MS & Me

Everyone knows that feeling when you wake up in the morning and you just don’t want to deal with the day. Maybe you have been working too hard, been too busy or are feeling a little down or unwell. Life can be exhausting; we all feel overwhelmed at times and need a well-deserved day to down tools and just be. It is certainly not an issue exclusive to people with MS or indeed any chronic illness. I do know however that it is becoming a far more regular feature in my life at the moment and I’m not sure how to feel about that. What happens when that well deserved ‘day’ of rest becomes every day? Is that a bad thing?

My Cog/Brain Fog and I have a temperamental relationship. Cog-fog is short for cognitive fog and is one of the invisible symptoms of MS. It can cause issues with concentration, memory, attention levels and even processing information. As we know Multiple Sclerosis is a disease of the central nervous system (brain and spinal cord). It also causes inflammation. In MS the signals and paths used between brain and body can misfire. Our brains have to work extra hard and this can cause our brains and bodies to become fatigued; because we have to try harder and use more energy than a person without MS, it can impact our cognitive function. 

I swear sometimes in life I am the unluckiest person going. My mother has said so often, “Katie, if it wasn’t for bad luck, you would have no luck at all!”

There are times when I look at my life and see a series of unfortunate events. I would write a book about it but there is already a book with that title! One time the doctor even said she had never seen the side effects of a medications happen to anyone before and guess who it happened to?? Yes, me! The doctor was completely shocked when my blood work came back showing the results. I just told the doctor “If it has to happen to someone it will be me.”

When you receive your multiple sclerosis diagnosis, it always comes at a cost. 

Not only does your idea of your future self get thumped backwards, by the time you hear those three dreaded words “You have MS”, you probably already found out that life with a neurodegenerative illness is not a single, cheap financial event. 

You might spend plenty of time on sick leave, or you might need to change the way you commute to and from your job just to show up at all. Perhaps GP visits, medicines, and accessibility measures at home to improve being able to move around at home eat away at your savings. Other things like holidays, Christmas and birthday presents or something as simple as clothes, a meal in a restaurant or a cinema visit to see the latest blockbuster, eventually begin to  elicit a dreaded, "How am I going to pay for this?"

We have known each other for a while now. I was diagnosed 14 years ago, but you were lurking in the shadows long before. You take up so much space in my head! What on earth did I think about before you came along? Why won’t you leave me alone? Why won’t you leave the other 2.8 million people you affect alone?

Happy New Year to all the MS & Me readers and your families!

As we move into 2023 in earnest, we’re excited to announce a spin-off from the MS & Me blog, an MS & Me webinar series entitled “The Unspeakable Bits”. The first one is set to air, live, from 20:00 on Thursday, 26th January (Join host Trevis L Gleason and a panel of MS professionals to talk about a Healthy Body: Healthy Brain on Thursday, 26th at 8:00pm* Register here).

Happy New Year! What is it about the turning of the year that has us reviewing everything? Planning, making arbitrary promises, our social channels flooded with infinite numbers of articles about changing habits or ‘living your best life’ (??).  

This week from the MS & Me blog archive Joan Jordan shares how she is *learning* to have a stress free Christmas.

There are the parts of Christmas I love, like time with family, winter walks, twinkling lights and evenings by a cosy fire. But the parts I like don’t always gel well with my MS. As a result, Christmas can turn into something of a marathon for me and excitement tends to quickly give way to dread when I realise there is no way my body will cope with all the festivities.

Let me share an incident that happened to me on a Luas recently. I was lucky enough to have nabbed the last available seat on a packed tram at rush hour in Dublin. I noticed an older lady standing beside me and I could nearly predict the scene that unfolded before my eyes. A Good Samaritan noticed that this older passenger needed a seat and looked straight in my direction. She asked me to give up my seat for somebody more deserving and I replied no. The Good Samaritan proceeded to shout all over the Luas about my lack of common decency and how people these days have no manners or respect. Outwardly I looked ok, this woman had no idea that I had been enduring MS fatigue since the moment I had woken up that day.