MS & Me

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.

Niamh McCarron says people with chronic illnesses and disabilities have been asking for remote working for years, often getting told that it can’t be supported, for a whole list of reasons

I was diagnosed with MS twenty-five years ago last January.

Twenty-five years! A full quarter of a century!

So, what’s the difference between now compared to the day of my diagnosis? That day in 1996 I was pretty normal, with a very slight numbing sensation in my right shoulder and down my right arm. Today, MS has taken a significant toll on me, leaving me with fatigue, brain fog, a bad (*very* noticeable) limp in my right leg and very frequent bouts of extreme facial pains.

The paints dance across the page, running into each other in ways you hadn’t planned but looking all the more beautiful for it.

It’s like an analogy for life really. No matter what way you plan, life will do its own thing but that doesn’t mean it’ll be any less beautiful and worthwhile