So, I have this thing (condition, disorder, Biblical plague, vampire
curse). It started after I got mono about 10 1/2 years ago. Basically, I
get these flare-ups of symptoms anywhere from 1-3 times a month during
which I'm really weak, prone to fainting, get low fevers and swollen
glands, sore throat, pain all over my body but mostly in my hands and
feet and I lose control of my hands. In my early twenties I saw a lot of
doctors. One said it was an auto-immune disorder based on some
bloodwork. Another said the first doctor was nuts and the bloodwork
unimportant and it was fibromyalgia. Still a third suggested I was
hysterical and needed to just chill out and let my then-fiance do all
the hard-thinkin'-work (only saw that jackass once). At that time it
seemed slightly romantic to me to lay abed and take medications that did
nothing other than make me fat and keep me from being able to drink,
but now that I have kids and responsibilities (and thus a definite need
for the occasional glass or two of wine), it's just inconvenient and
embarrassing. So, I just pretend it doesn't exist.
Fibromyalgia? What fibromyalgia? |
Dylan: What on earth are you doing?!
Me: Oh, I'm fine. Just taking a break.
Dylan: On the floor? Why?
Me: Oh, you know when you're reaching up to the top shelf of the cupboard and you start to feel like you're going to faint? That happened, so I just need to lay down for a little bit. I'll be fine.
Dylan: What are you talking about? That's not a thing. People don't do that.
Me: Yes they do! One of my friends from the mommy board, Susie...Mc...Suserson says it happens to her all the time and it's totally normal. She runs marathons and runs her own cloth diaper business and she's a rheumatologist besides, so she should know (the nice thing about having a lot of Internet friends is that I can totally make up people and give them fake attributes that support my side of any argument and Dylan can never verify their identity).
Dylan: Go lay on the couch! You are not okay.
Me: ...
Dylan: Go on!
Me: Give me a minute...I can't get off the floor...
Dylan: Sigh...
I've totally got this. |
Vigorous exercise also pushes the limits of my denial, but, of course, I am determined to do it. That half-marathon ain't gonna run itself, am I right? This particular flare started yesterday morning. I woke up with that tell-tale heaviness in my limbs and that soul-crushing fatigue that hearkens back to the colicky newborn days. "Nah," I told myself as I struggled to close my hands around the waistband of my running shorts to pull them up, "I'm just tired. I didn't eat well enough yesterday. I'm probably dehydrated. I'll just have a glass of water and a spoonful of peanut butter and I'll be fine."
I started out at a slow jog and my limbs felt a bit shaky, but I told myself they'd warm up. It was then that I remembered a story told to me by a real Internet friend and fellow mother runner who is similarly afflicted with mystery weakness/pain/fainting/fibromyalgia/you better not tell me this is in my head or I'll punch you in the face...as soon as I can get up off the floor. She was out running with her double jogger (have I mentioned she's also a badass?) and she felt pretty crappy that day, but the runner's high beckons like a siren's song and so she went anyway. Well, at some point along her run it became clear that she couldn't push through it anymore...when she fainted...on the sidewalk...alongside her startled children...and had to be rescued by a good Samaritan who was passing by.
The depths of my denial being as immense as my hubris, I thought, "Oh, that won't happen to me. I'm just going on a short run and besides I don't have the jogging stroller."
Then a few steps later, "Man, these shoes are so crappy. They can't even hold my feet in place anymore. I really need to get new running shoes. I bet if I go get new running shoes this weekend, it'll be fine."
And a few steps after that, "This road is so uneven! Someone needs to come re-pave it. Obviously my legs wouldn't be buckling if the road were smoother."
And yet a few steps after that, "Okay...there is a decent chance I'm going to fall on my face running down this hill..."
Eventually, I admitted (temporary) defeat and dragged my sorry butt back to our yard where Dylan was waiting outside with Ry for the school bus. He took one look at me and sighed and then helped me up the porch steps.
So...yeah...that's where I am today. I can't maintain my grip on the steering wheel so I can't drive the children anywhere and I have to make good friends with the dust bunnies under the couch every few minutes. But you know what? I'm going to do some yoga this afternoon and then we're going to hang out with some friends who are kind enough to come to us and I will adjust my expectations for the next couple of days. Because this thing is real, despite my best Cleopatra act, and it's going to push me down every once in awhile, but it will never, ever defeat me.
Ugh. I hate this for you :( But I'm really glad you got home ok!!
ReplyDeleteyou continue to amaze me, megan.. yes, you are truly an amazing person <3
ReplyDeletei've started developing something similar in the past couple years, but i haven't seen the doctor for it yet. it hasn't gotten so severe that i have to lay down immediately, wherever i am (like on the floor), during moments of wobbliness, but i do generally have to have a seat somewhere and stay there for 20 minutes or so to let it pass. i've been indoctrinating myself with the same denial...it's just a normal growing older stuff, right? kinda sad to hear more evidence that it probably isn't. :(
ReplyDeletesomething i'd heard about fibro from a friend is that it gets a lot worse if you don't force yourself to keep moving. not talking about 20min breaks here and there, i mean like laying around all day for a week straight, so i try hard to keep going no matter how awful i feel. most of the time i don't have much choice with a toddler (although it gets difficult putting tad in his crib and lifting him to the changing table on bad days)...i can't imagine how you do it with your two.
hang in there.
Possibly facing the same fate (as it also tends to be hereditary and my mom has fibro) it's nice to know it doesn't have to be as limiting as it is for some people. I'm sort of in the same place of denial though, I keep telling myself I'm far too young to hurt as much as I do, and am also putting off doctors.
ReplyDeleteHope this flare passes quickly for you and you're back to your normal activities soon!
Carly, I can definitely attest to the fact that my flares were way more severe and lasted longer when I was an inactive 20ish slug. Moderate-vigorous exercise when I'm not flaring and light exercise (yoga and slow walking mostly) when I am helps a lot. Sorry you're experiencing the same crap! It is no fun, but we soldier on, right :)?
ReplyDeleteyeah we sure do. don't have much choice, do we? ;)
DeleteYou handle it so, so well, which is obviously a blessing and a curse. I think you need a spa vacation or something- between the doctor fights, house projects and the flare ups you deserve it.
ReplyDeleteI'm flattered that you referred to me as a badass, but I think the proper word would be dumbass in the aforementioned running incident. Ah, mystery disease, I shake my fist at you along with Megan!
ReplyDelete