All the light we cannot see

White matter disease workkidssleep

So, life threw me a curveball at the end of last year. Turns out, it was a game-changer that I never saw coming.  All the light we cannot see.

Because of headaches and white spots in my vision (which turned out to be nothing), the Doc sent me for a brain MRI scan. The lead up to the MRI was nerve wracking enough.  Feeling like Mike Myers with the helmet I had to wear covering my face, and the hum of the machine was like a haunting melody. Underscoring the anxiety that coursed through my veins as I lay there still.

White matter disease workkidssleep

Routine

The routine was standard procedure but an hour after leaving the radiology place, I get a call to go back for a contrast scan.  Because I know what this is, and what this means, the tears streamed as I waited in line for my hot chocolate in a busy café.  A few silent hours in work, surrounded by staff and I was back in the hot seat, or hot bed. Before I went back in for the second scan, I asked to speak to someone about why I needed it, what did they find the first time around?  A young Dr came out, nice enough guy, introduced himself and I asked him to explain his findings.  And to please talk to me like I’m 12 years old.

White matter disease workkidssleep

He tells me the brain is made up of 2 areas, grey matter, and white matter.  Grey matter is the outside hard shell, and white matter is everything on the inside.  He tells me the cables and wires (aka all the nerves) are protected by a layer called myelin.  Turns out the myelin on my brain is disappearing, meaning my cables and wires are becoming unprotected and are venerable to damage.  He says 75% of people will get this, but usually when they are 60-70 years plus, and therefore he wants to look again because I am so much younger. He tells me the official name is White Matter Disease, and that it is incurable and progressive, meaning it will get worse as I age.  I ask him what this means for me and how will it affect my life to which another bomb shell drops, like a brain disease isn’t enough.

White matter disease workkidssleep

The Destination?

The White Matter Disease he diagnosed me with on this grey day in October has some links to Multiple Sclerosis (MS). It’s not certain that White Matter will evolve into this, but it’s a possibility. The definition of MS is the demyelination of the brain, which is what is happening to mine.  MS is a whole different ball game, affecting the central nervous system and causing all sorts of adventures. The connection is a bit like having a roadmap to an unknown destination – it suggests a possible route, but the journey itself is still a wild ride full of twists and turns.  So, here I am, riding the wave of uncertainty, knowing that MS might be somewhere on my horizon, but trying my best not to let it dictate my today.

White matter disease workkidssleep

Rollercoaster

Thoughts and feelings? Well, the photos of my brain on my phone are very cool, but also a looming reminder of uncertainty, and I’m not gonna lie, it’s kinda scary. Some days it’s all I think about.  Having Stephen Hawking style MS, not being able to walk, talk, eat, even losing my vision.  Other days I’m feeling confident that I won’t let it affect me, I won’t get MS and I will grow old without any bother.  But hey, life doesn’t come with a manual, right? We must roll with the cards we’ve been dealt.  All of our endings are unplanned.

White matter disease workkidssleep

Future Me

Living with it means not having the whole script. I’ve got another MRI test in 3 weeks and a date with a neurologist next month. What will they find? No clue. What will it mean for me? Still a mystery.  But here’s the thing – knowing I’m not in control of my future is weirdly freeing. It’s a reminder to live life to the full every day. Yeah, I know it sounds cliché, but seriously, who knows what tomorrow holds?

Rhian Author workkidssleep ________________________________ Written by Editor, Rhian Cable #workkidssleep editor workkidssleep Mum, Wife, Marketing Specialist and Blogger – Living life every minute. > Follow on Website | Facebook | Instagram | Bloglovin’ ________________________________ Written by Editor, Rhian Cable #workkidssleep editor workkidssleep Mum, Wife, Marketing Specialist and Blogger – Living life every minute. > Follow on Website | Facebook | Instagram | Bloglovin’

So, what’s next? I’m taking it one step at a time, learning to dance with the uncertainty. My 3rd holiday since that fateful appointment is coming up soon, I am all over the brain training apps, something that will apparently help, along with healthy diet and exercise.  I don’t have a crystal ball so I’m just focusing on making the most of each moment. Cheers to facing the unknown with a dash of Welsh courage! The future might be unwritten, but that doesn’t mean I can’t make the most of the present. Here’s to living life to the fullest!  Cheers to the unknown, the journey, and squeezing every drop of joy out of today.

Rhian Author workkidssleep ________________________________ Written by Editor, Rhian Cable #workkidssleep editor workkidssleep Mum, Wife, Marketing Specialist and Blogger – Living life every minute. > Follow on Website | Facebook | Instagram | Bloglovin’

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Written by Editor, Rhian Cable
#workkidssleep

editor workkidssleep

Mum, Wife, Traveller, Marketing Specialist and Blogger – Living life every minute.

> Follow on Website | Facebook | Instagram

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Hi, welcome to WorkKidsSleep. This blog is all about my thoughts on life and modern day living, rearing children while being a working Mother, setting up home on the other side of the world, living life while I can, family travel and all the in-between.

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