MS & Me

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

This year Father’s Day for me is bittersweet. Last May, I lost my father suddenly aged 60. His departure from this world was shocking and just like MS, it came in the blink of an eye and my whole life changed.

When I was asked to write this piece on access my head immediately spun. There are so many topics to choose from such as access to parking, buildings, medications, services …the list is endless!
 

ln the end I chose how we were accessing the services we need in the new world we are going to be living in. This virus came from nowhere and ripped through our communities.   Our lives have been turned upside down and we’ve had to find new ways of living. The question we need to ask is will some of these changes stay with us even after the pandemic has passed?

Allow Yourself to Grieve

I trudged on in complete denial for the first four months after the shock of my MS diagnosis. Overloaded with a host of new symptoms, I felt angry for being sick. A guilty narrative played over and over in my head like a depressing Moby track: If only I had taken better care of myself, ‘I’ wouldn’t have created more lesions. I remember going to a restaurant and having complete sensory overload. I became so overheated I had to strip off in the loo and splash myself with water like a complete lunatic.