3443 Needles

Yoga image

This is my favourite pose.

Stretched out, in an apparent hug with what could be the floor or a bed.

But, do not be confused, for I am not that hung up about yoga.

I wasn’t on that day, anyway.

No, this rather resembles my all-time, never-changing, loudly-snoring daytime nap, and I just happen to find myself in a position where I want to stretch my mind into domination.

You.
Will.
Stay.
Awake.

For 12 straight hours.

Twelve?

Yeah, baby! Twelve!

That, at least, was the plan 10 days ago when I had my neurological checkup.

This was going to be the day where I would stride into my neurologist’s waiting room armed with a furiously analysed plan to demand a change in my disease-modifying therapy (DMT). The intention of leaving with nothing less than a victory was palpable within each nerve fibre in my face, sending shockwaves into my brain and back again.

After 13 years of either thrice-weekly or daily MS injections, I had it.

I bloody-oh-so-bloody-had-it.

Now, you do the math and forget about the 1,5 years of injecting three times a week. Let’s just go for the big one.

An 11-year stretch of daily needle pricks.

4015.

4015 pinholes I deliberately plunged into either my thighs, belly or arms. Four thousand, give or take.

Over an 11-year period. Give or take that too.

The space between my stomach and knees started to cower into submission each time they heard the noise of the needle being unpacked, or when they saw it closing in on my skin.

I have no place left in that area that hasn’t been haunted and taunted by needles.

But, let’s travel back to last week.

By the time I entered the hospital, all my energy already left the building and the intentional stride and imagined victory looked like a drawn-out, wilted dance in slow motion. Nevertheless, I would try and win my battle of Waterloo, even if it would be somewhat more diluted than first imaged.

After an hour and a chat with the counsellor, the MS nurse, the blood clinic and MS nurse again, there he was. My saviour. the one who would rule over thousands of future pinholes.

He was no Napoleon, but I was fine with that.

Forty minutes later, the verdict was in. Going from a daily injection schedule to a weekly one.

Wow.

Finally a change in Disease Modifying Treatment.

Sure, I would’ve preferred other means of knocking MS out by a new DMT, but I am not a neurologist. I am just the carrier of a) an illness that can’t be cured; b) one that will leave marks of degeneration as I get older and c) one that only managed to destroy dreams and create new realities.

I can shelve the idea of “Who am I to shout for newer and better means, right?”

But, I left with an already planned out new weekly injection schedule.

Willeke-Maya being a very practical-minded Willeke-Maya, I immediately looked for the other, brighter and shinier side of the coin.

Allow me to add some calculus.

11 years of daily injections… 4015.

11 years of weekly injections… 572.

4015 – 572 = 3443 needles that will not harass my body anymore.

No doubt about it, I can live with that.

Part two of the ferociously thought-out plan was to be enforced a few days later, with the arrival of a fancy injection “pen”.

And its side effects.

Oh dear.

“You’ll feel a little bit like you have the flu, plus your existing MS symptoms will get in on the act also, so you need to take time out to rest. It’ll also take a lot of time before you’ll see improvement, like, months!”

Say, what?

The following day, I wanted to shout, “A little bit like the flu? I feel like my body’s been through a tree-crushing machine before being squashed between an Oreo. And that’s an understatement.”

Kinda.

Mucho.

I love the unawareness doctors live with. Some are so preppy and naïve and such. Sending you for tests as if you have nothing better to do aside from being this ill entity that feels like a test bunny.

“So, wanna run a marathon in my shoes, doc?”

Here I am so…

Stage 3 of my MS-curriculum has now begun. A new DMT.

Rebif, 1,5 years, done and dusted.

Copaxone, 11 years, done and dusted.

Avonex. Side effects. Well, they weren’t joking when they wrote ‘AVONEX can cause serious side effects’ in their patient safety information.

Readjusting life. No biggie. Listening to new doctors, updated pharmacy schedules, obeying a wretched, old body that doesn’t want to match the validity and strength of mind.

But, as per usual, I cannot but swing the pendulum of love and life the only way I have been forcing it to go the past 13 years. Every cloud has a silver lining. Every last page of one book is the start of a new book.

And while a new treatment schedule might seem daunting to those who are not faced with a situation like mine, it is the beginning of a new aspect of life for me.

In the meantime, I apply an Occam’s Razor principle of sorts to life in general by using the simplest of answers on how to deal with a complex illness.

Adapting to side effects is just one bit of silver lining for the time being as I will have plenty of the following:

Books.

Studying.

Writing.

Watching lots of Irish and Munster rugby games.

And… looking forward to at least 3443 needles that will never get to pinch me again.

signature IMSM

© Willeke Van Eeckhoutte and Ireland, Multiple Sclerosis & Me, 2018

#EDHbestblogs #MultipleSclerosis #MS #LifeWithMS #MSLiving

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Quirky, tenacious and neurologically compromised female expat living in Ireland since 2002 ◾ MyTherapyApp Best MS Blog for Simplicity 2018 ◾ Everyday Health Top 10 MS Blog of 2018 ◾ WEGO Health Patient Leader Award Nominee 2018 ◾ Feedspot Top 50 MS Blog 2017, 2018 ◾ Ireland Blog Award Finalist 2014, 2015, 2017 & Shortlisted 2018 (competition ongoing) ◾ Contributor to the Novartis MS blog Living Like You ◾ Contributor to MS Ireland’s blog MS & Me ◾ Contributor to The Mighty ◾ Guest contributor to MyTherapyApp.com

7 thoughts on “3443 Needles

  1. I was on Avonex from September 2012 – September 2016. You are absolutely correct about the side effects! For the first 4-6 months I had vomiting, mild limb paralysis, and weekly migraines from the Devil after each weekly injection. This did lessen to occasional migraines the day after injections and limb paralysis on the injection leg, the left was always the worst.

    After my insurance company informed me Avonex had been removed from my approved drug list (formulary), 2 exasperations 1 month apart, a quad study MRI, discovery of spinal lesions, and my increased dependency on a wheelchair; I was switched to Aubagio.

    Since then I have had less to no flairs. But perhaps after being diagnosed 6 years ago (suspected onset was perhaps actually 16 years ago) I can’t help wondering if it is truly stable or moved to secondary progressive. Only time will tell.

    I cannot worry about that just live for the day.

    Thank for sharing!

  2. I still remember the overw2helming feeling of relief I felt when I gave myself my final Avonex needle, to then have a short break from medication before going onto my lovely daily little Gilenya capsule. And I only did just over needles over two years … I feel like a sook now, seeing your needle numbers. But I’m done with the needles now, it’s the G for me, until the cure is found, haha.

  3. It reads with a punch when the number totals appear! And the second punch for me is that my number is higher. Starting on May 1 of 2000, I stopped just days before 18 years. Not sure when my transition was from 7 to 3 days, but it was a celebration. The skin flattening they so daintily call “dimpling” is the least of my body image issues, but there is honestly no where left to inject anyway. Here’s to new treatments!

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