chronic illness, life, mental health, MS, Quotes

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. Ocean, beach, waves, rocks, quote

You never know how strong you are until being strong is the only choice you have.
chronic illness, life, Partners/Caregivers, Quotes

The Ones Who Stay

Wedding, love, commitment, relationships

They gave each other a smile with a future in it. –Dream a Little Dream (1989)

Many say the words, then real life begins. Money-Children-Family-Work-Sex-Hormones-Communication-Health. So much joy, so much stress. How to keep the train on the tracks?

Relationships are difficult at the best of times. When chronic illness invades that relationship, whether through one of the partners, a child or another family member, the pressure of the everyday realities of chronic illness creates a potential power imbalance that not all partnerships are able to withstand.

One of my very first posts, Shoutout to Partners, was not planned until I read the plethora of Facebook posts about chronically ill people being abused or abandoned by their partners. Helplessness, resentment, financial burdens and sadly disbelief, seem to be the primary reasons partners flee.

So what about the ones who stay? The ones who are there to pick up the slack when you hit the wall and have to get horizontal? They are special humans, those ones. They may not always know exactly the right thing to say or the right thing to do, but they’re there. They stay.

In sickness and in health. Whether you did the official thing or not, when you decide to share your journey with someone, commit to riding life’s rollercoaster together, that’s sort of a given. The problem is, most people don’t think about chronic illness until they’re drowning in it. And there are some who will push you out of the lifeboat to save themselves.

If you’re chronically ill and are lucky enough to have your person, even if that’s a friend not a life partner, remember that they’re on this journey with you. As much as we need support to stay sane when feeling like crap day in and day out, we need to be cognizant and appreciative of the experience of our partners. Hug your partner/friend/support person today!

Chronic illness can be terribly isolating. For those that live alone or have been abandoned by or left toxic relationships, even more so. For those people, I encourage you not to give up hope. Not everyone is strong enough to handle chronic illness if they have a choice, but they are out there. Don’t give up hope.

In the meantime, I’m always here. If you need someone, please reach out.

Have a wonderful week!

❤️ Amanda

If you want to see a great but obscure 80s movie, I highly recommend Dream A Little Dream, starring the infamous Coreys and the wonderful Jason Robards. My brother and I were obsessed with this movie when we lived together one summer during university. Here’s the trailer:

chronic illness, life, Quotes

Managing expectations

A tree grows out of a large piece of driftwood.

This quote, adapted from Alexander Pope, struck me as quite negative when I first saw it. Then I realized that it does not refer to those with no dreams or goals, but rather to those who are able to recognize that life doesn’t owe them anything, and that there is beauty and power in the moments when life switches direction or ends as you know it.

There is no roadmap to life. No guidebook, no manual, no training but the experience of living it. Holding tightly to expectations of how life will turn out is a recipe for bitter unhappiness. After almost five decades (say what?? 😱) of experience I have learned that flexibility, the ability to roll with the inevitable punches, is key to managing stress and finding happiness in our busy world.

When you have a chronic illness, there is a new layer to managing expectations. A large part of the learning curve is pacing yourself. You go from being able to handle a full-time job, all the responsibilities of being a parent and/or spouse, running a household, socializing, volunteering and anything else you feel like doing, to measuring out your spoons every day.

And that’s okay. There are many ways to live a life. The challenges and suffering in our lives are what build character, so even in the darkest moments we can try to be thankful for this crazy, magical life we’ve been given. Being present in your life, not dwelling on how you thought things would turn out, or worrying about what the future will bring, in short having no expectations but instead a huge amount of appreciation for the blessings of existence itself, leads to a beautiful life.

Easy? No, of course not. Worth it? Definitely.

Please watch the video below to hear an amazing perspective from a woman who was sick and dying her whole short life. RIP Claire Wineland. 💕💕💕

I’m off to my writing retreat this week. I’m really excited but freaking out a little bit. Okay, a lot. Update when I get back.

Have a wonderful week!

❤️ Amanda

life, Quotes

No day but today – Fight the trumpidemic!

525,600 minutes in a year.

That’s 1440 minutes every day that each person has to make the myriad of choices, big and small, that we all face daily.

Ultimately though, the one choice that will really make a meaningful difference in this world, both for individuals and for humanity as a whole, as trite as it may sound, is LOVE.

If we can tap into that emotion every day, especially the dark days, and more importantly show it in our actions, the haters can’t win.

I was lucky enough to see Rent onstage in Vancouver twenty years ago, two years after its debut. Rent is a rock musical written by Jonathan Larson, who died suddenly at 36, the morning of its off-Broadway debut in 1996. Talk about no day but today. RIP Jonathan.

I listened to the soundtrack on my road trip last month because the Victoria Operatic Society is performing the musical this fall. My nine year old will be disappointed there are no suitable roles for her. ☺️

Rent is loosely based on the opera “La Bohème” by Puccini, which concerns starving artists in Paris in the 1840s, facing the tuberculosis epidemic. Rent places the struggling artists in New York City in the 1990s, facing the AIDS epidemic.

In 2018, the messages of both these great works are more important than ever as the world faces the trumpidemic that threatens to tear apart the United States. Is that melodramatic? Maybe. I hope so.

As a white, cisgender woman growing up and living in a middle class neighbourhood in Canada, I have been spared the horrific abuse I see hurled at the marginalized, though even as a young girl it hurt my heart to realize humans could treat each other so badly.

Now being a member of another marginalized group, the disabled, I have an inkling (the teeniest for sure) of the challenges so many people face in being accepted and valued in our society.

Diversity, tolerance, love, friendship, hope, despair, addiction, disease, discrimination, the class divide and the death of art – timeless themes that we human beings should have a better handle on by now.

Instead, a Muppet-like wannabe dictator (sorry Jim Henson) a misguided, heartless president is sowing the seeds of hatred, intolerance and bigotry through his ridiculous Twitterganda and isolationism.

The strongest weapon against his particular brand of nastiness, is LOVE. Seasons of love, people, that’s what we need.

No day but today.

Have you seen Rent? If not, I highly recommend! The actual musical is way better but they did a great job with the movie which includes most of the original Broadway cast. It’s on Netflix. 😊

I propose we start a new hashtag movement. It seems the haters and the trolls are the ones who spend time and energy spewing hatred online. Rather than wasting our (precious spoonie) energy by engaging in a useless attempt at intelligent debate, let’s drown them with a tsunami of #fightthetrumpidemic and #chooselove hashtags every time they comment.

In order to stem the tide of ignorance and hate, we have to overcome the apathy, stop talking amongst ourselves and start fighting back. Who’s with me?

Heart shaped clearing in the clouds framing the words.
Fight the trumpidemic. Choose LOVE!

Thanks so much for stopping by. Have a wonderful week!

❤️ Amanda