Category Archives: #spoons

#fibro, #fibromyalgia, #fibrowarrior, #spoonie, #spoonielife, #spoons, #topomax, #topomaxsucks, #writer, Chronic pain, fibromyalgia, health, Spoonie, Spoonie Tips N' Tricks, Spoons

Too hungry to sleep…

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yet too full to eat. Last night was a special kind of party. I lay awake with a rumbling belly, thinking about all the food I have enjoyed eating over the years in great detail, while I tried desperately to keep down the 1/2 cup of meat and veggies I managed to eat at dinner.

It was an experience I am not looking forward to repeating. In fact, right now I’m writing here instead of sipping at the disgusting copper-flavored vanilla protein shake I am too full to drink despite having eating nothing since 7 pm last night.

On the upside I have now lost 11 pounds since this all started. Only a month left to go. I have the excess weight to lose and if I can use this miserable experience as a jumping off point for exercise then I can actually start running again and maybe keep it off.

My amazing neuro told me that Fibromyalgia is a syndrome that attacks and destroys the small nerve fibers in the body, hence the pain, itching, tingling, etc. However, the good news is that exercise and motion of any kind creates new small nerve fibers, so movement literally floods our bodies with new soldiers for the fight, which is why it’s important to keep moving. I was doing a really good job with Couch to 5K but the combination of gaining muscle weight and then Lyrica weight made the running too hard on my knees so I had to stop, but I miss it. I would like to do it again and I know my puppy would like to join me. So, maybe this month will be a good place to jump start running.

See, silver lining. Not all bad. Gonna take a disgusting sip of chalky copper vanilla shake now.

Yuck.

I would just slam it to avoid the flavor but I did that yesterday and spent an hour trying not to throw it up. So, the good news about rebuilding those nerve fibers is that it’s not exercise per se that does it, it’s movement. One of the ways I make sure I move some every day, even on the worst days, is I make my arms and feet dance every time there is music played during a movie or TV show.

I also routinely perform wrist rolls, ankle rolls, and neck stretches as I rest. While there are a ton of exercises and programs out there, Yoga, VR boxing, dancing, etc., my doc was clear, movement is the key to helping out our bodies so that is what I focus on. Sometimes my only movement in a day is doing my laundry or vacuuming my floor because that’s all I can do, and that’s ok.

Stay safe loves, I’m going to try and finish this shake and maybe, just maybe, get all the stuffy fluff my puppy has strewn about the room into a trash can so I can pretend, for a hot second, that I live in a clean house.

#fibromyalgia, #spoonie, #spoons, #tired, fibromyalgia, Just me, Just me, Spoons

Shortchanging…

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It seems apropos to write about short changing during a coin crisis. Of course, I am writing about a lack of emotional quarters instead of a lack of actual quarters but still, they say timing is everything.

I want to apologize to you for shortchanging you.

I short change you every time you ask how I am feeling. I never share the whole answer with you. I never let you inside that aspect of my life.

This failing of mine comes from a place of love.

You see, I can feel how much I hurt you when you learn how much I hurt. You love me and you don’t want to see me in pain. But you try to support me, you ask how I am and hope with intensity that my answer is “better.”

It rarely is.

That’s the thing about Fibromyalgia. It’s a tenacious little fucker.

I have a problem though. You see, I’ve been shortchanging you for so long that I no longer feel comfortable giving you the full story. I’ve managed to shut myself off from that luxury through my effort to protect you.

And I really, really need you right now.

I am tired.

It’s been a long road of not being okay and there are no exits for me. I am supposed to wake up every day and fight an enemy I cannot see, who is so close to me you cannot separate me from it.

I am so very tired.

I am too tired for words. Too tired to tell you how much I hurt. All of my energy is going into this fight right now. I am less able to friend, to mom, to wife.

I apologize for that.

I would ask that when you ask me how I am and I don’t really tell you, to please assume I am in a bad place and just pour on the love. I’m sorry I can’t ask in a better way, or be more verbose one on one.

I love you.

#chronicpain, #fibromyalgia, #headache, #migraine, #spoonie, #spoons, Another Fucking Growth Opportunity, Chronic pain, fibromyalgia, health, Spoonie, Spoons, Trigeminal Neuralgia

Life without Margin…

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It was supposed to be a day of rest. Having come off of two days of high energy and low pain levels I knew another flare was coming. I planned to do a load of laundry, sit in the car while my newly permitted teen drove, and make a good dinner. The rest of the day was to be spent expending as little energy as possible and dealing with the aches and pains of activity.

I had my coffee, I took out the dog. The pain level wasn’t too terribly bad, about a 6. All over body aches, joint pain, headache. Your basic flu feeling.

I came upstairs to luxuriate in my bed, watch a show – my hands hurt too much to hold a book up for reading – and snuggle my dog. I came up stairs slowly, muscles aching with each step. I came to the door and low and behold there was my cat, peeing on my bed.

Suddenly my day of rest became stripping the bed linens off to see if her commentary had soaked through to the mattress protector underneath. It had. Then it was gathering up the whole kit and kaboodle, getting it into baskets, getting out a fresh protector, fresh linens, new blankets. Of course everything was on different floors of the three story house because laundry is in the basement and I live on the highest floor.

Up down, up down… can’t keep going. Get the sheets on… get the blanket on… kiddo, please help me with the pillows.
I’ll pay you to do the rest.

And I’m done.

Living with chronic pain is like living paycheck to paycheck. You may do just fine so long as everything happens as expected, so long as you can forgo some things and appropriately prioritize others.

However, as soon as the unexpected strikes you are borrowing on credit and you will have to pay for the expenses another day, or several other days. As for interest, you can push yourself into another flare up and lose days, weeks, sometimes more to lowered energy levels, high pain, medication side effects, etc.

It’s life without a margin, without a safety net and believe me, it sucks.