Posts Tagged ‘ailments’

This was posted on the PatientsLikeMe forums, and I’d love to share it with you guys here. The poster wanted to add a note that her fibromyalgia is considered mild compared to many others.

I could have written this; it sounds so much like my own experiences and symptoms. I work from home, and though I don’t commute, I do have many of the same issues when it comes to travel in general and daily business dealings.

I thought I would go through my day and try to help a healthy person understand what it would be like to live with fibromyalgia.

At 5am, the alarm goes off. I wake up feeling like I did heavy yardwork yesterday… and the day before that, too. My brain is slow to come out of sleep, and rebels against waking. I slept 8 hours last night, but I’m as tired as if I slept 5 hours. Without sleep medicines, I feel like I’ve slept 2 or 3 hours, if at all, really, because I kinda had this half-consciousness all night long. Thank goodness for my muscle relaxant because otherwise, the leg cramps would keep me awake for certain.

I roll out of bed. My body is so stiff. I’m 30 years old, but I shuffle. The shower… the shower is the best part of my entire day. The hot water eases that “hit by a truck” feeling, helps me move better. I use lots of water, because it’s my only relief without my pain meds. I get out of the shower and take my pain meds. It will take them about 45minutes to an hour before I’m really feeling them. I’ll take an hour and a half to get ready to get out the door, because my body is fighting me most of the way.

The commute: Thankfully, I’m still working. It’s a miracle. You’ll see why. So, I sit on the trolley and listen to music and try to relax my body. The metal seats and vibration make my back tense up, which means pain on top of pain. Sometimes I just try to meditate a bit. If I overwork myself like that fellow over there on his laptop or that guy thumbing through his briefcase, then I won’t have any energy left for work. Conserve energy and make it through the day.

I get into the office. Somebody is in a hurry, they want an answer now! My brain tries to produce something useful. Something comes out of my mouth. Gosh, I hope that was right. No… not really. I back-track. Oh crap, they’re looking at me like I’m an idiot. Again. Yet, they have no idea how much energy they just took out of my reserves. Wait, I was doing something I had to get done… Shoot, I lost my train of thought and I’m feeling kinda drained. And trying not to be emotional over looking like an idiot… It happens so many times, that look on people’s faces… It’s hard not to start believing it.

I’m doing my best.

My back aches, my wrist is trying to spasm. The mail comes in… time to sort the mail. No, time to drop the mail. Pick it up… sort this here… there… that’s a real job for my hands. They don’t want to work right. To other people, I might look slow. They don’t know my forearms are spasming and I’m fighting against my own body. The task of sorting checks, copying them and turning them over and stamping them — it’s like a marathon for my spasmed arms and hands.

By lunch, I’m relieved. It has gotten to feel like I’ve been walking around with a dufflebag slung around my neck… my neck is so stiff from the “imaginary weight” and my lower back is screaming. I wish the office had a quiet place I could go lay down, but the office is actually still very “public” for me. Only in my own home can I truly relax. Time for a pain pill to get me through the rest of the day. By about 2pm, I’m switching back and forth mindlessly. My attention span is so short. Probably because the demands of the day are catching up to me, despite my meds.

Most of my day is spent sitting at my desk. Getting up to get ready to prepare the conference room for a meeting is something I have to work up to. The thought of carrying reams of paper down the hall to the workroom makes me want to cry. If I have to do it, I pick a time when I expect I’ll be able to let my body recover… the pain keeps my mind from focusing, and I feel the fatigue sweeping over me from that extra exertion. It doesn’t feel like a victory because my body deals out punishment. It’s keeping score.

By quitting time, I want to cry with the relief of having another day under my belt. My back was just screaming, my head had a familiar daily headache — a dull ache that threatens to turn into a roar. I massage my neck a bit to get the tension out on the way home. Vibrating metal seats on the trolley again. Well, at least it’s not the bus where you feel every THUMP as if someone just booted you in the back. I’m too tired to think.

I come home. I pull something out of the freezer and put it in the microwave. I want to cook, really, and I want to do a little housework and maybe exercise… my apartment is shameful. But I have to rest. The computer or TV… something pretty passive. I’d really like to be able to go pick up some groceries. Not tonight. Well, tomorrow I may have cereal for dinner but at least I won’t starve. I’m too tired to even think about the dull aches, the spasms… they’re drowned into the background. My time is now my own and I’m exhausted. At 7:30, I take my sleep medications. I have to be home, because then I’ll need to wind down so that they take effect. Walking around too much or getting into an exciting TV program means they’re not going to work as well. At 8pm, I generally crawl into bed, and I try to convince myself to do something low-key. By 9pm, I should be asleep. If I fall asleep at 10pm, that means my next day is going to be 100 times worse. Every single hour of sleep makes that much of a difference.

I follow this same pattern every weekday. On weekends, I don’t have all that time to myself. I have to rest up, because 40hours is a long, demanding week. I can plan one major trip to get groceries, but that’s at the exclusion of just about everything else I would *LIKE* to do. Most of the time, anyhow. There are rare times when I feel a bit better. There are times I just push my limits and pay dearly later. On Sunday morning, I dearly want to go to church but my body rebels and I roll over in bed. I get up, try to get dressed… and end up in bed again. Sigh, why fight? Monday starts the same drudgery all over again and I need to rest.

If you think this is depressing to listen to… just remember that your body isn’t feeling like you’re being stabbed, your back isn’t giving you unrelenting pain, your 8 hours of rest doesn’t feel like half that, you’re not trying to convince everyone that you’re still an intelligent and worthwhile person and that you can “keep up” — you probably ride a bus without giving it much thought… certainly not wincing every time it hits a bump. A headache probably doesn’t visit you like a dear friend, every single day… sometimes all day long. Your hands listen to what you tell them to do most of the time, and your body doesn’t act like your own worst enemy. That’s fibromyalgia. Every day that I am able to get out of bed, it is an accomplishment. Every day I make it to my job and home again is a miracle, and I don’t know how long it will last because two years ago, I never IMAGINED I’d be hearing myself say that. It’s gotten worse… and I’m only 30.

It’s time to make lists of things that I feel should be listed! Here we go!

My holiday gifts:

Hmm…did I miss anything?

The Ailments to Date — cue the ominous music!

  • Ovarian cysts (15 years and counting)
    • I’ve had 2 laparoscopies to aspirate them as well as more combinations of birth control pills and hormone therapies to try to control them than I care to count. They’re reasonably under control now, but I still have pain a couple times a month. The general concensus is that they’re a result of endometriosis.
  • Migraines (11 years and counting)
    • Took me forever to find a doctor that was even willing to treat them, but I’m on a cocktail of anti-depressants and blood pressure medications that keep them at bay —  mostly.
  • Fibromyalgia (diagnosed August 2008)
    • One walk-in emergency clinic, two PCMs, two rheumatologists, a bone scan, several x-rays, and countless blood tests and physical exams later, it’s official: fibro. The joint pain, overwhelming fatigue, body aches, over-sensitivity to certain stimuli (pain, heat, cold), and inability to focus on just about anything most days really isn’t all in my head.
  • Polycystic Kidney Disease (diagnosed October 2008)
    • All the blood work I’d had done on the way to my fibro diagnosis alerted my various doctors to an unexplained elevated creatinine level. After meeting with a nephrologist and discussing my family and personal medical histories, he ordered an ultrasound to look for cysts. (My dad and his mother both had one non-functioning kidney, probably congenital, and PKD in the remaining one, along with high blood pressure issues; I’d already passed a kidney stone by age 24, and had been in a car accident in ’97 that banged them up pretty bad.) Nothing showed on the ultrasound, but he was sure something was going on, so in I went for a CT scan. Sure enough, cysts ahoy. I’m pretty asymptomatic at this point, but my dad’s functioning kidney isn’t doing so hot, and I remember my grandma living with dialysis for years, so I know what can happen to me down the line. Thankfully, it was caught pretty early, and with medication and diet management, I might never have symptoms. Then again, my kidneys could fail in 5 or 10 years. Good times! :p

I think I’m all listed out. Mmm, clam chowder time…