Tag Archives: #fibromyalgia

Chronic Pain, Chronic pain, fibromyalgia

A slow but inevitable enemy…

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Having a progressive disease that destroys you in small bites is rather like being chased by Death if Death was a very small, somewhat deliberate snail.

You aren’t running from a great and final clash between yourself and your enemy but upon occasion, throughout your life, you will find it has caught up and stolen something from you.

A bit of feeling in your fingertips.

Your body’s ability to regulate temperature effectively.

That super sensitive spot above your left ear.

Each time you notice an attack you redouble your efforts to strengthen, fight back, but the damage has been done and the slow tiny inevitable snail of Death matches ever onwards after you.

Yesterday I had my first arm failure. I was carrying a box down the stairs when suddenly my arms just stopped working. The box finished its trip downstairs on it’s own and I stood mis-stairs looking at my suddenly useless arms wondering what the fuck happened.

There was no strain beforehand, no warning of imminent failure, just a tiny snail snipping a connection in my body.

Then I could move them again. I went to the landing, tried picking the box up again, and moved it to its final location.

So who knows how often this will happen going forward. I’ve been dropping things with my hands for years, they suffered the faulty wiring of this disease earliest, but the arms have heretofore been reliable.

Now, not so much.

Chronic pain

A choice to keep going anyway.

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That’s where I ended up.

After 15 years of tests, medication failures,  painful treatments, expensive doctors.

I ended up with a diagnosis science poorly understands and a palliative care team.

And a choice to keep going anyway.

I am in pain every day. All day every day. Sometimes the pain is only as distracting as a well behaved toddler while you’re at the grocery store. It demands my attention constantly but doesn’t melt down. If I apply mindfulness techniques I can accept it’s presence and live with it along side me.

While I paint, clean, have coffee, exercise, socialize, drive, care for others, whatever I do.

Some days it’s a teenager who is out hours past curfew. Keeping me from sleep as I toss and turn waiting for the magical moment I can actually safely drop off.

It is never gone and there is no cure for it.

My life got livable again when I stopped looking for one and accepted my pain as part of my existence. When I relearned my body’s limitations and stopped trying to recover my old me.

When I made the choice to keep going anyway.

#chronicpain, #fibro, #fibromyalgia, #fibrowarrior, #illness, #spoonie, #therapy, Just me

The ponderous pack…

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I recently started therapy again. It’s the first time since I became disabled and to be fair I should have started years ago. I’m not against therapy and I’m no hero but I got so tired of doctors appointments that the thought of another doctor in my life became repugnant. However, I should have done it anyway because in our first session he asked me how I am and 45 minutes later I was done word vomiting up a convoluted mess of losing my career and disappointing my family and Covid and the death of my cat and many, many more of the things I have been carrying with me throughout the past seven years.

In our second session we came to the biggest thing. I’ve always been precocious.

We were discussing my utter bone-deep exhaustion and he asked me if I ever felt like a champion for fighting this disease every day. The question shocked me into silence because no, I don’t. I never have.

I had to think hard about why I don’t feel like a champion. Why I don’t feel the same way about fighting my disease as I do about friends fighting off cancer, for example. The answer finally came to me.

I don’t feel like a champion because champions win. There is a fight, maybe even a long one, but there is an end to their battle. They emerge triumphant and get to move on with their lives.

I don’t feel like a champion because my fight is never going to end. Not until I die. I am going to be waking up every morning and greeting this disease for the rest of my not medically shortened existence.

Fibromyalgia doesn’t kill you. Not the way Lupus or MS does. It’s not degenerative, which means I could live to be 105 if all else remains equal. I could live decades and decades more with this fucker riding me.

How can I feel like a champion when I can’t ever win the fight?

Now I know getting through each day should feel like a win but seriously I feel like an immortal foot soldier drafted into some eternal war started by some psychotic despot. I know I’m going to wake up every day and fight off horrible things but I also know I’m never not going to wake up and fight off horrible things.

That’s a heavy feeling. It kind of sucks the cheerfulness out of the room when you mention it, even to a therapist.

He told me it’s a heavy thing to carry. I have to agree it is. Identifying it made it a little lighter, in the way tightening the hip straps on your camping backpack makes it easier to carry. The weight isn’t gone but it’s been distributed a little more evenly.

Even so I’m struggling to lift it. It’s been 2137 days since my headache began. It’s been nearly six years since I have lived a day without hurting. I’m tired.

So, I’m learning about my disease, because despite having Fibro I have always been focused on my headaches and it’s seemed like an ancillary issue. Well, until I had my first real flare, which I am currently in, and realized it’s a no-joke asshole of a disease with serious real world consequences that you cannot avoid that should be taken dead seriously.

I’m reading about it and learning all I can so I can try to manage this mess a little better.

And I am working on making my space nicer. I am working on art. I am sucking at communication because I can’t seem to make the words in my mind travel to my mouth in an effective way. I try to say “He needs the stairs” but what comes out is “He needs the stirrer.”

I misspeak a lot.

But I am working on it. I am gearing up for the fight. I am trying the Lyrica and seeing the therapist. I am exercising.

I am still in the ring.