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 ❤️

life, mental health

Learning to Be

The world has stopped. The unthinkable has happened and we’re in crisis mode, trying to get our heads around this ‘new normal’.

I’ve been here before.

No, not exactly like this, obviously. But almost five years ago, my world stopped when I finally admitted I couldn’t teach anymore. I’ve been adapting to my new normal ever since. It’s been a bumpy ride, but there have been many surprising blessings as well.

Learning to be. This is a big one. We are so inundated with messages telling us we need to be doing something all the time. There’s a culture of busy-ness, where the more you’re doing is like a badge of honour. When you have a chronic illness, that’s not really an option because the fatigue, among other things, is so killer that You. Just. Can’t.

So you spend a lot of time at home, sitting around, isolated, without a whole lot of options for entertainment. Sound familiar? I’m sure it’s a new experience for most healthy people, and it can be uncomfortable just sitting in your own skin sometimes. Or maybe that’s just the MS. 🤔

But just being, instead of always doing can be a wonderful opportunity to get real with yourself and figure out what’s really important. We’ve been conditioned to believe we need to be working, be productive, be entertained, be adventurous, be travelling , be consuming, be socializing.

We’ve forgotten that sometimes it’s important to just BE.

When you stop doing and sit quietly with yourself, your mind has space to process. This is why meditation has become so popular. But you don’t even have to be that organized about it. I’m not knocking meditation in any way, I’m just suggesting that you pay attention to whether you take any time during your day to stop doing and just BE.

Staring at nature is my go-to for times when I need to stop and be for awhile, even if it’s just out the window, or the nature channel on TV. I guess that’s technically doing something but the mental health benefits outweigh any slicing of that proverbial hair.

We’ve been running on the societal treadmill for so long that doing nothing, just BEING is a difficult thing for many people right now. I get it. Like with anything though, a shift in perspective can change this strange situation we’re finding ourselves in, into an opportunity to examine our values and decide if we really want to go back to the “old normal”.

As much as I miss teaching, I am grateful every single day for my many blessings. Learning to be comfortable with just being and not doing all the time has helped me enormously in accepting my new normal. I hope it helps you too.

Just be.

Hummingbird in flight feeding
Look what you can see when you stop doing for a few minutes. Just be.
Photo credit: Amanda L. Callin

❤️ Amanda

life

Christmas: pressures and perspective

So, I was ‘voluntold’ yesterday by my youngest that ‘we’ were providing the vegan gingerbread house kit for her and a friend for the class contest on Friday. Ummm… okay? 🤣

I love that she knows I love to bake so assumed I’d be happy to do it. Happier that it doesn’t occur to her that I’m carefully pacing myself at the moment so I can make it through the holidays without the MonSter rearing it’s ugly head too far. One of the perks of an invisible illness when it comes to your kids, at least when you can…

But it’s always smart to remind yourself, chronic illness or not, that it’s not worth pushing beyond your limits. Everyone owes it to themselves to take time for self-care, to take things off their plate when necessary and to ask for help sometimes.

The whole season should be about being cozy and spending low-key personal time with your people. Let go of the consumer, commercial side of it and focus on what matters. You can only do what you can do, and good enough is good enough. Otherwise, you…

The best thing I’ve started doing since I finally got decent running shoes is getting my butt out the door every weekday for a 20 minute walk. Sometimes it’s a few minutes more, but never too much because in the past I would get back into ballet or yoga and go too hard, setting myself back several steps. So now I’m the tortoise not the hare, and I find I look forward to my walk each day and it sets me up well for the day ahead. There are days when 20 minutes doesn’t get me too far…

But I’ve only missed one day, when the wind was too much for my sensory issues, and then the last couple of days when I needed to brave the crowds to finish the Christmas shopping. Now I will get out there every day if possible because I know it’s the single best thing I can do to make it through our busiest Christmas season ever, and enjoy it.

Finally, chronic illness or not…

Depending on how things go, I may post one more time about the vegan gingerbread house. If it’s a total fail, maybe not, so…

Wishing you all a restful, joyous holiday and a healthy, peaceful New Year.

❤️ Amanda

MS

Raw

I need to know

Do other MSers feel it too?

A sudden rawness

Burning

Tingling

In the tongue

Lips

Palms of hands

Soles of feet

Eyelids

MS?

Is it the myelin being destroyed

By my own cells?

Most uncomfortable

Anxiety-inducing

Go away now.

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