It’s not the first time I sit back at night and go over past moments that captured me, inspired me and willed me forwards to do more, much more.
As societies go, there’s a lot of goodwill in the MS Ireland society, but also hard facts that tell others that this is a group of outstanding people working for people with MS.
Focused on advocacy, support, service provision, information, education as well as research and spreading awareness, you simply cannot find a better informed charity.
If anything good has come from having MS myself, it’s being involved with them on a voluntary basis. Cooperating with them when they ask my help, simply being able and allowed to spread awareness on their request and behalf, is what keeps me going. I simply couldn’t be happier showing people in Ireland (and indeed my family abroad) a personal view on what is often a very, very invisible illness.
Government budget cuts have tempered the road the society was on, leading to certain services being reduced in size and nature. But on they go. Better, stronger, faster and indeed… more. The MS Society’s mission is “To enable and empower people affected by Multiple Sclerosis to live the life of their choice to their fullest potential. MS Ireland has a vision of Irish society where all people affected MS live positive and active lives in the community.”
And that is exactly what MS Ireland does. People with quiet strength shine and you want to cherish and learn from them in what are often difficult times for yourself and your family. For example, a few months after being diagnosed in 2005, I went to the MS Care Centre in Rathgar for a week. The centre is one of two national services the society provides, and is in fact the only therapy and respite centre for MS in Ireland. The aim is giving people with MS a week-long chance to relax and enjoy different sorts of therapies on a short-term basis.
While I was there, I not only met 7 absolutely fantastic people with MS, but I learned what living with MS might be like. I will never forget how optimistic every patient was, and how caring the nursing staff were. Vincent, an elderly wheelchair-bound gentleman of about 80 I shared the dinner table with, stole my heart because he always had a smile on his face. Despite now having a dodgy memory for faces, I still remember Vincent vividly. He said he had MS longer than I was on this planet, which put things firmly in perspective. More than once he had me in stitches at the breakfast or dinner table, and I still fondly think of him. Sadly, I lost contact with him, so I’ve no idea if he’s still going to the Care Centre or whether he has passed since then.
During that week it was fantastic meeting others with MS, and I enjoyed different types of therapy, like a counselling session, massage, occupational therapy, physiotherapy, reiki etc. During the chat with the occupational therapist, we went over tools that might come in helpful around the home and I was surprised how many things there are to help you live independently. Kettle tippers, special cutting boards for bread and other food and special seats to sit on during your ironing and work at the kitchen counter, it was as if I suddenly realised that life with MS really is doable if you have the right tools.
I can’t remember how long after I returned home from the Care Centre, a lorry delivered several aides. My chin dropped to the floor when the driver brought everything in the house, because I could not remember ordering any of it. To this day I still don’t know if it was given by the Care Centre, the MS Society itself or my attending hospital, either way, the items definitely came and still come in handy!
Sadly it was my only stay in the Care Centre, because looking back now I definitely would have benefitted from more. Knowing there is a place where people with MS can live together for a week, share stories and get extra treatment, makes me want to sign up again. I received an offer a while ago, but I forgot to reply to it. As always, a very forgetful, silly Billie.
In the meantime, the Centre has “reaffirmed its commitment to providing quality professional care by achieving the coveted CHKS accreditation. The award comes after an intense 18-month development programme with the UK-based and internationally recognised CHKS, a leader in health-care knowledge systems and accreditations. It follows on from the Centre’s 2008 success in receiving an EIQA national quality and excellence award. The CHKS accreditation means the Centre is aligned with international best practice in healthcare facilities.”
Aside from the Care Centre, World MS Day, the society’s National Meeting Day and National Awards, MS Ireland is also involved in creating social, cultural and information meetings all over Ireland. The society is blessed with a team of about 120 employees who manage many regional services as well as the national ones. To support them, as well as people with MS, there are countless volunteers who make sure that no one with MS should feel cut off from society.
MS Ireland brings out the best in people, and they have done so in my case also by asking me to represent and/or advocate for them. Like this, in 2012, I was asked to talk to the press because the Irish health department (HSE) refused access to Gilenya, the first oral treatment for those with relapsing/remitting MS (*)(**)(***). I was honoured and more than happy to do so, after all, I love a good chat every now and then (oh yes, I do!) More interviews followed, so I was delighted adding pressure to erroneous and discriminating government decisions.
Last year I was asked if I wanted to be interviewed again (although I can’t remember the reason), plus I was asked to join a panel discussion at the National Meeting Day in September. Sure, my knees were shaking of stage fright – while sitting down in a plus seat – because it was my first ever discussion like this, but now I think “let there be more!” The society also sent me to a conference on the United Nations Convention on the Rights of People with Disabilities’ ratification delay, something which Ireland is shockingly slow to do, and I lapped it all up like it was the best ice cream ever (****)(*****). A week later, I attended another UNCRPD conference on the rights of people with disabilities on having a public (political) life, and again, loved it big time.
Now I’m part of a group of bloggers who write for the society’s website. I also met people who, in my belief, do the best of jobs. After meeting some of their staff and MS Ireland’s CEO, and realising how everyone works in an environment which continues to be curtailed by government spending while still being able to smile, that is the biggest gift people with MS can get from any MS society. Meeting non-MSers with such enthusiasm, a good heart and interest in MS, shows that people without MS can do as good a job as someone with MS.
Personally, I hope I can continue being involved with the society for many years to come because they showed me that MS is not the end of the road, or indeed the end of a happy life. There have been more events since, I’ve enjoyed every single one of them, and at the end of the day when my fatigue is simply untenable, I feel happy because I was able to give something back. Seeing the type of help that is out there – the Care Centre, the information the society provides etc – was a true eye-opener when I was just diagnosed. It made me realise that life in Ireland, and with MS, is possible, even when you have a foreign passport and an illness that makes you cringe more than once a day.
MS Ireland creates positivity and guidance, real social commitment and reasons not to despair when you have MS. I happily give them my time, while they give me a choice, an ideal and a reason to support those who, for some reason or another, cannot ask for help.
As you can tell, I really hold MS Ireland very near to my heart, because of who they are, what they do, who they represent and what they are capable of. And that? That simply makes them the best MS Society.
If you want to financially support MS Ireland, please go here.
If you’re interested in getting involved, please go here.
For more about the MS Care Centre, please visit this site.
For more on the MS Ireland blogs, please go here.
MS Infoline: 1850 233 233
© WVE and Ireland, MS and Me, 2011-2014. Unauthorised use and/or duplication of this material without express and written permission from this blog’s author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to WVE and Ireland, MS and Me with appropriate and specific direction to the original content.