My fibro isn’t Lady Gaga’s fibro

Lady Gaga has fibromyalgia. I’m sorry for her. Having fibro sucks.

And apparently people are now talking about fibromyalgia. This is GREAT. A lot of people, doctors included, don’t think fibro is a real thing. They think it’s all in the mind or some bullshit like that. It’s not. Functional MRIs can now show us that fibromyalgia is a real thing. In case you don’t believe┬áLady Gaga, here are 15 other celebrities who have it.

What concerns me about Lady Gaga sharing her experience is that people are going to hold her up as the model for fibromyalgia, and compare the rest of us to her.

It’s not fair to say, “Well, Lady Gaga swings from a trapeze while singing during her shows and she does shows all the time. Why can’t you come to a party?”

That’s not how chronic illness works.

First of all, fibromyalgia is characterized by three main things: widespread musculoskeletal pain, fatigue, and localized tenderness. How strong each of these is and how often they affect someone depends on the individual. There are an estimated 5 million people with fibromyalgia, so you’re basically looking at 5 million different cases with different symptoms.

Second, a lot of people with fibromyalgia have other chronic health issues. That’s right. As if having fibromyalgia wasn’t crappy enough, we get hit with more. Take me, for example. I have lupus, Hashimoto’s thyroiditis (which may be an expression of the lupus), anxiety, depression, Type 2 diabetes, IBS, and chronic back/leg pain (after a spinal fusion that went kind of wrong). All of these affect my “activities of daily living.” So even if fibro isn’t kicking my ass on a given day, something else probably is.

Third, medical things aside, we’re all VERY different people. We have different expectations for ourselves, different lifestyles, and different life situations. Lady Gaga and Morgan Freeman and whichever other celebrity has fibro are all in a completely different place financially than I am. They may have help to do things that I don’t have – someone to clean their house, someone to do their hair, someone to drive them places. Us normal fibro sufferers have to weigh the costs of our actions against our plans for the day and week. If I know that I have to do laundry, wash dishes, and vacuum, I know that I’m not doing much else that day. Those individually cause pain. Together they’re a nightmare.

So yay, fibromyalgia is getting some attention. I just hope that people do research on it and don’t just assume that it’s the same for all of us. Because it’s not.

Layer by Layer

I’ve been working really hard this summer to try to learn as much as I can about my chronic health issues. As I’ve peeled back different things, I’ve learned more. One thing I believe I’ve learned is that I have ADHD.

Yes, I know, I can’t diagnose myself. No, I haven’t been diagnosed by a doctor yet. No, I wasn’t diagnosed as a kid.

It started with a Facebook post.

What struck me was “I literally cannot recall the words that just came out of my mouth.” That happens to me with alarming frequency. It also applies to text messages and instant messages on FB/Google. I’ll type things and have no idea immediately after that I wrote them.

However, it had never occurred to me that this was something that happened to other people. I always thought it was weird, but that was it. So I posted it and asked if it was really an ADHD thing. I was told it is.

Which led me to do some research on ADHD. It was then that I learned that I have a LOT of the traits: Inability to finish projects I start; delayed start on any project that involves a lot of thinking; impulsivity (mine is spending and eating); finishing people’s sentences when I can’t wait for them to do it. There were others, but these were the highlights.

I thought back to when I was a kid as well. I was never diagnosed, perhaps because I was always a good student. I LOVED school (until I hit high school). But, I was always a chatterbox. If a teacher didn’t re-direct my behavior I talked to other kids who were still working. In high school a Spanish teacher offered to just give me a B if I didn’t talk to anyone else in class. When something didn’t interest me, I didn’t deal with it. I stopped being a great student in high school because I was bored with school. High school was also when I developed a dislike for authority figures and was defiant.

I’m tired of being the person who doesn’t finish projects. I’m tired of being the person who can’t compete in direct sales because of my inability to make plans long-term for myself or follow through on them. I hate that I’m not controlling my spending and how it affects things I want to do.

I am REALLY tired of being distracted all the time. Of forgetting what I set out to do when I stand up. Of getting up to get water, and finding 30 things to do on the way. I want to be able to focus on things. I want to remember important things I need to do.

I won’t see my shrink again until September, but that doesn’t mean I can’t work on things in the meantime. I’ve borrowed books from the library on ADHD that include coping behaviors so that I can start NOW to do what I can to make things better for me. I have a planner that’s broken down into hourly segments so I can put myself on a schedule so I get things done. I’m using an app called Habitica to track my To-Do list so things don’t get forgotten (like paying bar dues). I’m going to start posting my goals where I can see them so I remember to do them. I’m very “out of sight, out of mind” and that’s a detriment.

I want better for my life. It’s going to take a lot of work on my end to come up with workarounds. But I’m tired of feeling like a failure, so whatever work it takes is worth it. I’d appreciate any positive thoughts you can spare and wishes of good luck!

Unexplained Illness

I took a trip to the ER Sunday night. I spent 6 hours there and learned that I do not have appendicitis. Yes, that’s good news, but maybe we could tell me what IS wrong with me?

It started Saturday night with a dream. In the dream, a woman came up to me, squeezed my right side and said something like, “Oh got some pain there?” Until she squeezed me, I had no idea there was a problem. Then, later in the dream, another woman came up to me, squeezed my side and said, “It’s serious. You should get it checked out.”

When I woke up on SundayI remembered the dream, but didn’t think it made any sense since my side wasn’t bothering me. I poked myself, sure that the women were just crazy. Nope, turns out I was the crazy one. Palpating my side definitely produced some pain. I diligently examined myself to discover that was true all the way around to my belly button. I had crap to do on Sunday, so I let it go.

As the day progressed the pain got worse. I didn’t have to push as hard to elicit pain. By the end of the day, it just hurt without me having to do anything. Around 11pm, Mr. Lyndsy asked if I wanted to go get it checked out. We tried to find a clinic that was still open, but since none were, we headed to the ER.

The doctor managed to elicit a lot of pain when he pressed down and since that wasn’t enough to tell him anything, he ordered blood work. It came back normal, but that wouldn’t necessarily rule out appendicitis, so he also ordered a CT scan. Also clean. Since I clearly wasn’t in any immediate danger, they discharged me with Zantac and Tylenol.

I haven’t yet taken the Zantac because I’m a terrible patient. I do still have the pain as well. Dr. Google has failed to yield any useful answers.

Perhaps I’ll have another dream and the pokey, prodding women can tell me what’s actually wrong. Not sure how I’ll explain that to a medical professional, but that’s okay. I’m sure they’ve heard stranger stories.