200 days

200 days

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200 days.

Being a perfectionist, of course, it had to be precisely 200 days.

Six months and nineteen days between my first multiple sclerosis symptoms and its very diagnosis.

Little did I know that it would eventually transform my life.

It was September 2004, and I had just dropped off my mother at Dublin Airport for her return to Belgium. On the way home, a strange sensation took hold of the left side of my face, as if it had been injected with thick rubber. Thinking nothing of it, I went back to bed to catch up on lost ZZZs.

I slept for hours.

And hours. Continue reading “200 days”

Mental or physical, your choice

10906095_10152968660468908_3270331244306118983_nAfter the fun-filled celebration of having to scroll further down age-selection forms on the internet yet again, I felt rather bemused at how fast life was whizzing through highs, lows and the “despite this/that…” moments.

So, once the usual questions “How’s the facial pain going?” as well as “Willeke, why do you never smile at the camera?!”, I wanted to give as much information in one sentence as possible. Sometimes it’s good to be low on energy as it automatically stops you from talking about “that” subject for the rest of the day.

“That” → MS. Facial pain. Or pain, period. Continue reading “Mental or physical, your choice”

Fake it ’til you make it!

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Close your eyes for a few seconds, and imagine the type of person I will describe to you.

It’s someone who has Samuel Beckett’s “Ever tried. Ever failed. No matter. Try Again. Fail again. Fail better” personality. Trying to bend negatives into positives. Seeing cause and effect in an ever expanding circle. Someone who 95% of the time, will not throw in the towel or run away because it’s the easiest solution. Perhaps a “mens sana in corpore sano” person, Latin for someone with a sound mind in a sound body. A non-drama queen (or king). It’s not someone who wants to be one tough cookie, it’s about being a whole tin of tough cookies.

Perhaps you are that tin of tough cookies, or you strive to be one of the cookies within the tin. Continue reading “Fake it ’til you make it!”

Multiple Sclerosis: The First F____ed Fortnight

A very beautifully written post by my friend Emma, who goes over her first few hours and days after her MS diagnosis.

“There’s no doubt, it has been raw, it has been ugly with cursing and swearing, lost relationships dodgy decisions. But I everyday I make peace with myself, I give thanks that I have another moment to live. Because there were times when I didn’t see any hope. I was soaked in blood, sweat and the tears of a thousand years.” (Republic of Emma)

Continue reading below…

Republic of Emma

The early days are the most ‘challenging’ as in it is like a dirty dangerous whirlwind where emotions, words and all sense of self goes whizzing around. The day I walked into Mullingar Accident and Emergency room, I was wearing my jeans and a t-shirt that had seen better days. Two weeks later, not only was that t-shirt gone, the Emma who walked into A&E had disappeared, stepped into a bizarre place of chronic illness and dis-ease.

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Multiple sclerosis- multiple scars? I had brain damage? Those fifteen seconds, when those words went from the consultant’s mouth to my ears, a little part of me died… I picked up the pieces of my broken heart but I still think of old Emma sitting on the edge of the hospital bed and the new Emma, getting up and stumbling, in a post-traumatic shock way, into a new life, a new way of…

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The miseducation of…

2a368fe3a25dc33b8327e836159894ecIt’s all been a bit crazy since that first day of the New Year came peeking from behind that cold, frosty door. It’s now an icy, jaded Saturday morning in the north-west of Dublin, and the RBS Six Nations rugby tournament just started.

Utter bliss so. Red cheeks from absolute delight.

On Monday, I have a new appointment with my neurologist, and with two separate eye doctors in hospital a few days later. Somebody should let me hire a very fancy suite in the hospital, as there’s no point going home and back again twice afterwards, especially since my energy supply is limited.

Am I dreading my neurological checkup? In a way, yes. After 8ish years on my DMD (Disease Modifying Drugs) Copaxone, it just doesn’t work anymore. The four-month relapse last year was proof enough. The idea of relapsing again is a scary one indeed, so I aim to find the right words and ask for an upgrade of my therapy. Continue reading “The miseducation of…”

Resilience

I can be changed imageSince writing my article about depression five days ago, and my mum’s 7-day visit to Ireland, I feel a shift has taken place in my mind.

I am not 100% there yet, but I am well on my way to finding uncompromising resolve again. Many grand and tiny gestures have contributed over the last 4-5 weeks, and are still willing me forward today. Of course, the backing of friends and family, as well as my medical team definitely helped.

Most of all, though, I had once again come to the realisation that I unfortunately need more sleep than the average, healthy person. At this stage so, I must start considering my continuous fights against tiredness and “forgetfulness” about needing a lot of sleep, as a pure character flaw. Continue reading “Resilience”

Strength = choice

An invisible illness isn’t a choice.
My visible hope is.

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A powerful letter to my MS

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?

Continue reading “A powerful letter to my MS”

MS: lesson in minimalism

Can I let you in on a little secret? It’s something meaningful and I’d like to share it with you.

Before getting all philanthropic and philosophical, having multiple sclerosis is not a nice thing. Or a happy thing. Not when you’ve just been diagnosed. It’s a long road to acceptance.

In between hearing ‘You have MS’ and saying to yourself, ‘You know what, I am OK with that’, you will find yourself falling over (sometimes literally), you will feel awful because of side effects of your medication, and you will sometimes curse at your body’s lack of accomplishments.

Being diagnosed is definitely something you never thought would happen to you. Continue reading “MS: lesson in minimalism”

Finding Her Here, by Jayne Relaford Brown

“I am becoming the woman I’ve wanted,

grey at the temples,

soft body, delighted,

cracked up by life

with a laugh that’s known bitter

but, past it, got better,

knows she’s a survivor-

that whatever comes,

she can outlast it.

Continue reading “Finding Her Here, by Jayne Relaford Brown”

Letting go

Life seems like a joke, out to get you when you least expect it.

People disappear from your life, but it’s not until after they’re gone that you realise how much you liked being around them. Or, you understand what being truly happy means because you’ve known absolute sadness. Or you start appreciating silence because you know how loud, annoying and horrible noise can be. Life seems like a joke so; it makes you learn lessons by applying the opposite of what you want. Life is a joke in an ironic way.

Murphy’s Law had it in for me years ago. Anything that could go wrong went totally wrong. In the space of 3.5 years I lost part of myself (thank you MS!), and my only sibling, stepdad and four other people in my family passed away. My dog had to be put to sleep because of hip dysplasia and six months later, I also stood with one foot in my grave after an acute hospital infection. That same year I broke my tailbone on my first day back at work after an absence of 3 months. One week later, I was on a plane because my dad had had a stroke and exactly one week later, I stood by his graveside.

I felt cursed and chased by the death card from a Tarot deck. Continue reading “Letting go”

What MS feels like in your mind

How does MS affect your life?

Questions like this roam around the minds of those with MS, wondering how others feel about the illness they share. Or people without MS, like your family, your friends, just curious how you are really feeling. And then there are those that ask that question as well, simply because they don’t believe a word of what you’re saying.

These are questions I sometimes ask myself, because the symptoms come and go, change and get better or worse. Disappear altogether while new ones appear. So what goes on in your mind with the constant changes? Knowing what MS feels like if you have MS yourself, that kind of makes you an expert patient… Of yourself. Continue reading “What MS feels like in your mind”