Been a while, no? Sorry.

This is subtitled: “Let’s get real about fibro!” because I’m fucking cheesy like that.

So I don’t want to know how long it’s been since I’ve posted. Too long. Fibro doesn’t change all that much for me, and I feel like if I don’t have anything productive to add to the mix, why bother?

That’s a bunch of fucking bullshit, y’all, I’ve just been too lazy to post.

Anyway, since I have a bunch of new friends on facebook, I figured I’d just do a good recap post here so I can share it there.

I’ve had fibro for as long as I can remember. Most people tend to notice their symptoms later in life, but I have very early memories of fibro pain.

The earliest specific one I remember was actually one of the worst ever that I can remember. I woke up in the middle of the night and both legs and both arms were asleep. I genuinely don’t have a way to accurately describe it to someone who’s never experienced it with fibro or another nerve disorder. Probably the closest I can compare it is when your extremities get so cold that they go numb and they hurt when the feeling starts to come back. Imagine that magnified by a million.

The typical fibro flare is closer to the pain you get in your joints when you have a really high fever. I get that feeling fairly regularly. I’ve learned to tune out a lot of it, but that’s pretty much my baseline. Does that sound like fun? It really isn’t. It’s a pain in the ass.

That’s just the tip of the iceberg, too! My particular flavour of fibro means that I am particularly cold sensitive. Any time of sudden drop in temperature in the weather will start a flare, and cold air and surfaces are painful to my skin and joints. I have gotten used to it over the years, but I have to be careful because I can overdo it without realizing it until I’m sick the next day.

So let’s talk about another aspect about my fibro. It means I have had insomnia my entire life. Another early memory for me is being about five years old. I couldn’t sleep, so I was under my sheets with a flashlight to read. That was pretty much every night of my life. I would read, I would play dress-up with myself and my stuffed animals, I would sometimes (but not often) write. When I was old enough Mom would let me stay up as long as she couldn’t hear me. That helped a little, just not having to pretend anymore. Right now to combat the insomnia I have to take a ton of meds, I have to be careful with caffeine and naps, and I have to keep myself very scheduled. Traveling is a GIGANTIC pain in the ass because of the need to schedule.

Another fun thing is that I have to really take care of my allergies. I’ve now grown to be allergic to most things in existence, so I have to take a lot of allergy medicine and be aware of how I’m going to react to pollen, dirt, dust, animal hairs, etc.. A really bad allergy attack is another thing that brings on a flare. Not fun.

My body seems to be very mentally-driven. If I get really stressed out I will flare and at times eventually just shut down. That either means that I simply can’t stay awake, I throw up, or I get flu-like symptoms. I’ve had combinations of them, too. That one happens frequently when I travel, too, which is AWESOME added onto the problems with needing to keep my sleep schedule steady. The total shut-down will also occur if I push myself too hard physically. Let’s get more into the physical stuff!

My fibro has aspects of it that are as predictable as it does ones that are random. It took me almost 20 years of trial and error to figure out exercises I could to without wanting to die. Any exercise I do has to be limited in repetitions. I can’t do much weight lifting, and I can’t do pushups. In the amount of time it takes for either to make a difference athletically is enough time for it to hurt too much to be worth it. Both of those suck a lot. I thought for a long time that I couldn’t run, but I discovered a year or two ago that I can run if I wrap myself up like a fucking accident-prone mummy first. I have to get REALLY light-weight shoes that are both really shock-absorbent and not overly expensive (because I somehow wear out shoes insanely fast). I have to wear elastic ankle braces that I have to replace now and then (They eventually stretch out.), and I’ve spent more money than I care to admit on knee braces. The biggest issue with knee braces is how long it takes to get in and out of the really good ones. I have a pair that are quick to get in and out of but they look stupid under anything and if I put them OVER anything they slide down my legs (not overly useful). #1stWorldRunnerProblems I can’t run outdoors if it’s colder than 40 degrees outside for more than a few days, and I don’t belong to a gym right now, so that sucks.

The random pain things are harder to deal with because they’re both random in where they occur and when they occur. Tonight my chest hurts like I was either coughing all day yesterday or tried to bench press too much weight. My thighs hurt like I ran up a hill. I did none of those things. While certain pains are predictable (My hands and feet always hurt all winter.), so many of them just aren’t. My back is also really stiff today, but I have actual back problems on TOP of the fibro.

I’ll only burden you with one more negative about fibro. Whether it’s from the insomnia or just on its own, fibro ALWAYS makes me tired. Being in bed for more than eight hours (I don’t always get that long first.) hurts, so lots of times I just have to ignore being tired. When I get too tired I get forgetful. It’s obnoxious. It’s hard not to beat up on yourself at times.

Now that I’ve complained, let me be positive for a minute. There is one thing I try really hard to never do and that’s feel sorry for myself over my fibro. Don’t get me wrong, fibro fucking sucks. I wouldn’t wish it on anyone. But things could be so much worse. I have extremities to hurt. I’m alive to notice aches and pains. I’ve learned over the years how to both work with the pain and do what I can to avoid it.

Someone out there somewhere always has it worse than you do. It just takes some perspective to remember that sometimes.