What hurts more than even the worst of the physical pain? When people who should understand *because they have chronic pain too* say to you: “You’d feel better if you just got out of the house” (into 100-degree weather, when everything that holds you upright hurts) or “maybe it wouldn’t be so bad…
My mother has sciatica, and thinks she knows how I feel. I tell her my pelvis and legs feel like a foot that has fallen asleep, and you’re now trying to walk on that tingly pain.
She thinks I’m exaggerating.
When I was younger I’m not sure I ever even used the word “fatigue”. If I was tired, I was tired and that was that. Body tired? I’m tired. Head tired? I’m tired. No need to bring fancy words into it, and by fancy I apparently mean “more than one syllable”.
Unsurprisingly (lots of syllables…
Why is it that when I say I don’t feel like doing something I am nagged to the point of feeling useless. I don’t have the energy, I don’t have the strength, I don’t have the concentration or focus, I’m just not able. I have fibromyalgia; what can I do to make someone understand?
This confession was submitted anonymously
The Fibromyalgia Complication Tree
Don’t let it overwhelm you, Use it as a guide
They need to add gluten to this tree. I ate a huge portion of crepes a few days ago and am still suffering the consequences.
The only crummy thing about working with kids is the germs. Now I understand that “cooties” aren’t some make-believe thing invented by children to weird each other out. Cooties are real. And kids are crawling with them.
“Before” I would get sick for a few days, often work the entire time, and bounce back rather quickly. “Now” a mere cold puts me down for a week. As if having fibro doesn’t make life difficult enough; having fibro and catching a cold from a cootie bearing kid makes life near impossible. I was sick for 7 days; working through 3 of those days was the worst thing I could have done. I’m no longer sick from the cooties, yet the fibro still has me on my ass. I have the headache so bad even my eyes hurt, on top of that my eyes are overly sensitive to light, sound drives me mad, my guts are killing me and eating is difficult, the fatigue has me sleeping for 12 hours at a time and awakening unrefreshed. I seriously just want to stay in bed 24hrs at a time and not even acknowledge lamplight, let alone sunlight. But, we all know that this delicate balancing act prohibits us from staying in bed and not moving; as much as we’d like. This delicate balancing act requires us to rest just enough, eat healthy, and excercise just enough. But what is “just enough?” I THOUGHT I had it down, but this cold has changed the rules. What works when I’m “healthy”, doesn’t seem to work so well when I’m recovering from a cold. I’m also quite certain lack of proper nutrition isn’t helping the matter either.
Today is the first day in over a week that I’ve been able to get out of bed and feel somewhat “normal”. Too bad I won’t be able to work this week; I was on a roll! Last week I managed 36 hours without feeling like dying; my 12 hour shifts no longer felt so horrid. Then the cootie kid happened. Gr. Well, maybe next week I can start up on a new roll and learn how to work full-time again. Full-time every week… ahhhhhh what a luxury that has become!
Mind you, last month I only worked part-time for 2 weeks and still manage to add $300 to our savings. Perhaps it’s decision time again: work full-time every week; work full-time every other week; work part-time every week. I’ll have to monitor myself closely the next month or so, keep track of hours worked and how I felt every week. Figure out the delicate balancing act between rest and work. I only “need” to make $400/mth, but it sure would be nice to double that and contribute to a tidy little nest egg. Or start paying our debt to his parents. Considering we’d LOVE LOVE LOVE to buy their house when they sell it in a few years, perhaps it would be wise to start showing we’re capable and start paying off our debt now.
Goals help me with learning the rules… goals beyond simple survival. So let’s set up some goals: 1) generate $400 every month, 2) generate an extra $100/mth to give to his parents, 3) generate another $300/mth for our savings. For a total of $800/mth; less than half of what I made “before”. I want want want these goals! So maybe screw learning the rules, maybe I should find a way to MAKE the rules!
Look out Rules. I’m about to start controlling YOU!
Tomatoes. Are. Evil.
Hands down, for some strange reason, they are probably the worst thing for me to eat with my IBS. Maybe it’s the acidity, maybe it’s the tough-to-digest skin, or even those pesky little seeds. With IBS though, who really knows?
So what do you do when you’re at an Italian family birthday party and tomatoes are left right and centre? You either scrape bruschetta topping off the baguette while your nonna gives you cut eye from the other side of table. Or, as I chose to do in a moment of genealogical weakness, you simply man up and eat them.
Then you man up again and eat the appetizer of tomato slices with bocconcini. Then you man up even more when you have to eat the penne covered in tomato sauce. And just when you think you’re done, you somehow find yourself manning up again when the main veal dish comes out of the kitchen smothered in a tomato-caper sauce.
And when all that eating is finally done, if you’re me, you essentially have a 48-hour IBS attack and have to call in sick to work on Monday.
I don’t know what it is about family gatherings, but every time I’m at one I feel absolutely horrible refusing food that I know is going to hurt my stomach. It comes down to my sense of pride, really. When someone you love offers you a meal, it’s hard to politely say ‘no thanks’ and then sleep soundly at night. Even though you might not be offending anybody in the long run, it certainly feels like it while you’re in the moment, seated around the dinner table.
This tomato-induced nightmare attack was one of the worst I’ve had so far in 2011. It’s common occurrence this time of year, however, when tomatoes pulled off the vine are heavy, lush and blushed. When their ruby flesh tastes like the most perfect warm summer day on a fork. When pureed and simmered over a gentle flame they make the most sensual, delicate sauce that elevates plain, boxed pasta to something transcendental.
The verdict? Tomatoes are still truly evil. But when in season and served among family and friends, all that pain is usually worth it.
My entire family knows I can’t have gluten. So now when I show up for a meal and everything is glutenized, I don’t eat a thing. Hurt their feelings? If they are so unconcerned about me that they couldn’t care less if the food is glutenized… actually, if they care so little why do I even bother going?