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;
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???