MS & Me

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.

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.

“Energy creates energy”, is something my mum has always said.  I never realised how true this was until I was diagnosed with MS and had none.

Now don’t get me wrong, when fatigue hits me, I’m not jumping out of bed to get some exercise done. Far from it in fact, but ‘energy creates energy’ as a rule is, in general, a good one to follow.

Nobody enjoys going back to the place where it all began, the room where you were told you had multiple sclerosis.

Your follow-up appointments don’t have to be an emotionally overwhelming time. If you go in prepared, you’ve won half the battle. Whether you’re a list-person, a cheat-note person or prefer to go in gung-ho with nothing, seeing your neurologist is the most important part of your treatment plan, so it deserves some work beforehand. Take it from someone born with a very practical minded streak who loves making plans, love schedules and lists!

It is safe to say this year has been the year of the ‘staycation’ and exploring our own back garden. This time last year we had all hoped that by now the pandemic would be a bizarre distant memory. Perhaps, you had dreamed of plane hopping to some exotic, sunny location during the summer. Finding some perfect getaway to relax and reflect on the absurdity of the last year while sipping a cocktail and looking out across a crystal-clear sea with waves breaking over ivory sand. But alas, it seems that the way we travel is not set to change anytime soon.

The innocence and compassion of childhood are qualities that I often wish we carried through to adulthood. If they had, I believe they would make us more empathetic and understanding human beings.

To say my children are my life is an understatement; they mean the world to me and when I first received my MS diagnosis my thoughts turned to them immediately. They were 6 and 4 and a half at the time and they had boundless energy.  I worried that I wasn’t going to be able to keep up with them and that maybe I wouldn’t be able to look after them the way I wanted to. My mind immediately began to come up with worst case scenarios and I remember crying myself to sleep that night thinking about all they were going to miss out on because of me. My guilt was immense. In my shock and upset at the diagnosis I had catastrophised everything and it took me some time to realise that our world had not ended, it had simply changed.

It’s not uncommon to think of Multiple Sclerosis as only a physical condition. That’s all one can see (unless looking at an MRI)- symptoms from the damage it causes to the nerves resulting in problems walking, balance, muscle weakness or vision loss.

This week we thought we’d take a different look at Life with MS. The MS and Me bloggers are in touch with each other a lot. We share updates on how our MS is faring and ask questions about treatments and symptoms. It is fair to say however, that a significant percentage of our WhatsApp messages involve pictures and stories about the furrier members of our families.

Anyone who has a pet will understand the joy they bring, but a quick poll of our bloggers suggests that having a dog or cat is beneficial to our well-being and how we live well with MS. Our pets are our companions, confidantes and always agree with us! This week Ciara, Rosie and Niamh share their pet stories.

I have been diagnosed with Relapsing Remitting Multiple Sclerosis for 10 years now. That’s one MRI per year- plus the clinical trial related ones. Let’s say that I have been in a giant, buzzing magnet over 20 times.