chronic illness, MS

Not all hugs are loving: MS awareness

Amanda, walkamyelinmyshoes

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. I’ve also been living through a bathroom renovation which has been more stressful than I anticipated. Yeah, I’m a dumb ass. No actually, it would have been less stressful if I had managed the job myself. Okay, yes I’m a control freak and a perfectionist. But if you want something done right, you might as well do it yourself.

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

Published by Amanda, walkamyelinmyshoes

ms warrior, gardener, writer?, daydreamer, beach comber, kitchen dancer, lucky Mama, happy wife

32 thoughts on “Not all hugs are loving: MS awareness”

  5. Ah yes, stress = bathroom renovation. I remember all too well. Managing it yourself does eliminate some of it – and nothing wrong with wanting things Done Right!! (that’s my motto!).
    Flaring of your MS symptoms is a nasty byproduct and is…one. more. thing. Ugh.
    Feel better.

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  8. Oh, Amanda! Are you better yet? I know that hug so well and it is definitely NOT one that I enjoy. Not exactly what a friend of mine meant when he wrote “I know why hugs feel so good. Two hearts are never closer than when two people hug”. He was losing his battle with AIDS, while I was fighting that particular hug in my own way. And having been “blessed” (blast!) with MS since the age of 11 there are times when I want to put an end to people hugging me because they just don’t know what is going on inside my normal looking body. Weather doesn’t help much either. Don’t know where you are but here in Kentucky we are having a few days of sunshine and warmer air followed almost every Thursday by cold, clouds, thunderstorms, high winds and more cold weather! The colds we are almost over each week flare back up on Thursday. But I digress. Hang in there kid. I’m in my 65th year of living with those MonStrous hugs, headaches, fatigue, and still going strong when not on the floor from the latest fall. Just have to keep checking whether I can bounce yet or not! Praying for you. 😇💖

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    1. Thank you so much for such a lovely comment. The hug has released its grip, thank goodness, now just the usual twinges and tweaks. Since age 11 – wow! That’s a long battle. Thanks for the follow, I look forward to getting to know you better. Have a wonderful day! 💕

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      1. So glad you are feeling better now. Yep I think I might be the oldest person with MS in my area, and frankly I’m getting tired of it. As far as I’m concerned it can just go away any time now! This is my rant for the day. I’ve been hurting since the middle of the night and it is getting on my last nerve, so knowing you would understand I decided to vent for a moment. All better now, and sense of humor beginning to return.
        65 years is a long time, and at age 76 now it wears me out at times but I wouldn’t wish it to go over to someone else. Of course there have been a few people I could easily wish had to spend a few hours inside my body just so they might learn to be a little bit more understanding before passing judgement. My worst battle has been with the overwhelming fatigue, and when people see me all they see is a very normal looking person who just lets the house go most of the time (getting worse by the day at the moment). Those are the ones I would love to put inside my body for a few hours just to see how much they can get done!
        And here I am venting again. So sorry. Just feeling a lot of pain today because of the weather. More rain in the forecast and in my personal joint forecast. Sometimes I wish I could turn back the clock a few years and see if I had better times when I was younger, but then I remember too much of those years to want to go back. I hope I can get to know you better Amanda. I’m just not online much any more. Feel free to contact me at anginoboro@gmail.com. I can always find time to email and love making new friends.

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      2. Thank you so much! I completely understand the venting – vent away! I’m not a super vain person but it really bugs me to see the results of pain on my face – many wrinkles that just shouldn’t be there! I hope the weather improves for you and eases the pain asap. I’d love to have a new email friend if that works better for you. My email is amandacallinwriter @gmail.com. I really hope you have a pain-free day! 💕

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      3. Thanks Amanda. I’ll be emailing you shortly, but first I have to get up and move around before I freeze in this position. My weather has improved to a degree, but this is Kentucky! The weather changes faster than most people change their socks! My email is anginoboro@gmail.com If I forget to write please send me a note to remind me that I need that brain transplant as soon as I can find one with a triple digit IQ that begins with a 3. Why not? Maybe a head transplant would work out also, as long as there is a gorgeous head available with no wrinkles at all except for the laugh kind. I’m kinda hating what the pain does to my vocabulary — at least most of the time. Once in a while it’s fun to say a few of the words that have my mom flipping over in her grave — especially like when my brother who is a priest called me last night and I didn’t realize the phone was actually turned on. I don’t remember what word I said while trying to get it into the — okay this is what I really hate — can’t think of the word I want! I think I should go now and say a word or two in private, LOL. 😇

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  9. I know a few women who have MS, but I have never heard it spoken of in this way, so I am grateful for the opportunity to learn more in-depth about this dreaded illness. I wish you a healing that lasts and allows you to be fully your creative self. Thank you very kindly.

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  10. I had never heard of the “MS hug” before. It is not something I would wish on anyone. All I can do in my helplessness (where you are concerned) is to hope that you get rid of it soon and never have another one. All good thoughts coming your way.

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  13. I hope all is well Support a shared story from a woman that lives with MS & shared a brief story of her life… Come check out this great, Real Life Post about an inspirational woman who fought her way through struggle, against health issues, marital troubles all with continued faith. Her story is shared here in this link below. Please if you have any understanding of what she has been through or have experienced anything similar comment below the blog post and show her the love!!! Let her story inspire your faith and confidence that you to can survive and reach greater height regardless of what holds you back. #strongwoman #strength #ms #survival #faith #struggle !#divorce #family #love #happiness #life Feel free to share to your friends as this story is meant to inspire other’s through their hard times😁💖!!!

    https://crazybeautifulvibes.blog/2019/07/31/rocky-path-survived-with-faith/

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