2018 – A Year in Review

Using my blog to share my experiences of living with a chronic condition, I’ve generally spent late December as a time to make New Year’s resolutions and planning to make the coming year better than the crushing pain and destruction I’ve just fought through.

Though, at times, my knees have never felt more painful and restrictive than they have in 2018, I can truly look back on the most successful year I’ve had since my diagnoses.

Rarely do we enjoy blowing our own trumpets but in 2018, I’m delighted to say that my advocacy work, support in the community and my communications collateral have had a big reach.

2018 in Numbers;

1. Publications
a. 2 EULAR Young PARE Newsletters
b. 3 researcher interviews and articles in News Rheum

2. Speeches
a. Speech at EULAR Congress, Amsterdam
b. Speech to European Parliament’s Brain, Mind, Pain Interest Group
c. Speech to Pharmaceutical company, Dublin
d. Speech to Healthcare Group, Geneva

3. Courses and Seminars
a. 1 Workshop presented at EULAR PARE, Brussels
b. 2 six-week Arthritis Ireland Self-management courses
c. 1 Arthritis Ireland Breaking the Pain Cycle seminar

4. Launches and Media
a. Rheumatology Model of Care launch presentation
b. National TV, radio and print interviews following the announcement of the income disregard increase for Medical Card qualification

The difficult part of the Model of Care for rheumatology in Ireland will be ensuring its full implementation across all strata of the Irish medical system and that job begins bright and early in 2019.

It’s important to have this Model of Care launched and available for patients and their families to refer to but we need to keep the pressure on to ensure the best treatment options and outcomes for all of us.

Similarly, with the increase in the amount patients can earn before they lose their medical card, we must ensure that this is a positive step for those who can and want to work. Nobody should feel forced to think work is the only measure of successful management of an RMD or that they are not entitled to the support they require if working is not an option in their particular circumstances.

I love delivering the self-management courses for Arthritis Ireland, as they remind me of the tips and tricks I’ve learnt over the years to manage my own arthritis. More importantly, I’m reminded of where I was at the very beginning of my journey and I see the growth in people over six weeks as they learn about their own situation and reduce their sense of isolation.

Nobody invites a barman from Dublin’s northside to Switzerland or Brussels to make speeches. However, in 2018 I was asked to go to both places and it was down to my arthritis.

In Geneva and Dublin, it was my opportunity to explain to the staff of both organisations what my daily life entailed, the changes I’ve made to adapt my life and how I manage my day-to-day existence.

It was up to me to put a human story and face to the statistics and research they investigate and examine. I have a strong story given the impact arthritis has on my mental, as well as physical, health and it is important people know the full extent of potential difficulties.

This was especially true when I spoke to the European Parliament Interest Group and shared my story with the MEPs. We lived in Brussels when I was younger, and my Dad worked for the civil service there.

I have to say it was great to look around all the buildings he used to talk about and that were a part of his working life.

When it came to the increase in the medical card income disregard, I was delighted to be asked by the Disability Federation of Ireland to speak on behalf of patients. Employment for people with disabilities has always been a big issue for me and I hope the positives of this step are seen by those who deserve it.

It is not a panacea, but it is a very positive start. To be able to bring the RTE interview to Pembroke Cricket Club ensured I remembered and thanked everyone involved in that great sport for a wonderful summer.

Which brings us to Christmas 2018.

It’s been an incredible year for advocacy and providing support to those with RMDs in Ireland and across Europe. I haven’t even mentioned the vast range of cricket reporting and coverage I was able to provide this summer.

I can’t wait to get the celebrations and festivities started.

Thank you to everyone who gave me an opportunity in 2018.

Here’s to a 2019 with less pain and a better quality of life for everyone living with an RMD. I wonder has Santa room in his sleigh for that???

Merry Christmas

Finding My Thing Getting Bigger

Just over 18 months ago I found my thing and now I find out I’m getting bigger. If you haven’t sniggered a little by this point then I’m sorry, you’re obviously too mature to be my friend!

When I left college eighteen months ago, I fell into the world of cricket in Ireland. I’ve always been a massive cricket fan but ever since, I’ve reported on, commentated on and presented highlights of men’s and women’s matches at club, interprovincial and international level.

Journalism is a big and packed field. Digitisation has provided multiple platforms for graduates looking to establish themselves in the business. Not to mention the old pros who were there, doing it and wearing the t-shirt, while I was in short trousers. Only last year in fairness, reporting on cricket is easy in shorts!

Everyone needs to find something that differentiates them. My thing was being able to be the first to present highlights packages and to become a face of cricket in Leinster, and beyond, in 2018.

I’ve spoken before about the value of work on a psycho-social level. I was fortunate to be paid for doing a job I loved across the summer of 2018, but it was the confidence gained in producing quality material, socialising in new circles and having a purpose again that helped me rebuild my self-worth quicker.

Naturally, the money helps, but between medical card and welfare thresholds that I must stay below, money can never be the sole answer.

The few quid I did earn has allowed me to up my activity in the last couple of months since the domestic cricket season finished.

When I started, I had some tests and measurements done to set the base line for my lack of fitness and my weight, no surprise it was far too high (damn tasty cricket teas!).

Given a plan to work to that has included cardio and resistance in the gym, swimming and hydrotherapy (okay it’s aqua aerobics), I’ve got stuck into the exercise.

The exercise is great, it’s one part of managing my arthritis and fibromyalgia, and using them all in combination I feel much better than I did 10 weeks ago. I’ve had a few setbacks with flare ups of pain and fatigue but knowing how to self-manage, I’ve been able to get back at it relatively quickly.

I didn’t put any figures on the targets I was setting at the start. I knew I wanted to lose weight and feel fitter, but I didn’t say by how much these metrics had to improve. I also knew if both things happened, I’d feel more confident in myself and carry myself better too.

So, ten weeks later I made an appointment to have all the measurements done again, and the results are in. The non-measurable first. I have more energy, feel more confident and stronger.

The weight is down seven and a half kilos, delighted with that.

Hips and waist are down too, I’m losing weight from the right places.

Arms and thighs are bigger, finally toning a little muscle.

The last measurement is the most noteworthy, to me anyway.

I’ve walked shorter for years since my diagnosis. As my self-confidence and self-worth left me, my shoulders hunched over, and I closed in on myself.

Now as I rebuild all of that and increase the exercise, my posture is improving and I’m carrying myself closer to my true height.

I was measured at 184cms ten weeks ago, this week I’m now 6 foot 1 and 186cms. Two centimetres in ten weeks? Amazing what confidence and exercise can do, maybe soon I’ll get back to my top height of 6 foot 2 from the match-programme days.

As we start December 2018, I’ve not only found my thing, I’m also getting bigger.

(Join me in the gutter for the childish innuendo!)

Joyeux Anniversaire!

Nobody makes a big deal of 35.

Twenty-five is a quarter century. Thirty and forty are even numbers, 18 and 21 are milestones that everybody should mark. Thirty-five is just another birthday in amongst those special days.

It’s on that cheery note I turn 35 today.

Ten and a half years ago I bought my first home. The number on my home’s front door matches the age I am as of October 18th 2018.

I’m not going to lie and say I made all these great plans on the day I moved in about where I saw myself on this day when my age matches my home number. I did however envisage my life ten years down the line and how that might look.

I was wrong.

First of all, I didn’t see myself living here. I thought we (yes, me and my girlfriend/wife) would have lived here for a couple of years and then moved on to a bigger place. There was also the thought of having a child or two if we were lucky enough.

My Dad was born in October too and in the summer before his 35th birthday, he was posted to Brussels to work for four years, bringing his wife and three children, with me the middle child. (the fourth arrived over there, the Brussels sprout as she hates being referred to!)

We had a joint dinner last week to celebrate Dad’s birthday and mine too. Mam and Dad, elder sister and brother-in-law and the younger two with their partners. I turned up solo.

Arthritis and fibromyalgia have changed my life in many different ways. Last year I wrote an article for the journal.ie in which I stated that I was grateful for arthritis. I stand by that statement as it has made me a more compassionate, understanding and better person.

I have also learnt so many new skills, gone back to college and found a new area of work that I wouldn’t have done, had it not been for my diagnoses.

Learning about arthritis and advocating on behalf of others living with arthritis has also given me opportunities to travel and speak to varied audiences at home and abroad that bar work just cannot offer.

Sadly for me, for a number of years after my diagnoses I, like many others, catastrophised my situation and presumed I would become a burden to any future girlfriends; unable to bring anything positive to a relationship. Whether that was money or a sense of self-belief from being successful in work and life.

I have learnt that I can do so much and contribute positively to life and the world. I’ve made a difference in my own life and I’ve helped many others over the years of voluntary work. I have my flaws and I am anything but perfect, however I do have plenty to offer.

I never imagined still living here at 35 but this is how it has panned out. I never imagined being single at 35 but this is how it has panned out. Then again I never imagined having arthritis or fibromyalgia and I’m not doing too bad managing them, so….

Thank you to everyone who has wished me a happy birthday today on Facebook, on Twitter, by phone and in person. Each of you remind me of where I’ve come from, where I’m going and the journey I’m on living with arthritis and fibromyalgia.

 

 

The Clubs Are Our Heart and Soul

Merrion lost the Irish Senior Cup last Saturday to a serious outfit in Waringstown who have now won the competition more than any side after completing their sixth triumph.

It wasn’t the deciding factor in the match on Saturday, but there was speculation throughout the day and since, about whether Cricket Ireland took the final as seriously as the two sides.

A third match on the pitch in a week, no programme, no Wi-Fi to report on the game, and a general feeling of ‘after the Lord Mayor’s show’ pervaded. It didn’t feel like the big stage these players deserved, and on which they could perform in front of their fans, families, youth sections and club members.

Those clubs are the heartbeat of cricket in Ireland and five days after celebrating being crowned Leinster Premier League Champions, Merrion were looking to match North County in completing the double.

This has been a massive season for Merrion as a club on their return to the Premier League after a season in Division 2, as they play for and in memory of Damien Poder. The players have carried him with them every step of the journey with ‘Podes’ adorning their Merrion caps.

Captain Dom Joyce was bitterly disappointed not to have won out last Saturday.

“I pictured myself lifting the cup with Cian (Damien’s son),” said Joyce, “and a few of us were obviously emotional when we spoke before the game about Podes.

“With having Ailish (Damien’s wife) and Cian here as well it’s really disappointing. It’s still a bit fresh to be honest,” concluded Joyce as he left to be with his team.

Winning the league is of some consolation to the side who, with 10 wins from 13 and a 33-point lead over Clontarf, are already champions before they face the northsiders tomorrow.

“It’s massive to win the League this year, we were on a massive high on Tuesday night and we were confident we could take it in to the final.

“Losing Poonish was a massive blow, he’s the top wicket-taker in Leinster so we were lacking a bit of cutting edge, and his experience and nous, which put pressure on guys who aren’t maybe used to being in that position.

“I’ve said this to the team all year, but we’re way too reliant on John (Anderson) doing the hard work for us and other people need to stand up. Unfortunately, (against Waringstown) they weren’t able to go on and get that big score.”

Big scores won’t concern Merrion or indeed Clontarf too much tomorrow but for Phoenix and Leinster there is lots to play for on the final Saturday.

Phoenix in the relegation position need to beat The Hills to have any chance of overhauling Leinster, 11 points above them in the play-off position, who face North County. Vital games for both clubs as one will be automatically relegated by the close of play tomorrow evening, the other will have one more chance to preserve Premier League status against either Rush or Railway Union.

No such considerations at the other end of the table though. Come what might may tomorrow, Merrion will be crowned Premier League champions, and it is fitting they will do so at Anglesea Road after their match with Clontarf.

The Game of the Day cameras began the season in Dublin 4 and paid to tribute to Damien Poder alongside the pitch with the Merrion and YMCA teams that day in April.

Tomorrow, as Merrion collect their Premier League trophy, they will do so with Podes on their caps and in their hearts as he has been all season.

There’ll be absolutely no denying Cian lifting that trophy with Dom this weekend.

Two Weeks On The Bog… Side & In Belfast

Unsurprisingly, you can take the man out of AC5* but not the AC5 out of the man. Two weeks spent watching cricket in Derry and Belfast broken up by tours of The Walls, the Bogside, the Titanic Quarter and Crumlin Road Gaol saw to that.

This has been a very hectic summer, travelling the length and breadth of Ireland covering cricket and enjoying every second of it. The last two weeks consisted of Monday, Wednesday and Friday internationals both weeks, with a live cup final commentary and Game of the Day coverage on the middle weekend.

During the second week in Belfast, I drove to Clontarf and back for a Game of the Day on the Tuesday and rounded the fortnight off with coverage of the Irish Senior and National Cups last Saturday and Sunday.

This week is a three-day match between the Leinster Lightning and the Northern Knights in Dublin and truth be told I wouldn’t have it any other way.

While away over the last few weeks I made sure to catch up on the history and culture of two beautiful cities.

Derry (or Londonderry, depending on your persuasion and that’s fine by me) is a 17th century walled city and being able to walk the walls to this day is amazing. To not have to imagine what it felt like living in the Bogside, on reclaimed land, in the shadow of the imposing fortifications, is very interesting.

I toured the Bogside and wandered through the Waterside on the opposite bank of the River Foyle. There are flags, painted kerbs, murals and slogans throughout and to me it was all about learning about the culture and socio-economic situation that pertained throughout the years of the euphemistically referred to Troubles.

On to Belfast last week and again a city built on hard-work and endeavour. The Titanic museum certainly falls into the interesting sector.

Knowing the outcome of its maiden voyage, it’s hard to enjoy a tour showcasing the shipyard that built the liner but it’s certainly right to appreciate the circumstances within the city at the time, the huge impact of the Harland & Wolff yards on city life and the skill of each of the trades involved in building the Titanic.

Overlooking the very dry-dock used to build the ship, the scale of the operation and its proximity to city life cannot be underestimated.

Crumlin Road Gaol is another on the list of places to see, though not necessarily enjoy. A true Victorian prison built to house 320 inmates at its maximum, there were times during internment and the Troubles that 1,500 prisoners were housed there.

That number also had to ‘slop-out’ each morning and conditions couldn’t have been anything but filthy and overcrowded to say the least. Learning about the history of the Gaol and Governors, the hangman’s cell and the underground courthouse tunnel was fascinating.

As ever the learning and searching doesn’t end when the tour finishes. I spent a fortune on books throughout both weeks.

The domestic cricket season is winding down, plenty of reading to do over the dark winter months looking back on summer 2018 and much, much further.

 

*AC5 was the course code for my studies on Arts, Culture & History in Dun Laoghaire 2015/2016

An Open Letter

Dear Everyone and Anyone (or just my Mam!)

I’d be surprised if anyone actually missed my ramblings on here over the past 12 months, but I hope that at least one or two of you wondered where I had gone to. Otherwise, pouring my heart onto these pages over the years was merely a cathartic process for myself and didn’t provide as much support and help to others as I hoped.

I’ve noticed with other health blogs that I read, or I’m involved with, they tend to go quiet for three reasons. The admin gets bored and has nothing to say. The blogger gets steadily worse and doesn’t have the energy or capability, after managing their condition, to run a blog.

The third and best outcome is that the blogger’s situation improves, and their new busy lifestyle restricts the opportunities to post blogs and articles on health and disability.

I’ve written about the many awful things that have happened to me both pre- and post- diagnosis on my journey with fibro, arthritis, et al. I also made sure over the last couple of years to talk about the good things in life and how much I enjoyed going back into the classroom and taking up part-time work again.

This post has been going around in my head for a long, long time but I’m glad to be finally sitting down and committing it to ‘ink’.

As I was finishing my education with DFEi in Easter 2017, I interviewed for an events role with Cricket Ireland for the summer. From that interview I moved sideways into marketing and digital media.

Since then I’ve been on a treadmill of ever-increasing speed, all the while trying to manage my conditions.

I have been indulging my writing muscles throughout. I wrote pieces promoting the Ireland versus West Indies match last September Article on Sion Mills CC, I interviewed boxer Ken Egan for the 2018 Cricket Ireland Annual (and a Website piece on Clondalkin CC) and I wrote match reports, interviews and lots, lots more.

Writing the tweet that confirmed Ireland’s elevation to Full Membership of the ICC as a massive cricket fan was a particular thrill.

In February 2018 I moved on from Cricket Ireland and a little unsure of where to go next, I used the network of contacts I’d built up to find some work.

That was when Cricket Leinster and HBV Studios stepped in to keep me busy. A new proposal to produce ‘Game of the Day’ packages for Premier League cricket in Leinster was being developed and a presenter/reporter who could commit the time and energy required was needed.

It was almost serendipitous that I was available at this time and could step in to the role. From that initial meeting and discussion, things have just grown and grown, and gone from strength to strength.

We have produced ‘Game of the Day’ packages for Premier League, Leinster Senior Cup and Schools cricket, as well as recording live features at events and conducting live cup draws.

Added to this, we have done two different live streams. The first was of a one-day match in Skerries, the second was a different animal altogether.

A three-day festival in Sydney Parade, consisting of six matches and nearly 20 hours of live cricket. For both live broadcasts I have been a host, commentator and conducted the interviews.

In a further role, I have become the travelling reporter with the Leinster Lightning InterProvincial team. This is a great role, travelling the country, interviewing and reporting on some of the finest cricketers in the country.

I also secured a production role for both Ireland’s debut men’s Test in May and T20Is against India in June. These were amazing for my broadcast experience and will stand me in good stead for years.

Not to mention that floor managing for the Test match meant I was close enough to hear the players singing Ireland’s Call ahead of the match. Close enough for them to bring tears to my eyes as I looked over a full stadium watching a cricket match in Ireland.

Alongside all this cricketing activity, I have maintained my work with Arthritis Ireland and EULAR Young PARE. I’m determined that my advocacy work won’t get side-lined even while I get busier over the next few months and years.

Stacked up together, this schedule has meant there is not much free time, other than relaxing and recovering.

My last month has consisted of a week in Amsterdam for the EULAR Congress, a week in Derry with the Lightning, a week in Malahide for the India matches and a week preparing for and presenting the T20 festival.

Needless to say, I took a few days at the start of the week to recover completely.

My fatigue has been pushed to the limit but the adrenaline and satisfaction of doing something I enjoy helped. I did make sure to sleep properly, avoiding social activities (mostly!), throughout the last month.

My pain has been quite bad. On my feet for long periods, my knees and hips have been particularly sore but maintaining my normal medications supplemented by extra painkillers, anti-inflammatories and a burst of steroids have really helped.

In truth, the main difference has been psychological. Yes, I’ve been in pain, yes, I’ve been tired and yes, they were long days. If my joints are going to be damaged anyway, why not do something enjoyable while I can?

I’m doing something I really enjoy and for the first time in years I’m feeling productive and content. My joints will get worn and damaged anyway, if it’s happening a little quicker through this work, I’ll live.

There have been times over the last seven years when I couldn’t face going outside my front door, through my anxiety and depression, and the sheer pain and fatigue that was beating me down every single day.

Believe me, I still have plenty of mornings when unexpectedly my knee will be swollen, my ankle locked or my mind will tell me I’m worthless.

Yes fibro and RA are shitty but I’m not going to feel bad for feeling good. I’ve felt bad for feeling bad, long enough, and that was no picnic.

If I am setting myself up for a fall it’s on my shoulders.

I might flare tomorrow, I’m well aware of that. But sitting at home doing nothing over the last few years, I’ve flared, at least now I’ll have some great experiences to lean on and drag me through.

Our cousin’s barbecue is tomorrow night. I’ve missed a few years through anxiety (imagine being too anxious to hang out with your family? it happens), pain, or being in hospital.

I’m raging to be missing this year’s event but this year it’s because I’m working. I’m going to puff my chest out and graft a little more this weekend.

It’s good to be back.

Yours,

Fibrofella.

 

PS: God rest you Lord Mayor, will be thinking of you this Sunday. Always encouraged my writing from day 1.

 

When you crack put the rave arm up!

This day last week I cracked. I cracked big time.

Earlier this year I wrote about being grateful for arthritis, for the first time and for a short time I questioned that statement.

The arthritis was flaring really badly. I stepped in for one rep of a drill with the team I coach a few weeks back. My knees and hips have been aching since. I had to have my knees drained and steroid injected. The arthritis didn’t cause me to crack last week.

Last Tuesday, I was 48 hours into a horrible bout of flu that only cleared on Friday. I hadn’t eaten anything in that time, I was weak, sore, tired and vomiting. It wasn’t the flu that caused me to crack last week.

This day last week I hadn’t been able to take my anti-depressants for two days as I was waiting for the chemist to get a delivery. I’ve been on them for a long time, they are a great help. I feel no shame in taking a medication to help my mental health. It is no different to my arthritis medication. It wasn’t the lack of anti-depressant medications in my system that caused me to crack last week.

Last Tuesday morning I watched a documentary on the golfer John Daly. (One of the best ESPN 30 for 30 episodes I’ve seen http://www.dailymotion.com/video/x517mif ) His life is a rollercoaster of massive highs and crushing lows, each one illustrated by his friends and family. My life has never got as high as his but I’ve felt as low as he described and I could see myself in him. It wasn’t the documentary that caused me to crack last week though.

Last Tuesday was a metaphor for living with arthritis and fibromyalgia on a daily basis. It is never a single thing in isolation that causes a problem. There are a multitude of issues that can crop up at any given time. You can go to bed feeling okay and wake up unable to shave, button clothes or walk anywhere of consequence.

I cracked last week due to a combination of all those things, and more besides, hitting at the same time. Once the crack appeared, every doubt, worry and pain I have about myself and my health rushed through my defences.

I was left a shivering, bawling wreck on the couch. Distraught, disgusted and disgusting.

Thankfully, I found a moment of clarity and not only recognised I needed help but asked for it too.

I know I’m lucky with the family I have around me and all they do for me but when my parents arrived at my door last week, I don’t know if they knew how close I was to shattering not just cracking.

It was an awful day when everything conspired to get in on me when I felt weak. That may happen but as I’ve said before,

“You haven’t forgotten how to drive just because you stalled the car, despite what the angry, horn-blowing drivers behind you might think.”

https://fibrofella.wordpress.com/2014/03/27/stalling-my-car-2/

A couple of days at home with my parents and the younger pair (three really?!) soon had me rallying. The steroid injections began to have an effect, the flu began to wane, the medications kicked in, and my confidence in myself grew alongside my health.

Every day is a school day and last Tuesday taught me something important. I’ve grown in the last while to the point of recognising when I can’t cope myself and when I need to call in the cavalry. Now I do it immediately.

I know I’m lucky and not everyone has that support but please, especially the lads, put your hand up and ask for help.

Don’t let everything build up and take over your life. I wouldn’t want anyone to be where I was last Tuesday. I’d much rather you were where I am this Tuesday; physically in pain but when are we not? Mentally confident in my abilities and talents.

A week is a long time in politics arthritis.

 

Arthritis Ireland Helpline 1890 252 846 (office hours)

Samaritans 116 123 (24 hours)

 

Que Sera, Sera

I set my alarm for 8am today. The plan was to go for a walk, come home and then get stuck in to some work around the house after the exercise was done.

All I can say is my alarm went off at 8am.

I’ve long given up the belief that this blog is my link to thousands of readers but if any of you have wondered where I’ve been this summer; this one’s for you.

I’ll get the negatives out of the way first. I’ve struggled with exercise all summer as my heart and blood pressure have given issues. Is it a side-effect of the myriad medications I’m taking or my immune system attacking yet one more internal organ? The jury is out but we are looking in to it and we’ll hopefully know more soon.

My knees are causing me more problems than ever, they seem to be on a forever downward spiral at the moment. I find it difficult to bend them or load them with extra weight. When I go for the train in the morning, I know the stairs to cross the platform will be excruciating but I go slowly and I get there.

Even with the knees as they are I’ve started doing some coaching this season. They’re going to be sore anyway so why not for a good reason like having a laugh with a team and being involved in football again.

The rest is as it has been this last while. No better, no worse. My hands and shoulders are the worst affected after my knees and everywhere hurts all the time. I will try not to let it hold me back though. I’m on the steroids and the codeine at the moment but hopefully that’s just a short burst to regain control.

Now to the positives of a great summer. Many will have thought I went to ground as my output has been next to nothing through my personal accounts. However, I’ve been hiding in plain site as I’ve been on social media for almost the entire summer.

I finished college in May, leaving Dun Laoghaire after they rebuilt me into someone able to function in the real world. Luckily, during the Easter break that preceded the end of term, I made contact with Cricket Ireland about a temporary position for the summer months.

It’s a sport I’ve loved my entire life and 2017 has been an outstanding year for the game of cricket in Ireland. There’s always work to do but to gain full membership (one of only 12 countries) of the international governing body was a momentous day.

To have wanted that day to come, as a fan, for so many years and then to be there to broadcast and publicise the official word coming through from the meeting is something I’ll never forget. So many people, worked so hard to bring the Ireland to that point but I felt so lucky to be able to say I was there, in the office tweeting and posting, the day it happened.

So I’ve spent my summer working in cricket. Match reports and interviews are one aspect but there are so many other jobs to be done I haven’t really had a second to step out of the bubble. That’s been by choice though, I love the game and want everyone to know about it and what it can offer young and old alike.

Another big day, but on a much more personal level happened just a few weeks ago. I lost touch with my school friends very quickly after going to college. There was a reunion a couple of years back but my anxiety was too much and I didn’t attend.

When another was organised this year, I resolved to go. I’m delighted I did because I got to see and catch-up with people I was so close to so many years ago.

It’s September now and for the last two years that has meant going back to school. Not this year.

Now it’s time to take the step back into the working world. It’s going to be tough, I have benefits, medications, hours of work and body strength to consider.

However, this step will not be excruciating. These are not the steps to get to the train in the morning. I’ve spent two years upskilling, getting experience, learning and testing myself to the point that I know what I can do.

Que sera, sera.

I am capable of doing things I enjoy be it a hobby, like coaching, or a job, like media/communications, it is up to me to make it happen. If my arthritis needs treatment or attention it will get it, I know I need 5 minutes extra to get the train in the morning but I don’t want to be held back by it.

Like my online presence this summer, if I can keep my arthritis hidden in plain sight then I can make my life an enjoyable one, not just a matter of survival.

I miss my friend

I’ve been single for a long time. Too long. It’s been hard trying to feel attractive to any girls when I haven’t felt confident or comfortable in the person I am at various times in the last few years.

There’s been a few dates, a few nights out and things but never anyone there to go home to at the end of the day. Last Friday, it would have been lovely to know I had a girlfriend to share the evening with and distract myself.

I walked out of work on Friday and had a cry for myself.

Saturday was the first anniversary of the death of my friend and mentor ‘The Lord Mayor’. Tony was a friend, mentor, colleague and guide to so many and I know there were plenty more people feeling the same way over the weekend.

I’ve never shied away from my emotions and like to let the tears out when they come. I knew the tears would flow freely on Friday evening and on Saturday. Unfortunately, I don’t feel strong enough to cope with that on my own yet but I know it’s more than ok to talk about it.

I fight depression every day and I’m not certain I can trust myself to deal with something so sad on my own at the moment. Maybe I am, but I don’t want to take any chances. I would’ve loved to have someone to come home to for the evening.

Not someone to simply unload all my woes on and be my psychological sponge. Rather, a partner who shares in the highs and lows, who I could just hold and be comforted by. Sex is great don’t get me wrong, but sometimes guys just want to cuddle too!

I wanted to go to the pub we worked in together and toast Tony’s memory on Saturday. But I couldn’t face it. I wasn’t strong enough to walk in the doors and face all the memories of my friend on that day. I’ll go in another day and do it my own way.

When I rang Tony’s phone the automated phone voice read my caller ID as ‘Want-a-pen’ over the ringtone. As soon as I spoke to a woman over the bar counter, just to take an order, Tony would offer a pen to take down her number loud enough to redden my cheeks in front of everyone.

I miss you winding me up mate, and I let you down, I still ‘Want-a-pen’ as I look for a girlfriend!

 

 

 

Changing the RA Narrative

Let me get one thing clear I put a ‘controversial’ title on the piece to draw attention to RA, rheumatology and my own situation not because anyone told me to or, as has been suggested, paid me to. It’s also true. As hard as that is for many people to hear, believe or understand, it’s the truth. If it shows I had a “big deficiency in my life of maturity” as one commentator put it, well yeah, I admitted as much in the title of the piece;

‘I am grateful for arthritis. I’m a better person than before my diagnosis’

(link to original article by clicking here)

Rheumatoid arthritis is a f***ing curse. Let’s not make any bones about it.

Would those that had a go in the comments section prefer that I wasn’t coping so well? Go back three years. Would they prefer I wasn’t able to get out of bed? Go back four. Would they prefer me being so depressed I couldn’t see a future, any future, for myself? Ongoing and daily battle to continue fighting.

I’m doing well. No, actually, I’m doing great. But it all comes with an asterisk of “*at the moment.” Who knows what tomorrow will bring, a month will bring, a year will bring? I want to have kids, that’ll mean coming off methotrexate, what’ll happen then? Will MTX stop working? Will my knees, which already grind like peppercorns need replacing? Can I find a paying job that will sustain the mortgage long-term even with the negative equity I’m in?

I get the impression, people would have been more comfortable hearing all that from me last week. I’m sorry, I’m not here to make it comfortable for anyone. Living with arthritis is uncomfortable enough. Standing when you need to sit but look fine on public transport. Queueing for ages to get your bloods done every month. Remembering to take 17 tablets throughout the day. Wearing a fucking CPAP mask because of sleep apnoea brought on by shoddy immune system. Injecting myself every week with a chemotherapy drug.

So you’ll excuse me if I see the opportunities that arthritis has given me to learn new skills, try new things and work in new environments as the biggest and best silver lining in the world.

Last week I was part of the marketing and communications team as Cricket Ireland became the 11th Full Member and Test playing nation of the ICC. I interviewed and interacted with the great and the good of Irish cricket, sport and government.

I loved my job as a barman and wouldn’t have left if I hadn’t got sick. But riddle me this; how does a barman and cricket fan on the northside of Dublin engineer a position for himself within one of the greatest days in the history of Irish sport?

He doesn’t.

But this guy did.

I’ve had to re-train, I’ve had to rebuild and believe you me I started from scratch when I did.

Why would I have a go at anyone who tries to survive on benefits when I’m exactly the same? Why would I even think about forcing someone back to work if they can’t, when just two years ago, getting out of bed was my biggest weekly achievement?

I wrote about my situation and the knocks I took and how I’ve tried to cope and manage.

That’s why I am grateful for my arthritis.

 

P.S.: Thanks to everyone who sent me messages on social media in the week after the journal.ie article was published. I didn’t reply for two reasons. Firstly, I was trying not to reply to the not so friendly messages and add fuel to the fire so I stayed off twitter and facebook. Secondly, the publication coincided with one of the maddest, most exciting weeks of my life. I’m a cricket fan who got to be involved in delivering the message of Ireland’s elevation to Full Member status. Time for anything else was remarkably scarce!