Becoming More Disabled

Yet, if your body isn’t listening to your mind and your mind doesn’t listen to your body, where does that leave you? Acceptance does not come easy. I have always been a fighter and my greatest fault would be not listening to my body. I know I am becoming slower and less able but am I disabled enough?

No one goes looking and I never expected to have a chronic illness. It arrived. It gave me no choice. It was just thrust upon me, and I was put on the road to living with MS and there was no going back. 

The reality is that the hardships of the disabilities that Multiple Sclerosis can bring are my reality but are often not readily evident to passers-by. Everyone gets tired, everybody gets sad, everybody has aches and pains. All we need is a good night’s sleep! How often has a person living with a chronic illness heard this? If only it was that easy… right? To look at me sitting down or walking around my home, you would probably think there’s nothing wrong. But ask me to walk up the street or do something that requires energy… that’s a different story. 

There’s no getting away from it, I am slower, I can walk less, my movements aren’t as free and easy as they were even three months ago, my stamina for walking is gone. How I would love a good brisk walk or a boogie on the dance floor. To be able to stand without muscle weakness, cook the dinner, go shopping without dreading it…not doing the simple things really gets to me.

Becoming more disabled means different things to different people. For me it’s the slowing down of my body and my abilities without even been aware the changes. A slow acceptance seems to be creeping in on me. Sometimes the hill seems too steep to climb and that feeling doesn’t sit well with me. My main symptoms started out as chronic pain and cognitive issues but have developed to muscle weakness, trouble concentrating and extreme fatigue. These days it’s all about saving the energy and prioritising what needs doing. It is a tough spot to be in and still a work in progress.

My journey on this road is not without difficulties and I will say on the bad days it feels relentless, unfair, painful, debilitating… it is literally a pain in the butt and very unpredictable. It never takes a vacation nor offers much in the way of relief. It’s not my friend; I am never going to be one of those people that says it doesn’t define me or MS doesn’t have me because some days, even weeks, it does.

But there’s more to me than MS, and over the last year I’ve been discovering this. I have learned to take the good days with the bad and am much more capable than I thought. Some days it is so important to push through the pain and the negativity, to sit and think about the road I will travel. As Robert Frost said, The road we choose makes all the difference but what happens when it is the road we would never choose? The one where there is no going back, the road of chronic illness and symptom progression. Where a good night’s sleep is not the cure. In my case, I will have to learn to make peace with it… someday. 

It isn’t easy to learn to accept the limitations and changes that a chronic illness like Multiple Sclerosis may bring. This is not a sign of resignation; I prefer to think of it as my ability to make peace with where I am right now. I won’t be kicking and screaming but neither will I concede gracefully to my unwanted companion. 

The views and opinions expressed here are those of individual contributors and do not necessarily reflect the views of the Multiple Sclerosis Society of Ireland. Whilst every effort has been made to ensure accuracy of the information provided, the editor is not responsible for any error or inaccuracy contained herein.

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