Category Archives: #spoonie

My kinky side…

I’ve lost ten pounds in the last nine days because I can’t eat more than a few hundred calories. Every day I can eat less than the day before because every day my stomach shrinks and my sense of feeling fuller happens after less food and my sense of “OMG I’m going to pull a Exorcist at the table” happens after fewer and fewer bites.

Today it was half an avocado for breakfast. I didn’t even make it all the way through before I felt ill.
For lunch I drank a protein shake and felt pretty good about finishing it before I realized it only had 190 calories and not the 390 I thought it did.
Then I managed a whole 5 Hershey’s kisses.
Just now I ate 1/2 of dinner consisting of cream of broccoli soup mixed with ground beef, steamed veggies, and nutritional yeast.

I feel as though I have eaten Thanksgiving dinner. I’m trying not to hurl.

Only four and a half more weeks until surgery to fix the “kink in my hose” as the surgeon described the portion of my small intestine wrapped around scar tissue in my abdomen. Until then it’s my own personal version of Biggest Loser, Starvation Edition.

To add a fun element to the party I am tapering up on Topomax which kills the hunger signal, makes me feel full(er), AND makes every taste as though my mouth is coated in blood or pennies. (As an aside, I would not make a good vampire. Their diet is disgusting. There will be no Un-Deading it for THIS girl.)

So I am also popping pills every night that make eating even more difficult and less fun. Further, the pills make me feel as though I have the flu so I have spent the past week feeling all over body aches and bone and joint pain well beyond the normal Fibro party.

Kids, Don’t do Drugs. They seriously mess with you.

Well my husband just arrived with a nice bottle of wine from the 19 Crimes collection. I will probably have a sip or two before I am tempted to spit it out as it will taste revolting BUT damnit I will have some!!!

Stay safe loves.

UPDATE: The wine tasted like soap. SOAP! Everything else tastes like copper but the wine tastes soapy? I couldn’t even manage to sip enough to get the slightest bit loopy, even on so few calories. I feel cheated.

Homework sucks…

I have homework to do. I have to read up on this scary disease and I don’t want to. I want to play with my dog or read a great work of fiction or watch Jane The Virgin.

I don’t want to record my symptoms in my pain journal and read about parathesia and nerve sensitivity.

Sometimes I hate being a grown up. There isn’t anyone here to make me stay in my room until my homework is done so I have to motivate myself to do it even though all I want to do is something else.

I guess we’ll see if the whiny teenager inside of me wins and I play StarDew Valley all day or if the grown ass woman wins and I do what I am supposed to do.

Who are you voting for?

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.