MS & Me

I love to read, always have. When I was a child, I would read in bed, in the car, at the breakfast table, in the bath. Some of my fondest childhood memories are quietly flicking the bedside lamp back on after everyone went to bed and staying up half the night with a book.  

It has been hard to actively avoid the doomsday broadcasts about our future. The daily news flashes range from the climate crisis to our impending nuclear incineration, and of course, the sage advice to wear an extra jumper should we get a little chilly when our heating is shut off. It is a particularly worrying time for those who rely on essential home care equipment like hoists, dialysis machines, and powered chairs. These are not optional add-ons at the Mc Donald’s Saver Menu; these are life-saving medical interventions. As the cost-of-living crisis looms and we face into the prospect of a bleak winter, the government must prioritise people with disabilities.

So, here they are.

Tears caused by MS-related neuropathic pain in my left side. 

After 18 years of fighting nerve pain on my left-side and all its unpredictable associated issues, Summer 2022 brought everything to the fore. Thinking about it as the sum of every year with MS, had taught me to perfect saying things like, “Oh, I am fine!”. Clearly, I am anything BUT fine.

In plain English, right at this moment, I am going through the Mother of All Relapses. It is not going well.

A bit like a volcanic eruption, my MS relapses fall into three distinct periods over my life:

Stage 1- Scary! When I was having them but didn't know what was wrong with me.

Stage 2- Boom! My XXXL relapse when I got diagnosed.

Stage 3- The Sequel! Minor relapses or pseudo-ones. I'm hoping for no more number twos, but it’s always at the back of my mind.

Having a chronic incurable illness like MS can be a lonely experience. As much as those who don't have it do their best to understand it, only other MSers will truly 'get it'. I was offered three sessions with a counsellor after I was diagnosed but I remember sitting and wondering what do say to this nice woman who doesn't have MS but is here to help me? Maybe I just wasn't ready, but I was curious to meet other people around the same age. To see how they were coping. I did eventually.

This week's MS and Me blog, Willeke tackles the subject of MS and Obesity:

Obesity.

BMI.

Not words anyone above a certain weight wants to hear.

Including yours truly, especially when uttered by others who appear as fit as a fiddle, have an ideal weight and who are not on a long list of medicines.

I know. I've been there.

Once COVID-19 lockdown was over, I swore that I was going to get back into the swing of things and life on the Outside. All those months of tracksuit and facemask wearing were over! I had watched pretty much everything on Netflix. I did get a dose of the virus but thankfully, it wasn't as bad as I had feared. Lockdown had taken its toll in general though- both physically and mentally. I still can't say the words "home schooling" without shuddering.

Last week (Part I) Rosie Farrell wrote about changing how we view and talk about disability to bring change & acceptance as part of someone’s life experience. This acceptance is part of creating personal, societal and systemic change so accessibility & equality become basic standards in Irish society. Read on for Part II: Why are you still blocking our way to equality

My disability is not a tragedy and I am not a burden. I am not to be pitied and most of all I am not an inspiration just because I live with MS.

My MS and disability is just one part of who I am. It is part of my identity, just like gender, sexuality, race or religion may be part of yours. Yet society rarely sees it that way. And for a very long time I did not see it that way either.

I’ve lived with MS for almost a decade now and I’ve encountered numerous other people living with MS, most of whom have gone on to become very good friends of mine. One of the first topics of conversation between friends with MS is the initial diagnosis of their condition.

The when/where/how of their journey with MS. These stories can vary greatly depending on the stage of life, the family circumstances, and the financial circumstances of the person around the time that they were diagnosed.