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*Multiple Sclerosis is an expensive disease. Find out how to cope on our next Unspeakable Bits webcast*

“Money”, as characters in the Kander and Ebb song from Cabaret quip, “Makes the world go round.”  And while multiple sclerosis doesn’t stop our world from spinning, it can reverse its polarity.

Our third installment of The Unspeakable Bits From a Life with MS airs on Thursday, 30th of March.  This month, we’re talking about the ‘earth-turning’ and normally avoided topic – Money.

Things are revving up as we launch The May 50k campaign 2023. The May 50K is a global fitness and fundraising challenge to raise money for MS research worldwide and also support MS Ireland projects and services. MS Ireland is calling on participants of all ages and abilities to take up the month long challenge in the run up to World MS Day on 30th May. All fundraising is done through our website here where you can log your KM’s hook up to your fitness devices and blog your way through the month. 

MS Ireland wants to employ nine specialist physiotherapists throughout Ireland to reach more people with MS and other neurological conditions. Setting up a national physiotherapy programme could save the state €19 million. MS Ireland, which has called for State funding to run a countrywide physiotherapy service, has said that delivering regular specialist physiotherapy to people with MS would significantly reduce GP and emergency department (ED) visits and hospital stays for this group of patients. Dr. Susan Coote, MS Ireland’s Exercise and Physiotherapy Co-Ordinator launched the campaign this week with AVA Battles, CEO MS Ireland, Senator Martin Conway and Deputy Colm Burke from the Oireachtas Joint Committee on Health at MS Ireland’s Bushy Park Campus in Dublin.

Health is a crown worn by those who are well and seen only by the sick.

                                                                                                                       Sudanese proverb

If I had it all over again… the phone call that confirmed that I had Multiple Sclerosis, and the subsequent 11 years, would I deal with it any better? Could I have made my journey to this point any easier? Were there ways to stop the mental and emotional carnage along the way? Would I ever stop feeling guilty? What would I say to myself? What would I say to me, to that Mary? It would go something like this…

Multiple Sclerosis (MS), Motor Neurons Disease (MND), Myelin Oligodendrocyte Glycoprotein Antibody Disease (MOGAD), Neuromyelitis Optica Spectrum Disorder (NMOSD), Guillain-Barré Syndrome (GBS)…an array of chronic illnesses, with varying abbreviations, different treatments, trajectories and yet a multitude of similarities.

All of these illnesses involve damage to the Central Nervous System (CNS) in some shape or form and the initial presentations of weakness, pins and needles, double vision and fatigue can be the workings of any and all of these conditions. Is it any wonder that MS take its time in a diagnosis? There are so many other options to be ruled out before MS can be ruled in. So many opportunities for both a missed diagnosis and a mis-diagnosis. I have always considered my MS to have been somewhat of an evolutionary diagnosis – a process of elimination by which to reach a final conclusion.

From pre-nups to divorce proceedings, from minor marriage hiccups to raising children while relapsing, we'll talk about all the Unspeakable Bits - on the MS and Relationships Webinar in April. Register now for free here.

Our host Trevis L. Gleason who will be joined by Couples Counsellor Pauline Macey and Family Law Solicitor Gillian O'Mahony from Lynch Solicitors to talk with about working through MS-related relationship issues and what to do if those issues can't be worked through. Ireland has come a long way in the past few decades when it comes to issues of marriage, divorce, adoption, surrogacy, and inclusion. When a disease like multiple sclerosis is part of the relationship equation, however, society seems to be slower in advancing. We'll talk about all the Unspeakable Bits on the MS and Relationships Webinar on Thursday, 27th April from 8pm. 

MS Ireland launched their May 50k challenge and fundraising campaign this week with Tipp Today host Fran Curry on Tipp FM. Sally Spearman from MS Ireland launched the May 50K Challenge on Tipp FM’s Tipp Today Show. To highlight and support this great fundraiser, host Fran Curry will be taking up this healthy challenge in May. Speaking of the upcoming challenge Fran Curry, the host of Tipperary’s most listened to radio show said “I'm delighted to be taking part in the May 50K Challenge for MS Ireland. Not only will it help support the vital services provided by MS Ireland, but from a health viewpoint it will also really benefit those taking part. I would encourage as many people as possible to take part in the May 50K Challenge by registering on their website https://www.themay50k.ie”. Listen to the interview here and register to take part here.  

Let me share an incident that happened to me on a Luas recently. I was lucky enough to have nabbed the last available seat on a packed tram at rush hour in Dublin. I noticed an older lady standing beside me and I could nearly predict the scene that unfolded before my eyes. A Good Samaritan noticed that this older passenger needed a seat and looked straight in my direction. She asked me to give up my seat for somebody more deserving and I replied no. The Good Samaritan proceeded to shout all over the Luas about my lack of common decency and how people these days have no manners or respect. Outwardly I looked ok, this woman had no idea that I had been enduring MS fatigue since the moment I had woken up that day.

I’m late. I schedule meetings and forget about them. I double book myself for coffee dates. I overcommit to events clinging to the unrealistic expectation that I can do it all. My life is a perpetual cycle of semi-organised chaos. Time management is my Achilles heel, a mirage glittering in the distance, just within reach but somehow unobtainable. I have always found it incredibly hard to stick to schedules, but brain fog means it’s become substantially worse. I have taken living for the now to the extreme believing that every day I wake up feeling well is limited and I’m on borrowed time. This urge to do all of the things all of the time is accompanied by latent procrastination which just adds an extra dose of panic to my entire existence. This inevitably leads to punishing guilt.