Silver Linings

Quick question; what were you doing last Tuesday? Don’t worry if you don’t know or can’t remember. Those of you who can remember, what were you doing four Tuesdays ago? I have no idea what I was doing and whether you know or not is not the point of this piece. For those of you with good memories so far, one last question, what were you doing 365 days ago?

If it was your birthday, anniversary or other significant date then you are disqualified, anybody else know the answer? Sometimes I can’t remember what I did last Friday but I will never forget Tuesday May 31st, 2011. The memories of that day aren’t good so I think I’ll have to get married on that date to override the bad associations that day has for me!:)

I’m not trying to make too big a deal of today but I do think it’s important for me to acknowledge what happened and hopefully continue to move forward. I already had a diagnosis of fibromyalgia but I was still working and getting on with my life as best as I could this time last year. As a result of pushing myself too hard, I had a fairly serious seizure (what seizure isn’t serious?) 365 days ago.

It happened in the bar while I was on duty and not only did I scare the crap out of myself, I did the same to the other barmen and the owner who was also there. If I do something wrong, I make sure I do it right! A couple of people with fibromyalgia who I have met since then, have said that they have also had some seizures but it doesn’t seem to be an overly common symptom of fibro but maybe you know different?

I had two seizures in 3 months last year but the first one 365 days ago really scared me.  When my mates told me afterwards that my eyes had rolled back in my head and I was unresponsive, I realised how awful it must have been for them. Strangely enough I didn’t notice that at the time, I had bigger things on my mind at the time like an inability to turn my head or speak.

As I said I don’t think this is too common with fibro fighters but if it is then I know what you guys are going through. I had very little knowledge of fibro before this day last year but ever since I have devoured information and research pieces on fibro to educate myself on what is happening to my body. I have a much better understanding of fibro now but every single day throws up a new challenge or obstacle to be overcome and, no more than in life generally, we have to keep evolving and learning about ourselves and the world around us.

Life has changed immeasurably in the last 365 days. Writing this piece today it feels like only yesterday but I know in some of my darker times in the past year, a day has felt like an eternity of pain and suffering. Pain and fatigue are massive issues but the rollercoaster of emotions we put our bodies through can’t be forgotten either.

I think I’m actually a better person now than I was a year ago before being humbled by the effects of fibro. If there is a silver lining to be found then that has to be it. I have always felt close to my immediate and extended family but fibro has given us the opportunity to share our feelings and emotions better than ever before. My friends and colleagues have stood up and helped me immeasurably and in allowing them to support me I have become closer to them too.

Then there are my new friends. Building a network of people around me who understand exactly what I’m going through and have been there themselves has been fantastic. It’s sad to see so many people, particularly around my age and younger, going through difficulties but at least by meeting each other we all now know we are not alone.

I started off this piece feeling pretty down about today (I know it’s only the 29th but the 31st was a Tuesday last year) but I think I’m changing my view on it the more I write. In the past year I have learnt about myself, learnt about life, learnt about overcoming difficulties, learnt about welcoming the support and help of others, in fact I have probably learnt more about myself as a person in the last year than any single year before.

Tuesday May 31st, 2011 was a nightmare day for everyone who was involved. It stopped me in my tracks and forced me to pay more attention to what was going on in my body. I learnt tips and tools to help me out physically but thankfully I’ve had an open mind and though it’s still a daily struggle, I have grown as a person in the last year.

As silver linings go, I think that’s pretty fecking good!

Is My Name On It?

Cup final weekend has rolled around again and the excitement is beginning to build. There is something special about playing, watching or attending a cup final. Knowing that your whole seasons’ effort has come down to one match adds a little pressure but you’ve got to enjoy it a little bit as well. In saying that, if anyone had said to me to enjoy a cup final when I was playing, my response would always have been, ‘there’s only one way I’m going to enjoy it and that’s if we win’.

I was lucky enough to play in numerous finals over my years of playing football. I won more than my fair share but I did lose a couple too. Winning a cup final, lifting the cup and receiving your medal are great feelings. You’re provided with something tangible that no one can take away. The league is won by the best team because the league table doesn’t lie but in a cup match there is no second chance so you need to play well, be lucky or both to get through each round.

Playing in cup finals was easy because I could, to some extent, have some control over proceedings. Watching is another animal. I’ve gone to watch my brother and my friends play in finals and that is tough because you want them to win so badly but there’s nothing you can do about it. The easiest finals to attend are those with two good teams playing and having no link to either side. They’re easy because you can live vicariously on their nerves, excitement etc. without going through any turmoil yourself.

Up until last year I was working for the big finals when they came around. The Heineken Cup and the Champions League finals are more like events now. Fans and neutrals alike turn up to watch the games but also to be entertained a little on a Saturday evening. Working in a pub is a great place to see how events taking place in different countries can move people emotionally. I’ve seen tears of joy and tears of defeat.

Standing behind a bar, with my back to the television, I can see instantly how the fans go through the ringer in supporting their team. To be a part of those evenings were amazing. From Ireland winning the Grand Slam, to Champions League final wins and every final in between, aside from sitting drinking in the bar, working behind the bar was the next best thing. Serving every last thirsty punter and helping them enjoy the day was our goal and by the end of the night the staff would feel like we had won something as well.

Sport, and cup finals in particular, can affect people across the world. Your team can take you on a rollercoaster of emotions but year after year we all crave our teams doing well and winning a cup so that we can celebrate with them, no matter where in the world we are watching or if we are directly or indirectly involved.

What has this got to do with fibromyalgia you ask?

Well today is the first time since I was kid that all I can do is sit on my couch and watch four finals in a row. The days of me playing in finals are well behind me, I’ll be watching my brother in a final tomorrow but if it wasn’t for fibro I‘d be working in the pub today and revelling in the big match atmosphere.

Instead, I know that I can do everything right and still not win. I’ve learnt that I can’t go out for a pint, I need to relax and take it easy and not use up all my energy. So I’ll sit on my couch today and enjoy the finals but tomorrow I might still be up the creek without a paddle. You see as much as luck is important in a cup final and ‘your name has to be on it’, luck and chance plays a huge part in how badly our fibro symptoms affect us.

I’m going to relax and enjoy the games today and with a bit of luck tomorrow will be a good day and I won’t feel too tired or sore but even doing my best may not be enough, ‘my name has to be on it’.

For what it’s worth, here’s what I’ll be watching and who I’ve picked to win;

Blackpool v West Ham – Blackpool

Leinster v Ulster – Leinster

Bayern Munich v Chelsea – Bayern

New York Rangers v New Jersey Devils – Rangers (east conf. final game 3)

The Almighty Dollar

In the last week I have cancelled two trips I considered making because I couldn’t afford the petrol. In the shops I had my phone out adding up each item I picked out to ensure I stayed under my limit. I can’t remember the last time I bought music, books or clothes. I’ve changed from making sure I got my round in early and having no problem chipping in for a dinner bill, to being the one to suggest that maybe we should just pay individually.

You see money isn’t an issue when you have it.

There are hundreds and thousands of people in the same situation and if they have children to look after, their own needs are pushed further aside. Not so long ago the first question anyone asked somebody they had just met was ‘what do you work at?’ It might be a little presumptuous to say everyone did it but I can certainly put my hand up and say I often tried to figure out what somebody was earning after finding out what they did. Was it just me or did anyone else do the same?

The point I’m getting at is that nobody would choose to live their lives like this. Most people in this situation are there through redundancies or illness. I feel truly sorry for everyone who has lost their job because of their companies cost cutting exercises, work drying up or for any other reason. I also made plans for the future based on current and projected income. It’s awful to have that pulled from under you. It was fibromyalgia, sleep apnoea, etc. which pulled the rug from under me and while I can empathise with those who are unemployed, I haven’t experienced it, so I only fully understand how those who have left work through illness feel.

So to all the medical personnel, social welfare officers, friends, families and the general public who STILL might believe we’re exaggerating or the even smaller proportion who STILL believe that because they are invisible illnesses they aren’t real (step forward Rod Liddle); I say pull the other one. Why would someone choose to add monetary stress on to every other symptom we deal with on a daily basis?

The almighty dollar (or euro) rules for a lot of people and the gambling of a few could ruin the rest of us financially. So I am asking, maybe even begging, world governments not to make any further inroads into the spend on social welfare and health in general. No patients, carers or families chose their illnesses’, they depend on this money and are very grateful for it. I understand that cuts have to be made but please don’t punish the most vulnerable in our society; the elderly, the infirm, the sick and most importantly the children.

Please don’t let the penny-pinching and bureaucracy continue to disrupt payments to the most vulnerable. We must avoid at all costs the possibility of more families being asked the question a Donegal mother was asked last week. Somebody looking for a gold star for saving the state some money asked a question that shouts of the ignorance and lack of compassion that exists in some people towards the weakest in our society.

A mother whose child had been receiving disability payments for two years was asked ‘Does your son still have autism?’

Money might make the world go round but we all have to have some of it to spend if the world is to roll forward and not backwards.

Back to ‘Normal’

It’s nearly two weeks since I wrote about my preparations for my friends’ wedding and how I thought it would affect my fibro. I knew that I would struggle with my symptoms but there’s a good reason it’s taken me so long to post a new piece!

On top of the pain and tiredness, which are always a given, a few more symptoms really came to the fore. Concentration was a particular victim of last week. Reading the paper or a book weren’t options. I tried turning on the computer a couple of times but a quick glance at my emails and checking how my New York Rangers were getting on only made my headaches even worse.

I couldn’t focus on anything or see anything through to the end. I’ve been trying to help organise a fibro information night and last Monday I went into town talk to someone I’m helping with it. About two minutes into the conversation she stopped and told me we would work on it another time. My eyes were glazed over apparently; I couldn’t answer any questions, contribute any ideas or even repeat what had just been said to me. If ever there was a case of working on auto-pilot, this was it.

There is something very raw about a flare up. We are never cured but we learn to cope with a degree of pain and tiredness every day. When a flare up arrives however, every sensation is heightened. Pain is unbearable, tiredness is all consuming and every other symptom picks on us while we are down. Every joint burned with pain, every noise was too loud, every light was too bright and the whole world seemed to be against me but that was just a little bit of self-pity brought on by the worsened symptoms.

Last Monday I met my mam in the kitchen after that trip to town. All she said was hi and I just gave up all pretence of being in control. I cried from the pain, from the frustration and felt completely overwhelmed. I then had to ring my doctor for the results of some blood tests. My mam left the room and I spoke with the receptionist who told me she would get the doctor to ring me later. I hung up the phone and, I still don’t know why, just burst into tears again and sat there sobbing.

I’ve found out since that the blood test results were fine but when my mam came back in and saw me crying her first reaction was ‘Oh god, what’s the doctor told you know?’ It took me a while to get my composure back and tell her there was nothing other than a brutal flare up going on.

I just felt beaten up and tossed aside by the wave of symptoms I was experiencing. I felt better for releasing those emotions though and looking back now I know it was a flare up that I had been expecting. That of course is the benefit of hindsight. As much as I felt I had prepared for the flare up, if anyone had pointed out to me last week that I should have expected it , I honestly don’t know if I would have been angry at them or just sobbed like a child at my helplessness.

Fibromyalgia never fails to surprise me still. That was only a week ago and I really don’t know how I am the same person that was going through that. Slowly but surely I came out of the flare up. Some extra painkillers and muscle relaxants helped but yet again it was my support network that came through for me with their patience and understanding.

I’m back to normal now. I’ve a headache, my shoulders are stiff, my back hurts, my hips are sore, my knees and ankles too, my wrists and fingers as well, my stomach is in knots, I can feel my concentration levels disappearing, I can’t remember what happened in the episode of Deadliest Catch I watched this morning. Somehow I still feel good though.

That’s because in comparison to this time last week when I felt so completely lost and broken, I am feeling good. It might seem a relatively small victory but I dare you to try and take it off me. My tagline is ‘tackling fibromyalgia head on’, I feel a little better armed for the fight this week.