chronic illness, Health, life, mental health, MS

Exercise, the DIY DMT

It’s been a long six and a half years since my MS diagnosis, seven since the relapse that made teaching impossible, but I’ve healed more than I thought possible back in 2015.

I attribute my healing to various things, namely a healthy, stress-free lifestyle, low-dose Naltrexone (LDN), a healthy, mostly vegan diet, circadian fasting (more on that later), time in nature and in my garden, and a great dose of luck that this monster isn’t as aggressive for me as it is for some people.

The biggest factor in the last year though, has been exercise. I thought they were lying. When you barely have enough energy to breathe, how can you possibly exercise? Or, when you do have the energy, you go as hard as the ‘old you’ could manage, then end up in bed for days, useless as braces on a duck.

Much nicer with no braces.
Photo by Skyler Ewing on Pexels.com

So I decided I needed to be methodical about it, and make a commitment to myself to spend half an hour a day using it before I lose it. Never mind MS, age starts gnawing away at the natural strength you used to take for granted and it’s a slippery slope. If I can binge watch Survivor at the end of the day, surely I can carve out half an hour for exercise.

Remember the movie About A Boy? Hugh Grant’s character was a rich layabout who organized his days in thirty minute increments. It became wisdom to me when I was first on disability, and now at least one of those thirty minute chunks is devoted to exercise.

If the weather permits, my exercise is walking outside because it also checks off another important part of my morning routine which is at least 30 minutes of sunlight (or a reasonable facsimile thereof-gray skies are still beautiful). I’m all about efficiency!

Otherwise, I either ride the recumbent bike or do yoga or pilates on YouTube. There are some amazing channels out there, I’ll link a few favourites at the bottom. The trick is, pick the beginner videos. You have nothing to prove except a commitment to consistency.

I know, I know, you used to be able to handle intermediate or advanced, but remember the braces on a duck? While incongruous, it speaks nothing to the true pain you can cause yourself by trying to do too much too fast. Maybe we should picture a tortoise with a headband instead. Since I’ve been limiting myself to gentle but CONSISTENT exercise, I have finally been able to maintain an exercise routine and start to see and feel the benefits.

the tortoise→ MS Warrior

the hand → MS

The tortoise might be caught but he never stops moving!

My newer, all-time favourite paid exercise program, that I do two or three times a week because it always leaves me with a smile on my face, is BodyGroove. With catch phrases like “you can’t do it wrong” and “do whatever feels good for your body”, they have turned exercise into a fun way to connect with your body and dance like it’s 1988.

For each song, they introduce three different rhythms that are simple enough for you to interpret however you want but sooo good for your cognitive health. Check out these articles for all the benefits dance provides.

https://www.news-medical.net/health/Is-Dancing-Good-for-the-Brain.aspx https://www.sciencedirect.com/science/article/abs/pii/S014976341830664X

I’m not affiliated in anyway, I just think it’s a great program for anyone chronically ill, as they have all sorts of people demonstrating and showing how much you can do even sitting down. You don’t need any experience but I grew up dancing in a fairly serious way so I love that I can reconnect with that previous iteration of myself, even on days when the MonSter makes my movements sluggish and difficult.

On my darkest days, stuck in my bed, I dance in my head like I used to as a child. With strength, freedom and passion. Now, even on my mediocre days, I can push myself to do it because “you can’t do it wrong”. You need to move your body, so why not groove your body?

It was my oft-mentioned, well-respected naturopath, Dr Pamela Hutchinson that gave me the idea for the title of this post. Dr Pam believes that exercise should be considered a DMT(disease-modifying therapy), and my neurologist agrees that exercise is the single most important thing you can do to fight MS.

They’re not lying. Move your body, but gently. If you can’t commit to half an hour, commit to five minutes and build up from there. The important thing is to get or keep moving so we don’t lose any more of the mobility and strength that we still have. Fight the fight. You got this!

Top 5 exercises for the chronic illness warrior

  1. Walk – in nature or at least outside
  2. Yoga – Jessica Richburg https://youtu.be/zA5oxYvIx0c – Yoga with Kassandra https://youtu.be/6hZIzMpHl-c – Yoga with Adrienne https://youtu.be/v7AYKMP6rOE
  3. Pilates – Move with Nicole https://youtu.be/NyP_waVgL1w
  4. Recumbent bike – with a nature meditation video https://youtu.be/tck7E11SdR8
  5. Body Groove https://www.bodygroove.com

Amanda ❤️

chronic illness, life, Poetry

Voodoo Doll: MS Awareness

Huge stakes pierce my heels

Burning red hot fire

Millions of minuscule knives

Flay the insides of my feet

A giant vegetable peeler slices off

The bottoms

*

I’m sorry to those I squashed

Those I looked down upon

From any temporary high ground

I believed I held

I am your voodoo doll

And you will have your revenge

Over and over

*

The burning piercing spreads

To hands, up legs, then forearms

Who needs to work on abs

When they stay contracted constantly

Holding in the moans

And the nausea from the pain?

*

I’m sorry to those I squashed

Those I looked down upon

From any temporary high ground

I believed I held

I am your voodoo doll

And you will have your revenge

Over and over


I don’t really believe that my chronic illness is a matter of revenge, but it’s an easy trap to fall into when I’m trying to pretend all is well but the pain is overwhelming. I think of myself as a kind person but I know in my past immature, insecure life I wasn’t always the best person I could be. However, we can only go forward and try to do better.

Kindness is the answer.

❤️ Amanda

chronic illness, life, MS

Some people – Practice kindness

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

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

chronic illness, MS

Not all hugs are loving: MS awareness

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

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.

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