March 2019 – Walk a Myelin* My Shoes

chronic illness, MS

Not all hugs are loving: MS awareness

March 29, 2019 Amanda, walkamyelinmyshoes

It starts with a stitch

A few deep breaths

Then you’re knitting my ribs together

With barbed wool

The front

Then the back

Swirling into my abs

Then my lower back

A corset of pain

The cat the cow

Stretching every way for relief

Breathe

Distract

It’s just a physical thing

I hug myself hard

To try to get you to let go

Nothing helps

Just breathe

I’m writing this as I’m experiencing a common MS symptom, known as the ‘MS hug”. I’ve always been a hugger but this is not the kind of hug anybody wants to experience. When people refer to multiple sclerosis as a MonSter, it’s for good reason. It sneaks up and attacks when you’re at your weakest.

I’ve been fighting the cold from hell, downgraded from the flu thanks to the infrared sauna. I’ve also been living through a bathroom renovation which has been more stressful than I anticipated. Yeah, I’m a dumb ass. No actually, it would have been less stressful if I had managed the job myself. Okay, yes I’m a control freak and a perfectionist. But if you want something done right, you might as well do it yourself.

So – stress. The worst enemy of anybody with a chronic illness. Hence, the MS hug and an increase of all the other symptoms that make me feel like Beetlejuice in that electrified way, minus the energy.

Good times.

Just breathe.

❤️ Amanda

life

Bathroom Renovation Part 4: Almost there…

March 27, 2019 Amanda, walkamyelinmyshoes

Did you hear the dude from Star Wars heading for the Death Star in the title? Every time I hear those words together, I hear it in his voice. Think I’ve seen it too many times, if that’s possible.

Bathroom Renovation: Part 1 – It’s a Go!

Bathroom Renovation Part 2: It’s a Bathtub?

Bathroom Renovation Part 3: Now that’s a tub!

Anyway, we’ve been in a holding pattern waiting for the vanity pieces (supposed to be last week) to be sprayed and the countertops cut (also supposed to ‘fit us in’ faster than their usual two-week turn-around – it’s been two weeks). Such is life.

Luckily, the toilet, tub and shower are completely functional (well, for most of us – see below), the tile is gorgeous, and I’m super happy with the shower door. Totally functional and much cheaper than custom glass.

Check it out:

And right out of the way for a bath or cleaning!

Beautiful ‘right-height’, skirted toilet. Easy to clean!

So, there is a problem with the shower, as I mentioned above. It wouldn’t be a problem if all our children were munchkins like me, but our son has sprouted like Mike TeeVee after the taffy machine (our girls are in the Willy Wonka musical, couldn’t resist the reference). And… the rain shower head is about 1/2 an inch from his noggin.

Not sure what the solution is, or who will be expected to pay for it. We’ll see when the plumbers come back to install the sinks. Overall though, the work is being done beautifully and I know when we get ‘there’, we’ll nail this sucker down, just like good old Luke.

❤️ Amanda

life

Infrared Sauna: Flu killer

March 25, 2019 Amanda, walkamyelinmyshoes

We made it the whole winter with nary a sniffle, then the first day of spring our eldest woke up with the flu. Then our youngest succumbed. It’s a nasty one too, (what flu isn’t), fever, dizziness, headache, nausea and a deep, retching cough.

Having MS, I’m pretty paranoid about getting sick. Simply because what could be a three week ordeal for a healthy person, could drag me down for months. So, I followed my Tips for staying healthy in cold and flu season. Oh, and ate LOTS of garlic! 🤭

Still, the achy, weak fatigue descended. Although, it was difficult to tell if that was the flu because it’s pretty much how I feel all the time. It was when the cough appeared, painful as a badly scraped knee, accompanied by a killer headache that I knew it got me.

So, that’s when I followed my ultimate tip, and got myself into the infrared sauna. I stayed in for thirty minutes two days in a row, and while I have a cough and a bit of a headache, I believe the heat of the sauna staved off the worst of it. It’s like having a fever to kill off the nasties, without having to go through the nastiness of a fever.

A lot of people with MS suffer from heat intolerance, and I’m one of them depending on the day. The kind of heat produced in an infrared sauna is different though, not at all like the dry heat of a traditional sauna, or the sun. I find that if I don’t do it very often, it doesn’t affect my symptoms at all.

And if it killed off those flu bugs before they took a real hold, it’s definitely worth it. Mind you, my other theory is that my immune system is so overactive, that it might not have got me as badly even without the sauna.

Other MSers, do you find that don’t get sick as often or as badly since you had MS? Probably it’s like everything with this crazy disease, different for everyone. Well, I hope none of you have been ravaged by the flu this year, and if you feel something coming on, I strongly urge you to find an infrared sauna near you.

Stay healthy, lovelies!

❤️ Amanda

Book recommendations, chronic illness, reading

Book Review: Cull by Tanvir Bush

March 16, 2019March 16, 2019 Amanda, walkamyelinmyshoes

As an aspiring author, I’m always on the lookout for new authors that inspire me. This book appeared in my Bookbub offerings in February, and I was immediately interested, for obvious reasons. The title and the cover speak volumes. (see pic below)

It’s disturbing to hear so many stories about disabled people being further victimized by the attitudes and prejudices of the healthy. When the government jumps on board to legislate discrimination in the guise of rooting out the lazy, lying abusers of the system, the results are truly frightening.

Are there people that abuse the welfare system? Absolutely. Should all people who are already dealing with the challenges of chronic disability live in fear that they will be accused of ‘milking the system’? I won’t answer that, but we know that it happens all too often.

When I first had to give up teaching and go on disability, one person said how lucky I was and that I should go surfing. Um…okay? It’s ignorance, a blissful ignorance of not knowing what it feels like when your body betrays you and all the things you have taken for granted, are taken away. I wish everyone such ignorance.

For those living that reality, further victimization through government policies is very much part of the whole journey. I am fortunate in Canada to have been supported through the process but I hear horror stories from people in the States and the UK about fighting for benefits and not having enough money or proper insurance to afford medication or adequate healthcare.

We know the effects of stress on the human body, and on chronic illness in particular. I can’t imagine living in that kind of fear day in and day out. Tanvir Bush has taken this situation, and in a brilliant satire, given the power back to ‘the crips’. Her protagonist is blind, as is she, and she has the most amazing guide dog, Chris.

Her writing is exceptional, the way she describes the world from the dog’s point of view is brilliant, and overall this book highlights so many important facets of a world that is disturbingly similar to ours. You want to read this book! Amazon links below.

⭐️⭐️⭐️⭐️⭐️

Website for Tanvir Bush and The Holey Vision Blog