Category Archives: fibromyalgia

Another Fucking Growth Opportunity, Chronic pain, fibromyalgia, Poetry, Spoonie, Spoons

A year fit into me…

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When I was having my first massage in a long while with Abby I has a transformative experience. It was one of those moments when you aren’t sleeping but you aren’t fully engaged with world and you can reach into your mind and really identify the things you NEED to do with your life.

I discovered what 2021 has to be about for me.

I recently has the discussion with my neurologist that he doesn’t know that there is anything more he can do to help me. I have failed all the drugs currently known to treat fibromyalgia.

So in this coming year I need to learn how to live in a body that is years ahead of help from medical science.

So here is my plan:

  • Find the things I can do to help myself. These include:
    • Exercise on the BoxVR every single day regardless of how much it hurts. Even if it’s only for five minutes. All the research says movement helps fibro.
    • Meditate.
    • Stretch every day.
    • Get a massage a week.
    • Lose weight to reduce stress on already stressed joints.
    • Be kind to myself.
    • Blog about your experience regularly.

I also decided to leave the gallery and work on a book of poetry. I want to write about my experience in a way that makes it accessible to those who don’t understand invisible chronic illnesses.

Finally, I need to take the time I need to love my body. I need to find a way to appreciate what it does for me instead of focusing what it does to me.

So it’s a grandiose plan, but I am hopeful it will help.

At this point, I am my only hope.

#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.

chronic, Chronic pain, chronicillness, chronicpain, fibromyalgia, health, Migraine, self-care, Spoonie, Spoons, Spoons

Self Care = Work

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It sounds so relaxing doesn’t it? I’m going to practice self care. It sounds like bubble baths with a good book and relaxation days at a spa.

It doesn’t sound like forcing yourself to eat when you are nauseated or to exercise when every nerve in your body is already screaming or getting enough sleep with insomnia or taking a shower when touching your skin hurts you.

It doesn’t sound like applying for SSDI or acknowledging your disability or cancelling plans because you are over taxed. It doesn’t sound like doing laundry or making your bed.

That is what self-care is. It is doing the hard thing for yourself because you know it will make the rest of your day a teensy bit better.

Really it’s self-work. It’s adulting. It’s setting boundaries and learning to say no. It’s making your space pleasant for you so when you are forced to spend a lot of time in it you aren’t looking around thinking about all the tasks you should be doing. It’s making doctors appointments when you need them and avoiding triggering foods.

And sometimes it’s getting a massage when your skin can’t handle being touched because the underlying muscles need it and if you are lucky you might have relief in a few days after you deal with the bio-feedback from the massage.

And it’s missing the days when a massage was just a massage instead of a medical treatment.

And it’s acknowledging it here on your blog and then letting it go.

Much love to my spoonietribe. Keep on keeping on.