Multiple Sclerosis.

You’re here.

Not residing anywhere else but here, inside me.

Nine years and counting. Probably a lot longer if you really want to play dirty.

Why did you choose me when there were so many other people you could have picked? You were probably out for vengeance for working too hard and resting too little. You probably thought it would be fun seeing me cry at the bottom of the staircase when I was too tired to go upstairs. Did you now, did you truly think it was slapstick-funny?

Have I not been living with enough illnesses already that you had to add yourself to my central nervous system like a piece of superglue or Velcro? I had my second abdominal surgery a mere three months before you crashed into me. You took over my eyes and created new levels of distress in my body, pain I never knew even existed.

For five agonisingly long months, my old GP thought I had severe ear infections, but I knew that was the wrong answer. I saw specialists who said my ears were just fine when your trigeminal neuralgia took hold of the left side of my face. Talking while yelping of pain truly was a novelty. I went to dentists, ENT doctors and other intelligent people who had no idea what eye and facial pain even felt like.

On a cold, dark, wet February day around 6AM, I dragged myself into A&E after another bout of antibiotics that didn’t do what they were supposed to.

You just didn’t want to leave.

Your vicious facial pain gave me two options: either I could throw myself under a bus, or I could go to hospital. Had I not been proactive and walked to A&E, saying I would not exit the hospital until I knew what was wrong with me, God only knows what would have happened.

That morning became even more poignant when I later learned that the nickname for trigeminal neuralgia is “the suicide disease“. Oh, I really hit the jackpot this time because according to medical professionals, facial pain is one of the most painful conditions, even worse than childbirth.

Really hit it.

Four days after checking myself into hospital, I learned I had “a very high probability of MS.”

Five weeks later, you were here.


And for the rest of my life.


“I thought you were just another Monday morning case when you walked in,” my consultant said, followed by lots of apologies and the promise that I would be very well taken care of.




You. Here, physically residing in my brain.

I took immediate offense to your presence and your timing.

Two and a half years after moving to Ireland.

“You got some nerve,” as we would say in Dublin. No pun intended of course.

How dare you take over my life?

How dare you change my relationships, professional life and upset my family and friends?

Two of my friends blatantly said they couldn’t handle my illness; one ran off, the other one I had to let go with a lot of pain in my heart because our friendship was based on a lie.

My family? They’re my rock, my everything. Some also said things that made me tremble inside of hurt because they don’t know what it feels like to live with my misshapen brain. “Stop wallowing in self-pity” when I couldn’t attend a birthday party. People using my memory issues to cloak their lies.

The worst thing of all, I had to retire at the age of 36. I loved my job, I loved working hard, but you took that away from me.

It’s no fun having to take anti-narcolepsy tablets like they are candy. Without them, I can’t make it through the day. Without them, I fall asleep after 2 or 3 hours. I am now taking a total of 29 pills and one injection every day. You, you ignorant, selfish, disturbing illness did all that to me.

But, I’ve already shown that I won’t let you win, MS. No way. You try, but I won one battle already. I survived a superbug, remember?

You keep trying, though.

Where was the manual that showed me how to adapt, accept and live?

There wasn’t one.

At all.

MS just hits you like a ton of bricks, and the rest you have to figure out yourself. No two people are alike with MS, so you really outdid yourself making each of us different. MS has 50+ different symptoms, and multiple sclerosis just wants you to go through it alone.

I never asked for you, I never wanted you, so I sure as hell want you gone. For good.

I figured you out, though.

I got you… yet I won.

I won love where I thought there was none.

I won wisdom and an entirely new philosophy on life.

In need, you truly learn who your real friends are. I found trust in those that stuck around.

You don’t own me MS; you don’t get praise for having me. No matter how bad you treat me in the future, I will own you instead.

You’re you, and I’m me. One thing I will never lose is the knowledge that I conquered you. Perhaps not physically, but mentally I am stronger than you.

You’re here to stay, but I won.

I won yesterday.

I win today.

And I will win tomorrow also.


© WVE and Ireland, MS and Me, 2011-2014. Unauthorised use and/or duplication of this material without express and written permission from this blog’s author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to WVE and Ireland, MS and Me with appropriate and specific direction to the original content.

21 thoughts on “A powerful letter to my MS

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