Category: life

chronic illness, life, mental health

Milestones and Reflections

Amanda, walkamyelinmyshoes

At the beginning of June, I celebrated the first year of my blog. It was a huge step for uber-private me last year but the response once I finally faced my fear and hit publish was unreal. I can’t believe I have over 500 followers. More importantly, I can’t believe the support I’ve received and the friends I’ve made in this wonderful community. I’m so grateful. Thank you all. 💕

On this day four years ago, I received my MS diagnosis in the morning before going back to school for the last afternoon with my class. I didn’t know it would be the last afternoon I would spend as a teacher at the time.

It’s been an interesting journey, to say the least. The physical symptoms, especially the fatigue, stopped me teaching but the mental gymnastics associated with being chronically ill really stopped me in my tracks.

Fear, grief, anxiety, depression, guilt. Oh, the guilt! Learning to say ‘I can’t’ – especially to my children, forcing myself to stop when I ‘should’ get a little more done, unable to enjoy the good days because I ‘should’ be working.

I’ve learned to mostly maintain perspective when the anxiety and depression hit because I know it’s temporary, no matter how black. The fear hits pretty strongly when my body does it’s weird party tricks. (numbness, tingling, burning, buzzing, dizziness, tinnitus, spasms, trembling, pain and the fatigue that courses through my veins. #msawareness)

But life is scary for everybody in one way or another. Perspective.

The guilt has been the nastiest of the negatives. It comes up over and over and I’ve struggled to gain the same perspective, especially on the good days. I’d love so much to be back in the classroom that when the uglies lessen a bit, I forget how bad they are and feel I should at least try to go back to work. When they inevitably reappear, I remember why I can’t do the job I love so much.

Four years on, I’m done with the guilt on my good days. I won’t compromise the health I’ve regained since I stopped working by forcing myself to go back to work. And I won’t waste the bonus time I do get feeling guilty anymore, dammit! So there, MS. 🤗 From now on, I’m doing ‘jazz hands’ any time the guilt creeps in – haha!

This day marks a milestone for each of our younger children as well. After knocking our socks off at her Variety Show on Monday singing ‘Defying Gravity’ – (check out my instagram or facebook for the video), our youngest is finishing her last day at elementary school. It’s truly the end of an era, as we started there an unbelievable 15 years ago when our eldest was in kindergarten.

Our son is finishing his last day of high school, heading across the country to study Economics at Western University in September. Needless to say, we are incredibly proud of his achievements so far and excited for him, but there will be a big hole that will take getting used to. It’s all as it should be and we can’t wait to see where he goes with his life. This kid is motivated!

Finally, our eldest got her first car so now we have our own taxi 😉 she’s embarking on a whole new level of independence and financial responsibility. We have no doubt she’ll manage her shiny new car with her usual attention and responsibility, and have lots of great adventures in the years to come.

❤️ Amanda

life

Infrared Sauna: Flu killer

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

chronic illness, life, mental health, MS, Quotes

Pain and anxiety

Amanda, walkamyelinmyshoes

I had another post scheduled for today, and then this happened…

My body has been happier for the last month or so than I remember it feeling for a few years now. My mom and I had a mostly wonderful outing to the theatre today(Saturday). We watched an incredible tribute to the phenomenal Leonard Cohen by Les Ballets Jazzs de Montreal.

Normally I print the tickets at home but for whatever reason I chose ‘pick up at box office’. We had to wait outside in the beautiful but freezing cold day (for Victoria standards – we’re wimps compared to most Canadians 😉), and by the time we got into the lobby, the MS monster was in full force.

Right or wrong, I resorted to a glass of wine which always calms the shakes and the nasty. Despite the plastic cup with a lid, I spilled all over my light purple pants. Nice. Of course, if I’d been wearing black it wouldn’t have happened. 🤣

Anyway, the following spilled out of me a few hours after I got home today. I wanted to share because I imagine it’s not an uncommon feeling. The pain’s bad enough but coupled with the anxiety of whether it’s signalling a relapse makes it almost unbearable.

I’m going to assume that when I wake in the morning, after this post is published, the monster will have retreated again and I will keep on keeping on. To all the warriors out there, I send you courage and positive vibes in the battle.

❤️ Amanda

The pain heaves my stomach and sparks my anxiety.

It’s like too much blood in my foot, pushing out against my skin.

The foot wants to fold in half too, a taco of toes.

I breathe out against the pain, hoping it’s that my shoes are too tight.

The pain gets worse lying in bed later, legs bare, unconstricted.

There’s a python in my leg, squeezing, squeezing until I can’t breathe.

I move the leg to dispel the pain but it follows me, hungry.

I reprimand the foot.

It’s the misfiring of neurons, it’s not really happening.

A futile attempt.

The pains roars louder.

I swallow the nausea, blink against the headache.

The pain runs up and down my leg, into my arm, my jaw, my shoulder, my back.

It’s everywhere.

Controlling my body and my mind, I’m lost in the misery.

Then the anxiety yells above the pain.

Is it happening?

Will I be down for the count?

Is it going to take me out for good this time?

I want to cry.

I want to hide.

I want out of this body.

I feel the grimace on my face and try to correct it with a smile.

A smile marinated in pain, a crone’s smile.

My face slackens, my mouth sliding down my chin.

The foot is sharing, pain travelling up my leg into my hip socket.

A live wire sizzling its anger from the inside.

My eyes squint, I swallow the lump of tears, blink away the moisture.

Crying won’t help, it makes the headache worse.

Lie still, lie still, breathe it away.

Shoulders tense, jaw clenched, abs contracted to hold it down.

Now the python’s in my arms too, too much blood in my whole body.

A burning tingle numbing my body and mounting my panic.

It circles my ribs.

They click together, compress my lungs.

I take a long, slow breath but my lungs won’t fill.

My tongue tingles.

I swallow the nausea again, the bile crawling up my throat.

The wrinkles deepen on my face, crevasses of pain.

The pain shoots down to my big toe, throbbing its nasty foulness.

The python circles my throat and I choke on my saliva, coughing and sputtering.

I hold my neck, coaxing the muscles to relax, the python to release its grip.

The panic screams but I have no time for that right now.

I need to breathe, to relax my body before I turn to stone.

But if I relax, the python will take over, squeezing me until I burst.

Nothing makes sense, the pain clouds reason.

No focus except stopping the python, controlling the panic.

The worry that it’s not here just for tonight.

That it wants to settle in for awhile.

Stopping my life again. Ocean, beach, waves, rocks, quote

You never know how strong you are until being strong is the only choice you have.
life

A Lesson in Grief

Amanda, walkamyelinmyshoes

Death leaves a heartache no one can heal, love leaves a memory no one can steal.

A year ago this week, my mother lost her husband. They had been married less than five years but they made the absolute most of every minute they had together. Theirs was a great love story.

Joe was a special person. Sometimes people say that to be nice after someone dies, but he was truly an incredible human being. Some people exude a particular kind of warmth and caring, which makes us lesser humans crave being in their presence. That was Joe.

As shocking and tragic as his death was, only three weeks after his 80th birthday, where a huge community of family and friends came out to honour him, I learned an important lesson from my mother about love and grief. In the midst of her heartbreak at losing the love of her life, she already had it in perspective.

Rather than wallowing in her grief and their short time together, she focussed on the fact that they’d had any time at all. Five years of a great love provides countless wonderful memories, and is more than many are lucky enough to experience. It’s better to have loved and lost, right?

RIP Joe. I feel so fortunate to have known you. We all miss you so much. I love you Mom! Hug your loved ones and don’t wait to say the important things. Life is precious and fleeting.

Have a wonderful week!

❤️ Amanda

chronic illness, Health, life, MS

Tips for staying healthy in cold and flu season

Amanda, walkamyelinmyshoes

The germs are a-coming!

As we approach colder weather and months spent mainly indoors, all the bacteria are getting ready to party, waiting for those unsuspecting souls who will help spread the news and invite those snot-making, cough-producing little buggers into your home and mine.

Having a chronic illness means that a simple cold can knock you out for weeks, if not months, instead of days. People may consider me a germaphobe now but having suffered from pseudo-exacerbations – not a real relapse but just as much fun – after getting the sniffles makes me wary of those invisible little suckers that are everywhere.

Before The End, my years working in the germ factory, aka an elementary school, honed my skills at preventing the spread of colds and viruses, beyond the obvious of washing your hands well, and frequently. So here are my top five tips for staying healthy and preventing the spread of colds and flu viruses this winter.

1) Don’t touch your face.

This may sound strange but if you start paying attention, you will notice how often you touch your nose or mouth. No matter how meticulous our own hygiene, other humans with filthy habits are everywhere, touching everything. Becoming aware of this will cut down on an enormous amount of germs that you let in without even thinking about it.

2) Change hand towels and dishcloths daily.

Excessive? I don’t think so, not when all the germs that come into the house are being wiped off hands and surfaces by those towels.

3) Don’t shake hands.

Yes, people sometimes react like I’ve offended them when I say “I’m sorry, I don’t shake hands in flu season.” That’s okay, I look at it as a public service announcement. Shaking hands is an outdated practice from a time when humans weren’t quite so crammed together. I don’t need to touch you to tell you that I’m pleased to meet you.

4) Use your sleeve or wear gloves when touching surfaces in public.

When opening doors, pushing elevator buttons, or using stair railings, wear gloves or use your sleeve. Sometimes it’s not possible to use your sleeve and you might feel strange wearing gloves inside, in which case don’t touch your face and wash your hands asap. Ultimately though, who cares really if someone thinks you’re a pretentious nut job if you wear gloves indoors – you won’t be snarfing into tissues and hacking up a lung. Seems like a better deal. Maybe we can start a new trend?

5) Wipe doorknobs and light switches weekly.

Starting in bedrooms and working your way through the public rooms, to the bathroom, the front hall and finally the front door(inside and out), give them all a good wipe every week. You don’t need to use the nasty chemical antibacterial crap either. A solution of 3/4 vinegar, 1/4 water, 20-25 drops of tea tree oil and 10-15 drops of lavender oil will do the trick nicely. There are some ‘green’ products that come in handy wipes and if that makes it easier, then go for it. I always use one to wipe down the shopping cart at the grocery store.

A few other things that help me through a potentially snotty season are:

* Oil Of Oregano – if I feel that I’m getting sick I put 5-10 drops under my tongue and wash it down with LOTS of water. It’s an acquired taste.

* Zinc – a tickle in my throat and I start downing the quick dissolve zinc tablets.

* Infrared sauna – if you haven’t tried one, I highly recommend it. I know lots of MSers can’t stand heat so it’s not an option for everyone. I only stay in for 15-20 minutes but it’s a very different, less oppressive heat than a traditional sauna and I can feel it zapping those nasty buggers while I’m in there.

I am not a health professional in any way but I have found these things have helped me avoid getting sick for the last two years. Of course, it could be that my immune system is on overdrive all the time and addicted to my myelin so other germs never have a chance. Not worth taking the chance.

One final public health announcement: If you do get sick, PLEASE STAY HOME! There is a misguided belief in our capitalistic society that it’s a badge of honour to show up at work even when you’re at death’s door. Or to send your kid to school when they’re dribbling booger snakes. Really you’re being an asshole.

Caveat: Single parents reliant on a single pay check are not assholes in this instance. This is where we need to reconnect as communities and help each other out as family, friends and neighbours. Everyone needs a support system.

Noooo! We need to get over this mentality.

I used to say to my students, there are lots of things we should share with each other, germs are not one of them.

Do you have any good tips to share for staying healthy? Let me know in the comments.

Stay healthy, my friends. Have a wonderful week!

❤️ Amanda