MS & Me

Multiple Sclerosis (MS), Motor Neurons Disease (MND), Myelin Oligodendrocyte Glycoprotein Antibody Disease (MOGAD), Neuromyelitis Optica Spectrum Disorder (NMOSD), Guillain-Barré Syndrome (GBS)…an array of chronic illnesses, with varying abbreviations, different treatments, trajectories and yet a multitude of similarities.

All of these illnesses involve damage to the Central Nervous System (CNS) in some shape or form and the initial presentations of weakness, pins and needles, double vision and fatigue can be the workings of any and all of these conditions. Is it any wonder that MS take its time in a diagnosis? There are so many other options to be ruled out before MS can be ruled in. So many opportunities for both a missed diagnosis and a mis-diagnosis. I have always considered my MS to have been somewhat of an evolutionary diagnosis – a process of elimination by which to reach a final conclusion.

Health is a crown worn by those who are well and seen only by the sick.

                                                                                                                       Sudanese proverb

If I had it all over again… the phone call that confirmed that I had Multiple Sclerosis, and the subsequent 11 years, would I deal with it any better? Could I have made my journey to this point any easier? Were there ways to stop the mental and emotional carnage along the way? Would I ever stop feeling guilty? What would I say to myself? What would I say to me, to that Mary? It would go something like this…

*Multiple Sclerosis is an expensive disease. Find out how to cope on our next Unspeakable Bits webcast*

“Money”, as characters in the Kander and Ebb song from Cabaret quip, “Makes the world go round.”  And while multiple sclerosis doesn’t stop our world from spinning, it can reverse its polarity.

Our third installment of The Unspeakable Bits From a Life with MS airs on Thursday, 30th of March.  This month, we’re talking about the ‘earth-turning’ and normally avoided topic – Money.

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’ (??).