Category Archives: #spoonie

The ponderous pack…

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.


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.

Life without Margin…

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.