within my body of glass.

I won’t share all the details now but when the hospital tests are done with and we’ve established the causes I’ll be writing about them then. Suffice to say that sleeping for 18/19 hours per day and getting dizzy every time I stand up are not good places to start from.

The last few weeks have forced me to stay very quiet but left me in no doubt that the real world continues apace even without me contributing anything. I’ve had to cancel all my volunteering and I’ve missed friends’ parties, other friends having babies, my own election to the board of Arthritis Ireland and I still haven’t celebrated Dublin winning the All-Ireland properly. We all know that someone else takes up the slack when we’re not there but it still comes as a disappointment when the whole operation doesn’t collapse without us.

My Granddad passed away 3 weeks ago yesterday. We all knew it was coming but yet it still came as a shock if that makes sense? At 92 he’d had a great innings and had been saying for the last five years that he was “practicing for his finals”. My Granddad was a man of few words but he missed nothing. Yes he napped and dozed in front of all of us but there were times when a little hint of a smile flickered at the corners of his lips and we knew even with his eyes closed he had heard everything.

Granddad’s funeral was, while upsetting, certainly a celebration of his life and the family he gathered around himself. I hadn’t been out of sweatpants and hoodies for a couple of weeks before and I’ve been back in them since but for the day I paid my respects in suit and tie. Thankfully the readings were short though, because as I stood having done the first myself, the whole world began to spin but I knew no matter what I had to hold my feet.

My Granddad died at 92 years of age, I turned 30 this year. Could I possibly have another 62 years to live? If that’s the case then this period of a couple of months of struggling will barely merit a footnote in the story of my life. I’ve plenty of time to find out what’s going on, start the right treatment and move on with my life. My psycho-analysis must be working because I wouldn’t have been so philosophical 6 months ago!

Rest in Peace Granddad. Now that you’ve gone on the “only trip down under” you were ever genuinely going to take I’m going for a nap. It’s ok though, I’ll do something more productive at some point in the next 62 years!

Flyweight Fibrofella

I’ve only ever thrown one punch in my life. Although to even describe that as a punch is probably stretching it a little bit. That not everyone on a team gets on with everyone else should come as no surprise. While on the pitch we could dig in together and do our absolute best but off the pitch some of us didn’t have much in common and just didn’t get on.

To cut a long story short(ish), a team-mate raked down my Achilles one night in a training match and I took exception. I didn’t know how to punch but I gave it a go but it came out as more of a push than a punch and then we were separated by the rest of the team. The following weekend we actually played side-by-side, got a great win, high-fived at the final whistle and got on with things.

This weekend Dublin plays in the All-Ireland Gaelic football final. It’s our Super League Grand Final, our Superbowl or our Boxing Day Cricket in Melbourne. Tickets are like gold dust so I’ll be watching on TV but I did snare tickets to the semi-final and this was when I noticed how frustrated and angry I am at the invisible nature of my conditions and that to people in general ‘I don’t look sick’.  

A huge crowd gathered in the pubs around Croke Park very early on the day. Some were just soaking up the atmosphere while others were watching the Man Utd V Liverpool match. Space was at a premium and when I spotted a ledge to rest a drink on and lean against I moved as quick as my body would allow me.

However a Muppet* who moved after me, insisted he had been standing there all along. Normally I would just ignore that but when 3 more people joined him, started to gently push me forward and tried to insist they too had been standing there all along I flipped.

I let loose some verbals and used my body to make it as awkward for this group to stay there as possible. Inside I was urging him to hit me and start a ruck. I might have just run away but I kind of wanted him to get a few digs in so that I could say to people ‘see my bruises, see my bloody nose, that’s how I feel every single day but you can’t see it.’

I followed this theme up inside the ground too. It is the great bonus of Gaelic football and hurling that fans sit by side with opposition fans and there is always good banter back and forth. I spied a Kerry fan who was particularly biased and insulted any fan that had the temerity to ask him to move so they could get past to the toilets or the concessions.

I set about winding him with sarcastic comments, deliberately biased views on the game and barracking of the Kerry players. I never spoke directly to him but made sure he could hear every word. Eventually he got fed up and turned and told me to ‘f##k off!’ That should have been enough for me but I kept at him in the hope that he might start a fight and I again could get some visible injuries.

It’s a very strange feeling, wishing for a row to escalate because in this day and age, there are knives and guns to worry about as well as fists and boots. It’s all however just an outlet for my stress and frustration at my physical condition.

Patience is a vital component of managing fibromyalgia and/or arthritis. On lots of days that has been ok with me but the last few weeks has reminded me to be ever vigilant and catch myself before I go spoiling for a fight. As much as my hands can get hurt typing, I think telling you all about my frustration on here is a much more constructive way to deal with my frustrations and anger than spoiling for a fight.

 

*Muppet – A colloquial term for a fool, also known as a gobshite

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