MS & Me

As I enter my 12th year of living with Primary Progressive Multiple Sclerosis even thinking and writing the word Disabled is uncomfortable for me.

Telling; whether to tell or not to tell, when to tell, who to tell… it’s not just a newly diagnosed thing

Congratulations! For the past 10 years, you have been part of the life changing MS and Me blog, a place where people with MS shared their lives so eloquently, powerfully and without apology. 

Join Ava Battles, CEO of MS Ireland, in celebrating a decade of empowering stories.

Guest blogger Jordan McCarthy opens up about his personal MS journey and his reasons for encouraging your participation in this year's MS Readathon campaign.

Multiple Sclerosis… the name in itself can be frightening at any stage in life, even for those carrying the burden of it. What we often don't do, is talk about it as honestly as we must.      

Sometimes, we fear the reaction of those living with us, or we want to hide the unpredictability of symptoms popping up at the wrong time.

There are so many things that you provide, for which I am thankful for. When you live with a chronic illness, life can become overwhelming and tiring. You provide me and other people living with MS with so many services that can help make our lives that much easier. In February you gave me the opportunity to attend the younger persons respite stay in the MS Care Centre in Bushy Park. I was very apprehensive about attending as my mobility is now very good and my MS is more of an invisible disability as of now. Although I was in two minds about going, I am so happy I did as it was the best week of my life. 

I don’t want to dive into a long list of criticisms of myself, my life and how I could have done things better. That would be the easy way to approach this article and god knows I traumatise myself with these thoughts regularly enough. Life is always easier when looked at with the benefit of hindsight. Rather, I would like to look at this through more forgiving eyes. Sure, I made mistakes and could have gone about things in a more positive, productive way but I say this with the benefit of lots of experience and from learning things the hard way. I did the best I could with limited knowledge at the time. 

So, let’s dive in - what have I learnt that could have helped if I had come to the realisations earlier. 

The first weekend in September is always a big one in our house. No back to school for us, but every year we pack up the car and head off to Electric Picnic. This year though, I messed up the organising, and between the jigs and the reels we couldn’t go.

This is the hardest blog post I have been asked to write for MS Ireland's MS and Me Community Blog. Emma Valentine