MS & Me

Over the past ten years or so I’ve been able to attend a number of the MS Ireland National Conferences held in different towns and cities across the country. I’ve always found the talks and topics really interesting and enjoyed getting together. If a talk wasn’t relevant to my specific MS experience, I liked having the opportunity to meet other people to learn how they deal with MS and share notes.

The MS Readathon is on the horizon and for me it always signals a cosy fire, a cup of tea and lots of good books to read as winter closes in. As a child I remember participating in the Readathon at school and now, as an adult, I love to see my children curled up with a good book, getting lost in the story and bringing the characters to life in their imaginations.

Mark Twain once said, “If you tell the truth, you don’t have to remember anything.” 

 I'm sorry, but that is not how things work in my world, dear Mr. Twain. To put it another way, you are aware that specific knowledge resides somewhere in your brain. It simply takes a few diversions in order to function, make decisions, and extract information, so the information frequently comes to you later than you had anticipated. 

So, if you have MS, you more than likely either experienced it, or forgot you once had it. 

Today is World Mental Health Day, a day recognised and celebrated all over the world. With this in mind, I thought I would sit down and tell you about my journey with my mental health. The good, the bad and the ugly.

For a long time mental health was a taboo topic in Ireland and internationally. I think as time has moved on, more people are being open about living with different types of mental health illnesses and we are becoming more understanding of the struggles that some of us go through.

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.