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“Where’s the coffee??!!”

So it turns out I got the preparation thing all wrong. How do I get coffee into my body? Why is there only one socket in the classroom? Where’s the coffee? Since when did a one hour 10 minute train journey become a four-hour round-trip commute?

I finally started college last week, to the sound of people saying; ‘thanks be to God/Allah/Mohammed/Thor/Oprah (insert as appropriate) he’s started. He hasn’t stopped banging on about it since he got he’s place.’ To one and all I’m sorry, I was excited. Four years of volunteering and no study or paid work had left me slightly excited at meeting people and feeding the brain again.

The difficulty was (and is, will be) how much can my brain be fed? The fibromyalgia and its’ attendant fog of confusion, lack of concentration and soul-destroying fatigue doesn’t really inspire total confidence in a great student. How much could I realistically expect my brain to learn and adapt to before it put up its’ hands like Roberto Duran crying “No mas, No Mas!”?

I had never planned on writing last week. I knew I’d be overloaded with information and new things and my brain would be doing hula hoops trying to keep up. Sudokus, crosswords and lots of reading don’t prepare you for lectures, classrooms, timetables, new faces, early trains, long days and the rest.

So I gave myself the week to simply observe what went on. I tried and succeeded in everything I needed to. I interacted in all classes right to the end of the day and to the end of the week despite the incredible fatigue. I even dragged myself along to Culture Night for good measure.

All in all it was an amazing week. I made it to every lecture, I wrote or typed every note I had to and most importantly I’ve met some brilliant people, even if nearly all of them are scarily young. (Born in 1996/1997??) Everyone has a shared interest in the humanities and there is genuine passion in everyone for different areas of what is naturally a massively broad course.

Has it all been great?

Of course not.

I’ve found a lovely coffee shop across the road selling an incredibly reasonable €2 Americano but €2 a day every day is too much. For a serious coffee fiend like me portable instant is going to have to suffice.

Last week was extremely exhausting. When I wasn’t out I was sleeping or dreaming of sleeping or wishing I was sleeping. But anyone changing their so drastically would feel the same. So I’ve cut myself a little slack. Yes I’m tired, yes I’m going to bed earlier and earlier but I will find a routine.

Fatigue and concentration levels were always going to be a problem. The third problem was going to be pain. That too hasn’t let me off the hook. We generally describe pain in one of two ways, which I know from personal experience physio’s hate. it’s either a dull ache or a sharp stabbing pain.

My way to differentiate is usually the dull ache is a tired and stiff pain from over, or under, use. Sharp pain is the joint screaming, ‘there’s a f*****g here right now, fix me fix me fix me!’

The last three weeks has been the fix me type of pain. My hands and feet, my wrists and ankles, and my shoulders are on fire. They all hurt like there’s a loose chip inside the joint grating away. My ankles are locking, giving way and sore as sh1t when they crack. Some people might give out about the classes being in the same room but I’m chuffed. Let me stretch in my chair and around my chair and I’m happy. My hands and wrists are as sore as they’ve ever been. Yes I’m writing notes in class but it’s not a massive change because I write longhand anyway so it’s not a big increase.

So the steroids were whacked up again yesterday to hopefully get me up the hill. on the plus side I did manage to achieve something remarkable without even trying. I’m already through two courses of steroids and yet I’ve lost 3-4 kilos. It always goes the other direction so I’ve no idea what I’ve done but I’ll take it.

As I said I’m in a lot of pain with my hands and feet, my migraines are saying hello with the effort of concentrating and retaining information and I’m struggling to hold my hand up to shave every day.


Through all of this is the overriding feeling of accomplishment. I’m doing something, I’m out meeting people again and already I can see some possibilities for the future opening up before me. All I need now is for my body to keep up with me.

…….and a cup of coffee

Back to School

“What do I need to bring with me? What do I do?”

“Throw on a pair of jeans and a shirt and shove a score in your back pocket to buy yourself a pint when ye all head to the pub afterwards!”

It was September 2002 and the advice for this particular fresher was very straight forward. My sister had done the first day of college and knew how it went. Everybody would be a bit nervous and fidgety but if you sat through the speeches and the inductions and the tours, ‘someone’ would suggest a quick pint and off you’d go to begin the bonding that would be needed to get you all through to your degree.

I remember wandering over to the Sidewalk pub on Cathal Brugha Street that day as one of 30 or so leisure management students. We formed a massive circle, some had pints, some had cokes, some had nothing but we were in it together. Where would your friends be, the potential girlfriends, who did you want in your group for the assignments? It was all new, it was novelty and I flew by the seat of my pants really.

Last Wednesday I had an induction for my new course which starts next week. Times have changed since 2002 and so have I. I kept a close eye on who walked into the class to join us, not so much searching for friends and girlfriends, more, hoping to see a couple of students in my ‘mature’ bracket. There are 3 of us for sure and some of the others may be older than they look although if bar work has taught me anything it is to be a pretty decent judge of ages.

It is just a completely different attitude going back to college now. I’m studying a subject I’ve a massive interest in. I want to use this course as a springboard to more study and/or a new career. There will be students in the class who have no idea what they want to do and that’s fine but I’ve got to make the most of this from the very beginning while they might just be on the piss.

I’m worried about being seen as the grumpy older fella pushing things along and asking all the questions but feck it I’m not there for them I’m there for myself so I’ll just have to get on with it. Group projects could be interesting though as I immediately found myself biting my tongue as student after student strolled in later and later. (Worst case was 45 minutes late and then we were let go after 55 minutes!) In saying that though if time management is their worst trait things won’t be all bad. I’m sure they’ll come up with a fine list about me before too long anyway!

For me the big difference between college first time around and this is preparation.

In 2002 I planned nothing and went with what I wanted to do at the time. If I wanted to skip a lecture for a pint or a game of pool I did, if I fancied a lie on I had it and if I wanted to put up off my assignment to the last minute then I did.

Today I’m older, I’m a little wiser and life has taught me a few things that may even qualify me for my title as a mature student. From the moment I started looking at college courses I’ve been preparing and planning. I’ll have to manage my home, travel, studying and coursework like everyone else. I’ll also be doing this while managing my arthritis and fibromyalgia like plenty of people do and there may well be people on my course managing their own medical conditions too.

This adds to the planning and preparation I’ve had to do to make sure I’m ready to start next week and it is going to have a massive impact on my daily timetable to make sure I get through each day healthy and ready to go again.

This doesn’t make me special in any way, as I said plenty of people do this for college or work every week, it’s just that up until about 8 weeks ago I’m not 100% confident I believed I could be one of them.

There is such a big list of symptoms encompassed by my conditions but let’s take a look at just three and how they need to be considered if I’m to excel in college and use this as a springboard to where I want to see myself.


Every morning I’ll have to be on a train earlier than I’ve woken up at any time in the last four years. I’ll have a nearly 3 hour round trip commute and a full day of college for five days a week. I’ll have to fit in managing my home, the necessary exercise to keep the physical symptoms at bay, cooking the right food and all the little jobs that I’ve had all week to do for the last while. Between the extra activity and the early starts, I will have to watch my fatigue very carefully in case I burn the candle at both ends and run out of juice in double quick time. It may be necessary for my already limited social life to take a back seat while I settle into a routine, another doable decision. The young fella who started college in 2002 would be suggesting pints after college, coffees during the day and nights out to get to know everybody but Fibrofella is a different guy and will, due to necessity, put himself first and make the sensible choices.

Concentration Problems

The fatigue could also impact my ability to concentrate on my studies. There are times with my fibromyalgia that I can’t read a newspaper report or watch a film because I can’t focus on it so if this happens with a module in college, I’m really going to struggle to keep up. By being aware of the dangers, studying something I’m really interested in and planning in as much detail as I can I’m hoping to minimize any problems I may have with concentration. Getting enough exercise and enough restful sleep will help to keep my head clear. The ability to concentrate will be vital and hopefully the practice I’ve had from writing my books and reading consistently will stand to me when it comes to my required reading and preparing assignments. One thing is for sure I won’t be able to rely on last minute sessions to finish my assignments.


Pain is a constant companion for me at the moment. It’s there all the time whether I feel good or bad. Sometimes it is in the background but sometimes it is all I can focus on. But thankfully at the moment my head is in a good place so I can carry on even when I’m in pain. Extra activity will cause more pain. If I don’t manage my fatigue well and sleep right, the pain will increase and if I can’t concentrate on the subjects or I become stressed or anxious about the situation then my pain will probably increase. Luckily though I know that these are all possibilities and so I’ll be doing everything I can not to let them happen. And if they do? Well I’ve the coping skills and management techniques prepared to get me through that too.

So here I am older, wiser and a little better prepared for what college has in store for me.

If I can do it, you can too.

2015 – A Year of Two Halves

Hi my name is Fibrofella and it’s been 12 months since my last post. I never planned to take a year off but I found myself writing mostly about Depression and the grip it had on me and not the fibromyalgia, inflammatory arthritis and physical symptoms I was managing and continue to manage each and every day.

Had I written this post at the beginning of this year, it would have centred on my ongoing battle with depression. To use the most common euphemism; I was in a very dark place. I took myself off to a relatives place in Spain in March to read a few books and write one of my own. Before I went I occasionally contemplated not coming home at all, such was my lack of hope for the future.

Just as quickly as things can snowball in a negative way, they can gain momentum in a positive way. I began first off by getting a handle on the fibromyalgia and inflammatory arthritis I’m living with. I think the correct term for that would be acceptance. A good friend of mine wrote a post about this recently ( ) and I really related to the fact that I finally stopped denying that this was part of my life but also acknowledged that it wasn’t all of my life.

From there I began to look to the future, not with the fear and dread of how bad things were going to get but with the possibilities and potential that lay before me to make something of myself. I’m in my thirties and my generation will be working until we’re 70 so I’ve got plenty of time to work and make a positive contribution. I began to research college courses and the prospect of re-training for a job that will be less physical than the jobs I’ve had before.

I’ve also had 5 years of living on an extremely restricted budget, with amazing family support it must be said, but I’ve still got my home so money is nice but it’s no longer my primary motivator for a job. Instead I’m going to do something I’m passionate about and will be good at. So I’m going back to school in September to do a history and culture course; new schoolbag, pencil case and all. I want this to be a stepping stone to further study, to a job or even possibly to continue studying and possibly even teach or lecture at some point.

You see one small step into an adult education course and the world began to open up to me. I have options, I’m making plans, I have hope and I have ambition. Just six months ago I had none of these things; I couldn’t see any future worth coming home to Ireland for.

So once I saw the possibility of returning to school becoming a reality I thought about needing a few quid for pocket money. If I’m going to be hanging around with all the kids I’m going to need coffee and beer money, not that I drink but that costs more money than a beer these days!

So I’m on the road of getting a few hours work a week just to dip my toe in the water and earn real cash money again. It’s not much but it’s more than last year and I’m not going to complain. So now I’ve a course coming up, a few quid in my pocket and a future to look forward to. And all this came from taking a look at what courses where available for people on Disability Allowance in Ireland.

All of this comes with two big provisos of course. Is my depression gone? Hell no. Will I have setbacks? Hell yes.

I still have plenty of times where in spite of positivity I get seriously depressed and uptight. Are they the normal ups and downs of life or worse? I’m not sure, I know they are tough periods to deal with but thankfully I can now recognise triggers and warning signs and I’ve learned some self-management techniques to get me through the worst. I’ve said it before that I’m a better person for the lessons I’ve learned these past 5 years so depression and anxiety is just a part of who I am.

Will I be anxious starting college? Of course but crucially everyone else is in the same boat. Am I ever nervous making a speech and leading a course? Never. Put me in a leadership position, leading a course, teaching or supervising and I’m fine. Ask me to make a speech or a presentation on the radio, on TV or to thousands in an auditorium it’s no problem. Ask me to sit in a room with a group of people I went to school or college with, played football with or kind of know? Then we have a problem. What if we run out of things to talk about? What if there’s silence? What if it’s awkward and uncomfortable? What if they don’t like me now? Or I don’t like them?

I know from the growth I’ve made that this is about control and authority in situations and my role within those situations but they still terrify me. Plus when you catch up with old friends that’s exactly what you do, catch up. Married? Seeing any one? Kids? Job? House? Own or rent? Car? Chances of promotion? Career path?

My answers to the above; No, no, no, no, apartment, own, no, no, starting at bottom again.

But who really cares? Nobody really, I’ll walk in on my first day of school and introduce myself. I’ll have to say no more about what I’ve been through in the last few years if I don’t want to and I’ve a clean slate to start with. Who knows who I’ll meet through this course, it could lead to jobs, other courses, relationships, kids the lot or it might lead to none of these. But right this second the not knowing is exciting.

I spent months and years not knowing what was wrong with my body and hated it but now I’ve the same sensation of not knowing but the emotion is one of excitement and positivity. Our minds are so powerful that we can take the same information, process it and have two reactions that are at completely opposite ends of a spectrum.

I’ll have setbacks over the next few months without question. The pain and fatigue are constant companions as we speak so there are going to be days when they get worse and I feel overwhelmed. This would happen for anyone changing from not having too much of a routine to a full-time course. This may be exaggerated for me but it’s just a part of the process and understanding that a setback doesn’t throw me back to the bottom of the mountain is important. I’ll just go through the steps I’ve learnt that get me out of that bad day and go again from the same point on the journey without having slipped backwards.

Going back to the classroom is going to be a challenge but it’s an achievable goal for me at this point and I’m going to make it work. If it doesn’t there are other plans there but I don’t believe I’ll need them.

It was important for me to write this for anyone who has been diagnosed with fibromyalgia and believed that Depression is the end game. It’s not. It may be a point on your journey but when people say there is light at the end of the tunnel I now know exactly what they mean.

If throwing a pebble in a lake was my looking at courses online, then the ripples caused include going back to school, part-time work, reducing isolation, meeting people, improving job prospects, more self-worth and excitement for the future.

RIP Mr. Williams

Who am I to think I can add anything relevant, new or eloquent to the tributes, obituaries and respect that have flowed following the sad news of the death of Robin Williams this week? The short answer is that’s impossible. I have seen Jimmy Fallon and Adam Hills paying tribute to a great actor and star. I have read messages from Jason Manford in particular,and others too, about the curse of depression and the impacts it can have on individuals and their families and friends.

I have never been one for hero-worship. I’ve watched sportsmen/women, actors and musicians and admired their talent and achievements like lots of people. Have I ever felt the urge to meet them or get their autograph? Not especially. They’re just human like me but they are good at something I’m not and have a public profile. If I was on a night out and met any of these people I’d love to have a chat with them and see what they’re like but if they’re knobheads, they’re knobheads! Why would I spend any time with people I don’t get on with just because they are famous? I wouldn’t.

Because of this mind-set, I’ve been surprised at my own reaction to the news of Robin Williams passing this week. In my humble opinion he is a wonderful actor and genuinely funny man who doesn’t need a script to be funny. I say is because his performances will live on for a long time in our memories. I grew up alongside some of his great films. From Aladdin to Patch Adams, Dead Poets Society to One Hour Photo, Hook to Mrs. Doubtfire, Good Will Hunting to, my personal favourite, Good Morning Vietnam I have laughed, I have cried, I have enjoyed and I’ve been impressed by a wonderfully talented man.

However if I was to be asked, is he a hero of mine? I would’ve had said no but I can appreciate his greatness. The reason his passing has resonated with me is the fact that he battled and fought with Depression for a long time, perhaps right up to his last moments. Depression is my common link to this great man and to so many people, famous and unknown around the world who fight Depression every day of their lives.

I would be lying if I said I never think about suicide during my darkest days. These thoughts can be fleeting or they can last a little while. Either way they are thoughts; no bigger or smaller than dreaming of winning the World Cup or what will tomorrow bring. I’m not being facetious about the battle I fight against Depression, I am merely admitting it is a part of my everyday life and accepting that it is always there. I think it is better to acknowledge my darkest thoughts rather than denying them and hiding from them which allow those thoughts to fester and possibly became greater than I can cope with.

This summer my Depression has been greater than it has been for a long time. It has coincided with the worst period of arthritis and auto-immune illness I’ve ever had. Of course they are linked as I’ve felt even more restricted than ever and so motivation and self-worth have taken a battering.

I was asked a question on Wednesday. ‘Which is harder to live with the physical or the mental problems?’ My instinctive reaction was to say ‘physical, of course. I can’t work, I can’t train as hard as I like and I don’t know how bad I’ll be in years to come.’ But as I spoke and then considered the mental difficulties I have. The depression I battle each day and the 2 traumatic brain injuries I’ve experienced in my life (meningitis at 17 and TV landing on my head at 25) have had and continue to have just as much impact on my life.

I take medication to help manage my Depression. I exercise and I eat well to manage my Depression. I talk about my life to manage my Depression.

This last point is very important. Depression hates being talked about and challenged head on. I take part in Psychoanalysis treatment each week where every little detail of life and every emotion and feeling is open to discussion. Talk, talk, talk!

I’ve said it before and I’ll continue saying it; if you have a sore leg you go to the doctor so if you have a sore head please go and see a doctor too. Tell them what’s going on your life, talk about your emotions. Reach out to your family and friends because chances are they’re going through or have gone through their own shit at some stage.

If someone comes bouncing into work or into your home you might say ‘you look in good form today, why’s that?’ If that same person comes into work or your house and doesn’t look in good form ask them why too. They may just have been waiting for someone to ask and listen to them.

So let us all remember Robin Williams and the wonderful films and characters he has left behind but let’s take something else too. So many people live with Depression or difficulties in their mental health, therefore let’s keep the conversation going because as I’ve been told many times;


Depression Hates Being Talked About   

I wrote the speech below for the Arthritis Ireland National Volunteer Conference 2014. I delivered the speech and I think it went down well with all the different volunteers gathered in the room. Reading it you may believe that I’ve exaggerated some of the emotion attached to living with arthritis and fibromyalgia but I know exactly where I am at the moment. I wrote the speech as preparation but when it came to the time I just spoke honestly, from my heart. I didn’t read the speech and I didn’t sugar coat anything. I’m having a tough time getting motivated to even get out of bed. Volunteering has helped in the past to drag me out of a slump and I’m hoping it will do the same now but who knows what tomorrow will bring.

You may have noticed I haven’t posted anything on here lately or you may have been glad of the break. Either way I’m so down that I’ve been struggling to find anything to write and post about. This seemed like an easy way to post again and a good way of showing myself that even in my darkest times I’ve helped others and I’m trying desperately to hold on to this thought. I know I can help others, I know others help me and I know I’ve great support around me.

I just don’t know that I know it, you know what I mean?

“This time ten years ago I was enjoying one of the best years of my life. I was just shy of my 21st birthday, ¾ through my Leisure Management degree, working as a lifeguard and Fitness Instructor in the Gleneagles Hotel in Scotland. Golf fans will know it is where the Ryder Cup will be held this September. If you’ve never heard of it; it is a 5star plus luxury resort hotel. Basically it’s far too prestigious a place for a Dub from the north side to be working!

I was in a serious (or as serious as it can be at 20!) relationship with a beautiful young woman and had the prospect of earning my semi-professional football contract with Dublin City on my return to Ireland. I had overcome meningitis and 2 cruciate knee ligament operations in the previous 3 years but I was on the up and the future looked very bright.

Flash-forward to 2010 and I found myself in an altogether more negative situation. I was falling asleep on the taps of the bar I was working in. I was unable to lift a case of beer or a keg. I limped around behind the counter because of the pain in my knee/hip/shoulder/ankle/wrist/the lot. I had already adjusted my 2004 plan to owning or managing a pub while playing part-time football and raising a family in the home I bought in 2008.

Eventually I was diagnosed with fibromyalgia and rheumatoid arthritis. I have Raynaud’s and I have plenty of other auto-immune conditions co-existing with the RA.

My football career was the first to go. Who knows what I could have achieved, if anything? But to be robbed of the opportunity to even try? Jesus that hurt. My job went next. “Take a couple of weeks off to rest and recuperate and we’ll see what happens.” That’s what my manager said to me in May 2011 not realising I wouldn’t work another day in paid employment since and I’ll never, ever work at the physical, active jobs I loved and was good at.

Next to leave was my girlfriend. Well partly leave and partly I pushed her away. I didn’t know what was happening to me and how long it might go on for. I felt I was becoming a burden and I wasn’t myself. I was anxious, irritable, angry and irrational. I feel guilty for pushing away the potential support, support which I crave now. Distance started to come between my friends and family too. I felt I should be able to cope with my own situation personally but even when that clearly wasn’t working, I didn’t ask for any help and support. Of those I didn’t push away, some got pissed off with my cancelling plans, not doing all that I used to and generally being unreliable.  

I spent about 2 years constantly having my health, my lifestyle, my hobbies, my social life and my finances chipped away. I never grieved properly for any of these losses. As this carried on, my self-confidence, self-worth, happiness and quality of life plummeted. Meanwhile my anxiety, fear, stress and clinical depression went off the scales. All of this impacted on my disease activity and I was trapped in the Pain/fatigue cycle we learn so much about in the self-management course.

It was at this point that Arthritis Ireland and volunteering stepped in to rescue me.

I took part in a Living Well With Arthritis course in September 2011. I met others in the same position as me for the first time. They understood exactly what I go through and that acceptance was priceless. Seeing how the participants and the facilitators lived with arthritis and were still able to help each other by support, tips and information was a massive inspiration.

I saw that people can be reached and supported in their darkest hour by someone who may be going through difficult times themselves. My journey towards getting a handle on chronic illness and providing help and support to others began that night in 2011.

Having met others who understood and related to my situation, all I wanted to do was meet more similar people and start paying forward the help I had received. So following on from my Living Well course I got involved with the Young Arthritis Network. I contacted Arthritis Ireland about the helpline and trained to volunteer on that service. I’ve trained to be a Living Well leader and a walking group leader. I’ve delivered lots of courses and individual sessions in the past few years and hopefully I’ve helped people the way I was helped back then.

I also help out at as many Juvenile and Young Arthritis events as I can. I’ve played Santa Claus and I’ve been Superman. I’ve floored myself trying to keep up with over 20 teenagers for a weekend and I’ve been told in whole-hearted honesty that I look 47!

 I’ve seen on numerous occasions through my various volunteering roles how grateful people can be to get some information and support. Even when I’m going through a rough patch I can still help people and that’s an amazing feeling.

I live with Depression and mental health as much as my physical health on a daily basis. Everybody has ups and downs in their lives. Everybody has their shit to deal with; financial, health, relationships, loss; all of us have something to cope with. I’ve experienced difficulties in all these areas and others as a consequence of my arthritis and fibromyalgia and I get overwhelmed regularly.

But no matter how bad I feel; if I answer a call/email on the helpline or help out at an event I can get a massive boost. Hearing someone say thank you for something as clichéd as ‘just being there’ is priceless. It is no exaggeration to say that the self-worth and satisfaction that can bring has returned me from some very dark holes and feelings of despair.

Volunteering has been my saviour since the last day I was in paid employment. It gives me a sense of purpose and a reason to get out of bed. It continues to restore my self-worth and confidence in my abilities. I feel guilty at times when I have to take payments and other benefits even though I’m perfectly entitled to them. So I view my volunteering as a type of job. It is what I do to ‘earn’ my disability allowance.

While helping my mental health, it similarly helps with disease management. Volunteering and interacting with people of all ages living with arthritis inspires me, motivates me and offers a sense of perspective in the world around me.

Most recently my volunteering has brought me on to the board of Arthritis Ireland. I feel privileged to represent arthritis patients in this capacity and to learn all about the advocacy, research and hard work being put in on our behalf to improve the lot of anyone living with arthritis. In the last few weeks we’ve seen a real example of this at work with the pressure brought to bear over the issue of discretionary medical cards.

Volunteering in my opinion is never done for kudos or for praise. It is done for many reasons but they are predominantly selfless. I’ve spent as much time as possible over the past few years helping others and volunteering on their behalf and it is a fantastic bonus that a by-product of this is that I’ve been able to help myself at the same time.

I won’t lie though, if praise does come your way for volunteering then bloody well enjoy it. I was nominated for the volunteer of the year award in the Health and Disability sector at the Volunteer Ireland awards last December. I was embarrassed because I’d never gone looking for praise for my volunteering but it felt even better coming as a complete surprise. I talked it down but as the ceremony got closer my old competitive spirit kicked in. This was not a competition I’d entered or dreamt about winning but once in the shortlist of 3 I wanted to win.

I didn’t win.

I was merely there representing myself and my family. I was representing Arthritis Ireland. I was representing each and every one of us living with arthritis. I was representing every person that goes out of their way to volunteer their time, energy and anything else they can think of.

My sister sent me a message the day after the awards ceremony. “Congratulations on making the shortlist and as a result being in the top 0.22% of volunteers in Ireland.” Who would have thought that was possible when I took the first tentative step towards living well with my arthritis? Certainly not this guy, but one step at a time anything is possible isn’t it?

So whatever you do to volunteer; whether it is joining a committee, organising an event, shaking a bucket or doing a sky dive then well done. We’ll only get where we want to go by working together, one step at a time.

Thank you for listening, enjoy your evening and let’s continue to support each other on our collective journey.


Long-sleeve jerseys. Under armour. Double socks. Wintergreen/Deep Heat. Shouting Players. Drill-sergeant managers. Sodden bog pitches. Slowing passes. Heavy boots. Training your guts out. Scalding, stinging showers.

I never played football for these memories. My first thought of my football career is not of the filthy winter nights spent training in the dark on a hill. It is not of the St. Stephens morning session in 3 inches of snow. Instead my mind wanders to the first few weeks in April when the clocks have just gone forward. 

The longer evenings allow for matches to be played in daylight. There’s just enough time for a quick pre-match between school, college or work before it’s time to meet up. We all train on those filthy nights to put the miles in our legs for those precious night matches. And if you managed to get the ground staff to wet the pitch and allow for the ball to zip around at pace, well that was a brilliant bonus. When I look back at my football life this is what I remember.

Smelly, sweaty jerseys. Stinking socks. Clean boots. Shouting players. Sun-bathing spectators. Dewy pitches. Zipping passes. Bursting nets. Winning matches. Winning medals. Long, cool showers.

Last weekend I went to watch my brothers team play and in a single moment all those wonderful memories came flooding back. It was warm, but not too warm, sunny, clear and had been dry for a few days. It was shorts weather, it was football weather. But being an ex player it was also tracksuit top weather to keep warm.

As the match ball went out of play beside me, I suddenly found myself moving towards it. A little Cruyff turn and I had the ball under control and was turning away from the imaginary defender. I was in Mobhi Road again, fighting off the midges and just about to bury the ball into the back of the net. “Don’t kick that ball back on the pitch, the ref has the replacement on!” The linesman’s voice pulled me back out of daydream instantly.

As I watched the match I kept the ball at my feet and enjoyed the feeling of being reunited with a football after a few years. Then my chance came for genuine involvement in the proceedings. As the replacement ball flew into the car park after a wayward shot the opposition goalkeeper was looking for the match ball to be returned. Again without thinking and in pure instinct, I got the ball out of my feet and pinged it straight to the spot he was standing. It could just as easily have joined its mate in the car park but the pass was sweet as a nut and anyone would have sworn I was still playing.

It felt great but unfortunately the enjoyment lasted as long as a piece of Easter egg I ate later that afternoon. The buzz, the memories, the sights, sounds and smells all came flooding back. Then just as quickly I was consumed by negative emotions and reminded that I don’t play football anymore, that I’ll never play a match on a Spring evening and I’ll never enjoy the banter of a changing room again.  

I loved playing football. I loved feeling fit. I loved competing. I loved winning.

Going up against my fibromyalgia and the rest, I’ll never completely beat it but if I can keep myself relatively fit I might be able to enjoy more times like last Sunday when, just for a moment, I remember what it feels like to pull on the boots and play in a big game on a warm Spring evening. 

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’.


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.


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.


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