MS, here today, gone tomorrow?

When you receive an MS diagnosis, sometimes the hardest battles you will have to fight are those with yourself.

You’re unsure which treatment to consider when you learn your symptoms require a multi-disciplinary approach, or whether early retirement is a drastic yet necessary factor if you want to slow down your disease-progress in a significant manner. Decisions like these should not be taken lightly, but despite being wiser and older, and the harder you seem to try, the more difficult it becomes.

I am no stranger to being my own worst enemy, as well as MS being its own enemy. As a neurodegenerative illness, MS plays with unpredictability as if it has nothing better to do. Caused by an abnormal immune system, MS causes your body’s defence system to attack itself in the central nervous system (your brain, spinal cord, and optic nerves).

Oh, joy it is not

One thing is certain, degeneration happens, yet it forgets to enlighten you in which physical state you will wake up in the morning, and how you will eventually go to sleep at night. If your persistent MS fatigue is anything like mine, powernaps are overrated, and you go for XXX-large naps.

When asked what it feels like to have such days, I draw comparisons of being in a theatre watching a non-scripted play about winning and losing. The actors and dancers are all present, yet they have yet to be informed of how the play will end. The costume attendants brought the wrong dresses for the dancers, meaning pressure pain begins to hurt their bodies. Two things are certain: before act 1 is finished, I will need a cab ready at the theatre exit as fatigue with a capital letter F arrived, and the play will finish with an open ending saying: come back tomorrow if you want to see more.

As years go by, and the wiser I have become, I still find the fickle nature of MS difficult when I need to cancel events on very short notice when excruciating piercing facial pain and environmental noise appear, when either/or kick in. Despite having a very genuine reason, pulling out leads to having a guilty feeling for cancelling, as past experiences have shown who truly understands the nature of my illness, while others have put themselves first. While karma is a great thing, I hope they will never have to experience what stabbing facial pain feels like.

Like the other 2.5 million people with MS on this planet, I also wish MS were more sensitive to my sensibilities, as its capriciousness makes it difficult to find a permanent solution to life itself. After all, 15 years with MS has taught me that what I decide to do today to take care of myself, MS itself is more than capable to override that choice tomorrow because of the unpredictability of neurodegeneration. In the meantime, all I can do is wait for that one clinical trial that will provide a cure for MS, but having been through the emotions of waiting for trial results, it is better to be realistic than live in hope. Anything that happens then, will be an added bonus.

It didn’t work out that well

After my MS diagnosis, I told my employer and colleagues countless times I learned my lesson: I finally learned how to pace myself, and next time I will not work too hard, too long, too much.

Considering some people go from doctor to doctor for years trying to find what ailed them, I was lucky in that my hospital consultant told me my MRI showed a high probability of MS just four days after being admitted, and just 6 months after my initial symptoms of trigeminal neuralgia and unrelenting fatigue began.

Being diagnosed is for some people one of the best things that could have happened because of the lengthy time it took to be diagnosed. To others, learning you have an incurable illness may resemble doomsday.

However, it is not the end of the world but the end of the world as you once knew it. It is never easy, even for those who think, ‘I finally know what is wrong with me, now let’s get on with it!’ At some stage you will find that you’re going through a whole range of emotions, whether it is anger, disbelief, grief, and perhaps soon after, acceptance.

Been there, done that

(scars of falling, hurting myself)

In stride neurologists, physiotherapists, speech therapists, and lots of other –ologists.

Out goes your sense of being super strong.

No matter how many specialist appointments you collect, never let them overwhelm you. Ask for a time-out when you feel they are overcrowding your world or your thinking.

The medical world is one of heartache at the time of diagnosis, but a saviour when you need them most. No matter how big their wages, they want what is best for you (as they see it). Ask specialists for advice, talk it over with loved ones, go back to the -ologists, and decide what you think would be the best way forward for yourself.

Don’t be like me, do not act all gung-ho in everything you do. Five weeks after my diagnosis, denial had worn off, I decided I was strong enough to put on the Lycra leotards of Superwoman, but after coming home from work in the evening, the staircase had transformed into Mount Everest, and I had no energy left to take the last sixteen steps to my bedroom (MS fatigue is absolutely NOT like normal after-work tiredness)

Superwoman?

Not in a million years!

Unrelenting fatigue became a daily, hourly, and half-hourly battle.

I was a workaholic, and my job was my life.

Lazy as a kid, workaholic as an adult.

I had become a liability to others and to myself.

Working overtime? Of course!

Brainstorming to help to move team forward? Of course!

The ‘No’ command I am selectively deaf to.

Battle of the wills

I received achievement awards and consider them as visible proof that MS does not have to be an obstacle.

Nevertheless, by the time I finished my Team Leader training, my body resolutely told me that now was not the time to move further up the professional ladder. Realizing this was hard, but breakdowns are not something I do. I was not afraid of showing weakness, but I would never allow myself to settle for anything less than I and other people deserve.

Either way, I had to give in. For a year or longer, I refused to listen to those who knew better than I did, after all, I didn’t have any shiny medical degrees and certificates hanging on my walls.

This was a battle I lost.

I retired from work, but in return, I received another chance on life.

Life with a capital L.

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blog-awards-2018_winners-gold-mpu-e1571651056851-12018 Winner Best Blog Post with ‘3443 Needles’, Blog Awards Ireland, Ashville Media Group, Dublin, Ireland
◾ Everyday Health: Top 10 MS Blogs to Follow in 2020

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◾ MyTherapy: Multiple Sclerosis Blogs: 10 of the Best in 2019
◾ Everyday Health: Top 10 MS Blog of 2018
◾ MyTherapy: Best MS Blog for Simplicity 2018
◾ Ireland Blog Awards: Finalist 2014, 2015, 2017; Winner 2018 (Awards competition discontinued since)


© Willeke Van Eeckhoutte and Ireland, Multiple Sclerosis & Me, 2011-2021. Unauthorized use and/or duplication of this material without express and written permission from this site’s author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to Willeke Van Eeckhoutte and irelandms.com with appropriate and specific direction to the original content.

One Comment

  • angloswiss

    There is so much I would like to say, but it would develop into a small book. I too have MS, diagnosed about five years ago, but the signs were there a long while and my neurologist says it had probably been around for about 30 years. I am now 75 years old and perhaps one of the lucky ones. I mainly suffer from fatigue in the legs, the left leg slowly deciding to leave everything to the right leg, so I tend to drag the foot a little. Now and again I had a boost, but I am surviving. I decided to remain as mobile as possible with my sccoter and attachment for walker, and also an electric wheelchair. I still go shopping, but a regular online user for goods deliveries. I have installed a large deep freezer in my cellar and are trying to keep my independence as long as possible. My husband also has mobility problems and cannot help me very well. The main problem is that when I fall I cannot stand up and so the ambulance arrives with two good locking strong men, or sometimes well trained ladies, they lift me up and I can walk again. Luckily it does not happen very often, but it happens.
    I am also waiting for the day when the long awaited cure arrives, if ever. In the meanwhile I try to maintain my mobility as much as possible. I wish you all the best and may we both be one day rewarded with the discoveries of science.

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