Riding a bike with MG

I grew up in the country, riding bikes everywhere because everywhere was too far to walk to. I would ride to the creek and catch bugs or pull algae off the top of the standing water in the ditches. I would ride with my siblings down the big hill and feel the wind rush against our faces. We would meet up with friends and all ride together. I remember riding to a nearby cemetery with a friend for a picnic.

In the summer my parents would load all 6 of our bikes onto the trailer and bring them to camp. We would ride bikes to church every morning. (My dad installed a book carrier on the back for my Bible.) We rode around camp looking to see which trailer our friends’ bikes were piled outside so we’d know where the party was at. When we got a bit older we were allowed to ride off the camp property and into town to get McDonalds.

When I moved to the city I was nervous to ride alongside cars but I practised. My husband and I rode to church. We brought the bikes into our little apartment to store on the balcony. Somewhere along the way my bike broke and my husband’s was stolen and we didn’t bother replacing either but always planned to.

Then I got sick and I figured I would never ride again. If I’m too weak to walk without assistance, surely I couldn’t ride a bike.

But I’ve been feeling stronger the past year (thanks to the pandemic for letting me cut most of the physically difficult things out of my life) and decided I wanted to give it a try.

I’ve always wanted a retro-looking bike and when I read reviews, multiple grandmas raved about how comfortable they are. I knew that was what I needed.

Thankfully we were able to get three bikes, one for each member of our family, amidst the bike shortages and before the most recent lockdowns.

I was nervous that this would be a failed experiment but it turns out that my myasthenia gravis gets along quite well with bike riding.

The thing that’s hardest for me when walking long distances is holding my back upright. My postural muscles give out long before my legs do, which is why I hold on to a walker. Bike handlebars keep me upright the same way my walker does.

The most difficult type of motion for me is one that is repetitive. Walking in a shopping mall where every step is the same is much harder than walking outside where the texture of the ground is constantly changing. Biking has a lot of variation built in, (like hills and turns) and I can adjust my feet on the pedals to target different muscle groups.

It may be a small thing but because I thought I would never be able to ride a bike again, this feels miraculous to me.

We’ve been exploring the bike trails and neighborhoods near our house. This bike has a carrier on the back as well but now I carry a picnic instead of my Bible.

This far

It’s 1 in the morning and I’m lying in bed unable to sleep.

My head is killing me. I’ve taken super strength Tylenol and a couple doses of Advil but i can still hear the blood pulsing in my ears and my brain feels pinched.

Falling asleep is usually a slow process for me and so I replay things in my mind to unwind. Then I move on to imagining the things I’m looking forward to. I fall asleep most nights visualizing my hopes.

But lately every future plan is tinged with fear. Hope is replaced with apprehension. I flip through my usual bedtime thoughts to try to find one that’s calming but come up empty handed.

How can life go on like this? How can we survive being trapped by this pandemic indefinitely? There has to be a breaking point, and surely it must be soon. This is untenable.

I flip onto my back and cry out to God – I can’t sleep. All I have in my head is pain and fear. What am I supposed to do? I’m stressed and restless and can’t sleep.

As soon as I voice it, I remember a conversation I had with my husband a couple weeks ago.

I told him “help me remember that when I’m feeling stressed and restless those are symptoms that I need more oxygen. I can’t recognize it myself when I’m in it.”

Immediately I realize that’s the problem so I flip on the light, grab my breathing bag (technically called a Lung Volume Recruitment kit) and pump up my lungs. And oh goodness does it hurt. It feels like lightning in my brain. I swoon a little, but then breathe normally. Obviously my lungs had been restricted for some time.

A couple more pumps and the tension is gone from my body, the headache has subsided considerably, and my mind is clear.

As I sit, enjoying the air, I see the embroidered wall hanging beside my bed. Bis hierher hat uns der Herr geholfen!

When I was young, it seemed all the women in my family had some sort of embroidered German saying hanging on their walls. Often they were scripture. Our move into this house last year coincided with my parents downsizing and my mom offered me this embroidery, made by my Oma years ago. When I received it I felt like I had finally graduated to full and proper adulthood.

But in this moment that’s not what struck me about the embroidery.

Bis hierher hat uns der Herr geholfen!

Thus far the Lord has helped us!

It’s from 1 Samuel 7:12 and it’s true. He has brought me this far.

In my pain addled, oxygen deprived brain I called out to God and told him my problem. “I’m stressed and restless!” And in my prayer, was the answer I needed. I needed someone to help me recognize my symptoms. I needed someone with me.

He is with me and he has brought me this far. Together we’ll move through whatever else is coming.

The view from my bed: the wall hanging, my pineapple lamp, and my mini-me doll. All things that make me happy.

Resolutions and intentions

A notepad on a table reads (in a child’s handwriting) ELLA’S resolution: read more books, do more yoga

Same, girl. Same.

Everyone’s taking about resolutions and intentions for the new year and I don’t usually make any because it seems arbitrary but I guess it is a good excuse to reflect and tidy up your life so here goes.

First, a resolution – I want to read at least one (preferably nonfiction) book each month. Last year I only read about four so this is a big increase but I think it’s feasible.

Second, an intention – or maybe it’s more of a mindset shift. And to be honest I’ve already been working on it for a couple months but I’ll continue to work on this over 2020 until it takes hold.

I want to change the way I think about my body.

I often refer to it as a prison and that’s because it’s truly how it feels. I’m stuck in this thing that hurts me and limits me and controls large portions of my life.

I know that words have power though and if we change our words our thought patterns will follow so instead of a prison I will think of my body as an antique house.

There’s nothing you can do to improve a prison when you’re a prisoner inside. You’ve been defeated and you have no control. But an antique house is something you can take ownership of. You can restore the finishes, replace the broken parts, spend some money and time and effort and end up with a place that’s quirky but quite comfortable.

When I get frustrated by my pain or limitations I’ll think of this old house as needing some repair and instead of giving up and eating a bag of chips, I’ll drink some more water and do some stretches.

Instead of getting mad that I’m moving slow and then being cranky at the world, I’ll lay down and get some proper rest.

I’ll wrap myself in warm blankets. I’ll take my meds on time. I’ll investigate alternative therapies. I’ll eat healthy foods. I’ll shower more so I don’t feel gross.

I’ll do what I can to restore this old house. It’ll never be perfect but it’s mine and it will be good.

Tools

Woman pulling a walker on wheels loaded up with hot dogs and bags of chips at an outdoor event.

At a community bbq last year one of the organizers thought I was so cool for using my walker to carry a family’s worth of hot dogs and she made me pose for the event photographer.

I remember a quote by Jesse Ventura going viral (before that was a thing) when I was a teen – “Organized religion is a […] crutch.

I heard a podcaster recently say “I used humour, not as a crutch but as a tool.”

Both quotes, although addressing very different subject matter, imply that a crutch is a negative thing –

as though using a crutch is an admission of weakness,

as though it’s something to wean yourself off of as soon as you’re able,

as though the crutch causes the weakness.

Full length selfie in a mirror in a hotel lobby. A woman stands with a cane.

in 1999 when the Ventura quote was popular I didn’t know enough to recognize the ableism behind the metaphor. Now, 20 yeas later I see it plain as day when someone specifies “not at a crutch but as a tool.”

What is a crutch if not a tool?

It’s definitely not a failure, although it felt like it when I finally gave in and admitted that I needed mobility aids.

My internalised ableism told me that I was too young, too independent, too strong to need those.

I would only use a cane around the house. I would avoid going out if I couldn’t walk independently. I would limp and stagger rather than lean on a stick.

A candid photo from behind of a woman walking with a cane. There are children walking in front of her. Outside in the sunshine.

It didn’t take too long to realize the foolishness of that position and now I’m never without my cane.

But again I had to overcome the ableist voices in my head (and sometimes in the world around me) when I graduated to using a walker.

I would only use it on my worst days, as an absolute last resort.

But after feeling the effects of a day spent with my walker – legs supported, back not screaming in pain, arms not exhausted from carrying my bags, the satisfaction of getting things done and still having energy when I got home – I quickly learned to love it.

Now I take it whenever it’s more convenient than not. It just depends on the day and what I’m doing.

I am less disabled when I have the right mobility aids with me.

A full length photo of a woman from behind as she pushes a walker down a large hallway. Photo was taken in the main atrium of the national Art Gallery of Canada.

There’s no way I could enjoy places like the National Gallery without my walker. (Also IKEA, the mall, any museum and Home Depot.)

I don’t have many photos with my cane or walker because I’m usually taking photos at a closer range. On the rare occasion when someone snaps a picture of me from a distance my cane or walker usually make it into the shot.

And I am always glad because in those photos I look like me.

Fully.

Needles (again)/SCIG

If you’ve been here before, you know I love my needles.  You’ll also know that I have many tricks that help me manage my Myasthenia Gravis.  But I haven’t written in detail about the biggest one yet.

For the first two years that I had MG I received monthly intravenous immunoglobulin (IVIG) infusions at the hospital.  Those two days spent sitting in the medical day care unit meant that I had three good weeks of movement and energy.  But as I went back to work, it was hard to schedule two days a month to sit in a recliner hooked up to tubes.  Factor in the IV Benadryl that immediately knocked me unconscious (meaning I got nothing done during those infusions), the achy flu-like symptoms that followed for the next three days, and the two rounds of asceptic menengitis and after two years of IVIG I was ready to try something new.

My doctor and I talked about subcutaneous immunoglobulin (SCIG) infusions I could do at home and it sounded like a perfect fit.  I’m already familiar with subcutaneous infusion from the insulin pumps I’ve work 24 hours a day for the past 18 years and I have no problem inserting my own needles.

So for the past two years SCIG has become part of my routine.  Twice a week I run an infusion.  I draw up 60 ml of immunoglobulin, which is a blood product containing other people’s antibodies, into a giant syringe (which make great bathtub toys afterwards) and connect it to a valve.  The valve controls how quickly the liquid pumps into my body.  I close it completely to start and then gradually turn up the speed as the infusion progresses.

I connect the valve to an infusion set which consists of three long tubes with needles at the end.

I load the whole mess into a spring loaded pump. Once I prime the tubes I insert the needles manually.  In the beginning I used my abdomen but it changes the tissue and makes my body feel different – softer, squishier, and more wobbly.  I didn’t really love the jelly belly I was getting so now I infuse into the back of my hips, love handles and bum

It takes between 3 and 6 hours to run its course – depending on how fast my body is absorbing the fluid and how high I set the speed. I have a little backpack to carry it around so I can do it at home while I watch tv and knit, or at work while I’m at my computer or in meetings, or while I’m running errands around town. I love that it’s so portable and that it gives me complete control.

Asked my daughter to take a photo for this blog post. Head chopped off, feet chopped off, but she got the infusion kit which is all I really asked for so, success I guess.

CBD, THC, OMG!

I’ve added a new tool to my repertoire and I love it. (I’ve previously written about my breathing bag, my K-tape, and my Gatorade.)

Do I look like a pothead? Two minutes earlier a lady in the hotel elevator invited me to the Global Marijuana March downtown Toronto.

I’d been curious about medical marijuana for a long time but was unsure about whether to use it, and if so – how? I’ve never done drugs in my life. I’ve never been drunk. I’ve never even smoked a cigarette. So using marijuana, even medically, was intimidating.

Back in October I finally took the plunge. My neurologist referred me to a cannabis clinic (which was coincidentally right next door to my pharmacy) and I went to ask about CBD oil.

I’d read that CBD oil has the physical benefits of cannabis – relaxed muscles and pain relief – but doesn’t have any mental effects. It sounded perfect.

And it is! I love it! It comes in a little bottle and I draw some up in a syringe and put it under my tongue. It tastes like weed but not in a bad way and I don’t feel anything.

No side effects. No noticeable effects at all actually. I can’t even tell that I’ve taken it except..

except for the absence of pain, the easy movement of my body, and the restorative sleep I get. When I take CBD I have a good day. I feel almost normal.

It’s amazing.

So when I went back in March I refilled my prescription and got another for an oil that’s 50%CBD and 50%THC (that’s the stuff that gets you high.)

I’d found CBD to be particularly helpful with sleep. If I take it before bed it’s like it erases all the damage from the day. It supercharges my sleep and apparently THC is even better for that so I decided to try it.

I used it multiple times before bed. Sometimes I’d take it earlier in the evening and I never really felt any mental effects so it didn’t seem any different that the plain old CBD.

Until I took some in the afternoon. Since the two oils felt the same I figured I could use them somewhat interchangeably (as long as I wasn’t driving or going to work. That would be irresponsible.) I took a very small dose and then about an hour later my daughter and I walked to the library.

We talked on the way there, we checked out some books, she played on the computer and I chatted with the children’s librarian whom I know quite well.

And then it hit me.

I was fine listening to him but when I tried to speak all my words were mixing. I’d have one story in my mind and a different one would come out my mouth. I could tell I was being weird.

So I told him. I whispered “I just took CBD oil with THC and I think I’m a little bit stoned!” I explained that this was a first for me. Ever. And he thought it was hilarious.

Which it was.

But I won’t be taking THC except to sleep anymore.

I’m still grateful for that supercharged, deep, restorative sleep. After a couple of long days travelling for work I’ll appreciate that tonight.

Selfie at the library building after I was feeling normal again (it didn’t last long – like I said it was a really small dose).

Breath (part 2)

Back in the summer I wrote about my difficulties breathing. There were about 4 weeks that I couldn’t get a full breath, and a few more weeks when things were better but still uncomfortable.

I remember being at work and realizing that I wasn’t really getting enough oxygen. I called an Uber, went home, and laid in the cool basement and slept off and on all afternoon.

In one of my moments of wakefulness I emailed my neurologist and asked what we could do to help my breathing muscles. She emailed back almost immediately and said she’d get me in to see the respirologist.

That respirology appointment gave me one of my favourite tools to date. I’ve written before about Gatorade and K-Tape and other things that help me but nothing compares to this one.

Its technical name is a Lung Volume Recruitment (LVR) kit but I call it my breathing bag.

I fill my lungs as much as I can on my own, then I pop the mouthpiece in and squeeze the bag while I take little sips of air to pump my lungs up all the way. There’s a one way valve in the tubing so no air can escape. I’ve been told this technique is called stacked breathing.

It’s amazing.

The respirologist explained that as my breathing becomes shallower, my muscles get tight (which I know and that’s why I use massage to help) and this includes the ligaments around my lungs. The breathing bag expands my lungs to their full capacity, stretching out those ligaments and eliminating the restrictions around my lungs.

If you have ever blown up a balloon you’ll know how it feels when it’s initially inflated just as far as the rubber allows… but as you keep blowing there’s that moment when the rubber starts to stretch and the balloon begins to grow.

That’s what it feels like in my lungs. Sometimes I can feel the different lobes and segments pop open and start to stretch, one by one.

I get a head rush as the oxygen floods in and the pain in my chest subsides. That burning, tightening, squeeze. It’s gone and there’s movement and air.

Also gone is the anxiety. Back in the summer my every thought was about getting more air. How could I reduce my movements? How could I open my diaphragm? How could I speak less? How could I breathe more?

Now I carry my breathing bag with me on days when I think it might get difficult and I don’t worry. Knowing that I will always be able to fill my lungs and get the oxygen I need makes me feel safe.

It allows me to talk, and walk, and move, and sing without fear.

I love it.

There is no flattering way to take a photo of yourself using one of these. I know – I tried.

All taped up

Unicorn hair and dragon scales may not be viable options for me but I have found some really helpful solutions. I’ve written before about how much Gatorade helps me with my Myasthenia Gravis and recently I found another tactic to boost my strength.

Kinesiology tape.

I kept seeing it show up in my Pinterest feed, boasting about how it can alleviate the pain of carrying a heavy pregnancy belly. It got be thinking that maybe it could provide support for my exhausted muscles as well.

I poked around online, analyzed where I had the most pain, watched some YouTube videos and headed out to Walmart to buy a roll of K-Tape.

I explained my theory to my husband, showed him a video tutorial and had him apply a giant black H on my mid/upper back.

I felt almost instant relief. The pinching pain between my shoulder blades was alleviated and I was able to spend much more time sitting or standing up. With tape I can make it through an entire workday without lying on the floor. I can attend more formal dinner functions without having to excise myself to go find a bench to lie on. I can stand up long enough to host events and lead training sessions at work.

A few weeks after discovering the power of the H, I was feeling some strain in my lower back and was on my way into a training class which would necessitate a lot of bending and moving around. I quickly explained to a coworker what I needed and went into class with a big X across my lower back. Pain gone. Mobility increased. Stamina extended.

I try not to use it too much so I don’t become dependent on it but the weeks I wear it (it lasts 4-7 days) are noticeably easier than the weeks without.

Now I’ve started buying different brands so I can compare their effectiveness and longevity. So far K-Tape lasts the longest but the Dollar Tree carries a brand of thinner tape which is great if I just need a temporary fix but don’t want to commit to an entire week.

It feels so good to have options and more importantly, to find solutions.

OMG


When I was diagnosed with diabetes seventeen years ago the doctors gave me a “sick day plan”  to help me manage my sugars through a bad cold or flu. (Illness does weird things to your blood sugar and once you add in the drop in activity levels, and not being able to keep food down, it’s almost impossible to keep things level.) On my sick day plan it said to drink Gatorade so my mom stocked our pantry and made sure we always had at least two bottles, just in case.
And it helped. A lot. Gatorade had been my secret weapon for battling illness for years so when I started realizing that my IVIG treatments made me feel crappy, I ramped up my Gatorade consumption.
And it worked. IVIG stopped making me feel so sick. So then any time I was having a bad MG day I’d drink a Gatorade.
And it made things better. My body moved easier. My muscles ached less. So I wondered, what would happen if I drank Gatorade every single day? I decided to try it.
And it changed my life. My quality of life shot way up and since I started this I have maintained a much higher level of functioning than I’d had in the previous two years.
Oh my Gatorade. It’s amazing stuff.