Month: June 2019

chronic illness, life, MS

Some people – Practice kindness

Amanda, walkamyelinmyshoes

I had a really wonderful then upsetting experience yesterday. I was in the ‘accessible’ lineup at the grocery store – simply because it was the shortest line, I’m still totally mobile. I left my cart to get another item and when I came back the cashier had put up her ‘closed’ sign but said I was fine because I was there before she closed.

As she was checking me through, very attentively asking me about the weight of the bags, saying how she was always careful because you never knew if someone had had shoulder surgery or something and how would you know?

Wonderful awareness for invisible illness, which is rare, but in the meantime, an older (72-ish) gentleman in a motorized wheelchair was waiting at the end of the belt trying to get her attention. When I signaled her, he asked if she was closed for a single bag of chips. She explained that she had no choice, she had to close and not take any more customers.

The man was understandably shocked that as a visibly disabled person she couldn’t bend the rules to make his day just a tad easier. To be fair, she was a lovely young woman who was following the rules – too young to really understand the implications of rigid rule-following.

I offered to check the chips through on my account, had her scan them and passed them back to the man. He insisted that I take the money from his bag and seemed a bit offended when I offered to pay. Finally I begged him to let this be the nice thing I did for the day and he laughed and let it go.

Then he got stuck. In the accessible aisle.

I offered to maneuver the chair but he said it was too heavy. It just took time for him to figure it out with his fisted hand that he could hardly control as he was wedged between the two counters.

He looked up at me and said, “This is just what it is to have MS.”

After a gulp, I responded, “I have MS too. I’m not where you are but I get it.”

He looked at me with tears in his eyes, went back to un-wedging himself and when he was free said, “Thank you very much. I really appreciate it.”

A wonderful exchange. Simple human caring and courtesy.

As I finished checking out, I saw that the same gentleman was slowly making his way out of the grocery store. A woman about my age was behind him with her cart, maintaining a respectful distance as he tried to make his body makes its way out of the store.

Just as he was almost through, a man with a single item, again about my age (ie.not a teenager or early twenties, ie. SHOULD KNOW BETTER) came up behind and yelled, ‘BEEP! BEEP! BEEP!’

WTF? Are you kidding me??

The asshole is lucky I couldn’t catch up with him or he’d be needing an ice pack.

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. Not to mention that my husband and his mother also went to the same school!

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 in our family 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.

So it’s the end of June and the beginning of summer vacation. The garden’s in great shape, the kids all have exciting plans for the summer, and we have lots of camping planned in our new tent trailer. It’s going to be a great summer!

❤️ Amanda

life

Walking on the moon – Gabriola Island

Amanda, walkamyelinmyshoes

Instead of camping in the very wet rainforest on the west coast of Vancouver Island, I took my second camping trip of 2019 on beautiful Gabriola Island, one of the Gulf Islands between Vancouver Island and the mainland. The landscape was incredible, sandstone rock formations and erosions all over the beaches and a beautiful, dry forest to tent in.

I didn’t bring our new trailer because it hadn’t been safety inspected yet so I wasn’t going to drive it up-island to Nanaimo where I met my camping partner-in-crime and we caught the short ferry to Gabriola. Good news – the trailer checked out beautifully, all she needs is a new set of tires! We’ll get that done next week before our upcoming trip to Saltspring, another Gulf Island.

It really did feel like walking on the moon in some places.

Do you see the face in this photo? 😑

Unbelievable sunsets!

Of course, a wonderful visit with one of my dearest friends was the biggest highlight. I’m not sharing details about that though – the less said the better. I’ll just say we earned our camping battle scars. 🤕🤣 😏

I’ve decided to stop being a sugar cookie (you should listen to this if you haven’t yet) and push myself beyond the very careful parameters I’ve been living in since my diagnosis, out of anxiety of causing a flare or exacerbating symptoms. I’ve been reluctant to make plans, to put too many things on the schedule, always feeling the monster lurking in the background, waiting to attack.

Truth is? Since I’ve been pushing myself to get my butt out of bed in the morning despite the pain and fatigue, I’ve felt better and better. Once I get going, I’m distracted from the awful ache and I get focussed on getting things done. I tell myself to get out in the garden just for half an hour every day, to do some light weeding and pruning, seeding or harvesting. Almost always I end up out there for at least a couple of hours, getting steps in, bending, stretching, reaching and using this body of mine. It may be a tad defective, but it still works! Use it or lose it, right?

I may have overdone things by going on three rides at the fair with our youngest – the monster didn’t like that and symptoms have creeped in again. Whatever. So worth it.

Like Nike says – just do it.

❤️ Amanda