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.
Oh no, isn’t that just typical?! I’m so sorry that. after you’d been feeling better than you had for a while, MS took a turn at such an awful time. I wouldn’t have worried about my clothes with spilling my drink, I’d have been peeved at having wasted some perfectly good (and probably quite pricey being in the theatre) wine!! What you’ve written underneath is so poignant and you’ve described how you feel so well. Hugs to you, lovely.
The way you’re handling it with grace and a touch of humour is amazing, keep on being awesome. I do hope things settle for you a little again over the next week. xx
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Thank you so much!! Haha, I was totally peeved about the wine – $8 for a thimbleful!! Happily, the monster retreated overnight, leaving me just extremely fatigued today but not in so much pain. A bed day for me. 🙂 Thank you again for your wonderful comments, I really appreciate it! 💕
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Love you
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Love you too!
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Im reading this and i want to hug you. They say here in SA at the movies. Dont be clueless, be queueless. Lol. I try to be early.
Sorry poor attempt at humour. 😉
I can only imagine how you felt when the cold set in. I have cold issues, a brown Indian going blue doesn’t look good. I prayer the monster retreats and all is better soon. I send a hug. 🤗
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Thank you lovely. You totally made me laugh – I always pray for queuelessness. A brown Indian going blue – haha, the visual. So not funny though, it does brutal things to your body, doesn’t it? Feeling a bit better today though so the anxiety has receded. Phew! Hugs back to you, my friend! 💕
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Im glad rhat you are feeling better. I send warm hugs from a beautiful South African morning. 🌺💖🤗
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Mmm, I feel the warmth, thanks love!! 💕💕💕
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Perfect description. Thank you. I see you, friend. Today mine is the MS depression. I don’t have beautiful words like yours to describe it. Thank you for sharing your gift of words and validation. ❤️ Gentle hugs, my MS Sister. I hope the morning brought some reprieve.
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Thank you so much, Stephanie. Your comment means so much to me, I appreciate it more than I can say. Thankfully, the pain has lessened so I’m feeling better today, just exhausted. Sorry the depression is sucking you under today. Sending you positive vibes and gentle hugs right back. 💕
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Oh Amanda! I am so sorry for your pain. That sounds utterly horrible. How are you now? I don’t have the same illness as you, but when I get pain that is real bad, I get the same anxiety – is the cancer back? It’s so grue. We DO have to just push on – but it’s real hard at times. Lots of love to you Amanda xx
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Thank you so much, my friend. Feeling better today, just tired. I imagine that anxiety is a huge factor when you’re dealing with cancer. Sending prayers and positive thoughts that the bugger leaves you alone forevermore. Love to you too, sweet. 💕
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And prayers for you that the M.S. bugger leaves YOU alone for a while. I do know pain constantly, but not as bad as you have described it. Like you, my issues wilk always be with me, but we press on don’t we! But oh, those pale purple panrs! They sound gorgeous. Hope you can get the stain out. I spill stuff down me all the time,with being blind, and having wobbly hands, and I SO related to what you were saying! I am glad that you expressed in thus pist, but nit glad that you had to go through that! Hugs to you. Xx
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Thanks love. They’re my favourite pants so if the stain doesn’t come out, maybe I’ll have to dye them with wine – haha! Xo
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Oh lol. Can you buy any more the same colour?
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I doubt it, they’re a few years old – like most of my clothes! Ah well, life happens.
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Indeed it does. Anyway, hope you feel better soon x
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Thanks chica, have a great day!!
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Smiles
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Oh Amanda thank you for sharing your story with us. Now I know what you have to go through with such an awful disease. You are a brave warrior, my friend 🙂💕 I hope the next day you felt a little better. Warm wishes
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I am better today, Christine, thanks. Thanks for your kind comments, they mean the world. Hugs to you! 💕
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I’m happy you are doing OK today. I worked with someone with MS and I watched his struggle over the years and he was always so positive. I am in awe of him and you. Both of you so brave ❤️
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💕💕💕
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I am so sorry that happened but it does sound like a beautiful outing. Wish it could have gone better. I do not have MS but I have epilepsy. When it flares up I become a huge klutz and drop and spill things. I had a myoclonic seizure in the grocery store while holding my phone, dropped it and now the face of my phone is shattered and it no longer works properly. I also dropped and broke my vaping mod which made me not want to waste money on another because I would drop and break it again. So I returned to smoking (I know, bad me) and my son is very unhappy with me. Then there is the spilling food and drink on myself also, accidents in the kitchen, etc. I do hope things have improved when you awaken and your next outing will go better.
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Thank so much for your kind comments, you can obviously relate. That sounds incredibly frustrating, especially breaking expensive things like phones and vapes! I am feeling better today, tucked in my cozy bed for the day. I really appreciate your thoughtful wishes and comments, thank you. 💕
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Wow. So descriptive and very powerful. And heartbreaking.
I do hope you wake tomorrow as if nothing ever happened.
Slay that Python
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Thanks so much, Billy. The python sleeps, just left exhaustion in its wake. 💕
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I hope you’re feeling much more like yourself today. The fear that a relapse is looming is awful, isn’t it? Let’s hope it passes soon, and that the relief when it does is just as strong.
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Thanks Erin. I am feeling better but still not great so I’m anxious that it’s the start of the slow slide into winter. Trying to stay positive, the constant mental gymnastics are exhausting!!
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Thank you for sharing. Sounds so scary. Hope you are doing much better now ❤
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Thanks so much. Better-ish at least. I appreciate you reading and commenting, thank you!!
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First, I am so sorry for my delayed response Amanda. I really hate you went through this. I know how darn difficult it can be and I wish there was more I could do for you. I am really glad you are feeling better and now you most certainly deserve a nice glass of wine! Sending you lots of love and warm hugs!
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Thanks lovely. Sadly it triggered my winter slump, not sure this will go away until the warmer weather now but you just have to keep on keeping on right? Hope you’re feeling well these days!💕
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Cold temperatures tend to send many people into a winter slump because it gets too darn cold! The colder temperatures ALWAYS make my pain that much worse, but you are correct, we just need to keep going on. I hope things get better soon!!
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I know this happened a while ago, but I hope you’re feeling better.
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Thanks so much. I am feeling better but it seemed to be the trigger for the downward slide into winter, all the old symptoms popping up. Meh. Focussing on Christmas excitement though, so it’s all good! 🙂
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In my prayers. I feel ya!
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Thanks lovely! 💕
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