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Would you be interested in reading a work of fiction with a character with MS in it? Or do you read to escape the reality of living with MS and don’t want to be reminded of it? Or maybe you believe it would be good to see more representation - to normalise it as a feature of life many of us have to deal with? There are a number of memoirs by people with MS including our own Trevis Gleeson's 'Chef Interrupted' but I have not come across many novels where the main character has MS. I set out to find out if such novels exist and came across three.
Whitney Houston sang about wanting ”One moment in time” and I’ve definitely wanted one moment when I’m more than I thought I could be. In fact, I believe that everyone deserves their own ‘moment in time’.
I was 64 on my last birthday and ‘celebrated’ my 33rd MSadversity shortly thereafter. I was never physical or sporty in my pre-MS life. I was never that way driven/focused and was happy just getting along. I never made the school teams, never wanted to climb a mountain or run a marathon but after the gravity of my MS diagnosis sank in, I wanted to keep going as long as I could. I wanted to be the best I could be.
Thirty years ago, I was diagnosed with Relapsing Remitting MS. There were no treatments and the prospect for my future looked bleak. Mobility problems, the infamous MS hug and chronic fatigue were some of my early symptoms. I was 23 and looking forward to an exciting new career in London and it felt as if this bubble of optimism had been burst. Looking back, I did not have the mental tools to help me with such a life-altering diagnosis.
To access a neurologist in Ireland you must have a referral from a general practitioner (GP) based in Ireland. Ireland has a two-tiered health system; the public and private health sectors. Your GP can either refer you to a Neurologist in the Irish Public Health System (you will then go on a waiting list), or you can request a referral to a Neurologist in the private health sector (shorter waiting time, but you must pay for this service).
What would you say if I told you that the best therapist has four legs and a wagging tail? Or that my best friend likes belly rubs and chasing after cats? You’d probably think I was crazy, but my closest companion happens to be my 8-year-old dog Alfie (he’s also known as Alfred when he gets into trouble!). He’s a cross between a Jack Russell Terrier and a Pug. His breed is more fondly known as a Jug! He’s the resident sock thief and postman patrol in our house and from the day he arrived, he’s left paw prints on all of our hearts.
WIN €1000 WORTH OF BOOKS FOR YOUR SCHOOL
We already have 6 fab avatars who grace our website, but we reckon there’s room for one more. Here’s where you come in. We want you guys to design a new avatar to join the ranks alongside Pearl the Mermaid, Joan of Books the Warrior, Sir Readsalot the Knight, Bookie Monster, Cosmo the Cosmonaut and Dean the Dinosaur.
There is a fear of disability ingrained in many of us from a young age. Being disabled or sick is seen as abnormal. Those of us with Multiple Sclerosis (MS) often deny ourselves the joy of participating for fear of being stigmatised. Disability has typically been something to hide as it makes others uncomfortable. Since some MS symptoms are invisible many people choose to conceal their disease as they worry about being treated differently or being isolated. This is further perpetuated by ‘masking’- passing as ‘non-disabled’. Invisible MS is more ‘palatable’ to the ableist world we navigate, which is perhaps why stigma is still so rife.
MS Ireland were delighted to launch MS Explored - The Podcast back in September. As we begin planning for Season 2 we are keen to hear from our listeners and use this feedback to help inform our plans for future episodes. We are inviting our listeners to provide their feedback in a short 3 minute survey. The survey can be found here:
December 10th is the annual Christmas Jumper Day for MS Ireland. The past two years have been hard for all of us living with the pandemic. As the world shut down in 2020, it was such a surreal experience for everyone. Thankfully this year the world has somewhat reopened. Hopefully next year we can say Covid is a thing of the past. With everything moving online due to social distancing, so many charities have lost out on fundraising.