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.
Category: 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.
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
Pain and anxiety
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. 
Tips for staying healthy in cold and flu season
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.
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
Walk a Myelin My Shoes 