Remembering The First Step

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.