On a scale of 1-10, my average daily pain level is a 6 or a 7. All-day. Every single day of my life. It’s always there, and cannot be ignored no matter how engrossed in something I may be.
Being in constant pain is exhausting. Fatigue is a huge issue in my life. Unrefreshing sleep is one of the hallmarks of this disease. I sleep about ten hours per night and still wake feeling like I used to in college when I pulled an all-nighter studying. That’s on my good days.
Bad days are more like staying up for three days while having the worst flu of your life. Fibromyalgia has what are called “flares” where the disease is more active than usual. For me, these can last for weeks, and during a flare, I’m almost completely bedridden, sleeping up to 20 hours a day. Literally too exhausted to leave the house, sometimes even to shower or fix myself a meal. Careful management of my energy levels helps limit these to just a couple a year.
Even on good days, energy is in very short supply. I’ve had to learn to plan not just my day, but my entire week carefully. A three-hour grocery shopping trip requires me to build a day in before it to rest up for the activity, and a day afterward to recover.
Cognitive dysfunction is pervasive, especially on days when the fatigue is severe. Putting together a coherent sentence or following a simple conversation becomes a struggle. My favorite TV shows may as well be in Swahili as far as my understanding of what’s happening. Handling money, paying bills, filling out forms, reading Quora questions correctly, all become simply too difficult when I’m tired.
Words desert me. My family has become remarkably good at deciphering what I mean when I ask them to go get me the “thing for the thing” (usually accompanied by a vague hand gesture). I lose track of where the thought is going before I finish a sentence when talking. “Sweetie, can you run upstairs and get…” Get what? I have no idea.
I’ve had to teach my family that a blank stare and a “huh?” means start over with whatever you just said to me. From the beginning. Repeating just the last few words will do no good, and please don’t raise your voice (see below). Slow down. Speak clearly. Watch my face to see if I’m following.
My memory is completely shot. Yesterday I was going into the next room to tell my husband something. I completely forgot what it was before I can completely stand up from my desk. How I wish I were exaggerating for dramatic effect. I rely heavily on routines and reminders. My smartphone is a lifeline. I have so many alarms and reminders programmed in it’s ridiculous. If I had a dollar for every time I showed up for an appointment on a wrong day, I’d have a fistful of cash.
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There’s a hidden silver lining, though. I can read a book (on a good day) or watch a movie repeatedly, and it’s new to me each time. Usually, I’ll get about three-quarters of the way through and turn to my husband to ask him if I’ve seen it before because it starts to seem familiar somehow. He finds this amusing. I prefer to watch movies at home because sitting still for two hours is very painful. It helps to be able to get up and stretch from time to time. We do have a wonderful theater with cushy recliners a couple of hours away now, so that helps.
It’s not just nerves endings that are oversensitive. Bright lights, too much noise, fast motion, slightly rough fabrics, strong smells or flavors. Everything causes pain and distress. If someone raises their voice at me, I can’t understand what they are saying, because the sound overwhelms my senses. They start to sound like Charlie Brown’s parents. “Whaaaw whaaw whaaw.”
Talking on the telephone is stressful. I avoid it as much as possible. My hearing is perfect. I just can’t process spoken words well anymore. Without facial expressions and non-verbal cues, I have a really hard time understanding what people are saying. It’s really embarrassing to ask people to repeat themselves, especially when I often don’t catch it the second time either.
I much prefer communicating in writing. Then I can take as much time as I need. I’ve been working on this answer for about an hour now (and am writing this sentence after the five paragraphs below). On a good day, I can dash off an answer in ten minutes. Today is not a good day, but not so bad I’ve lost the ability to read yet. It’s still early, though.
Fibromyalgia wreaks havoc in other ways besides pain and fatigue. Bowels and bladder are irritable and unpredictable. I make sure I know where the nearest bathroom is at all times when I have to go out. Clean panties and wipes in my purse at all times.
I’ve lost the ability to regulate my body temperature. It feels a lot like having a fever and chills. I can be burning up and shivery at the same time. Any temperature above 75 or below 60 is debilitating. Today it’s 70 degrees here in this room I’m sitting in. I’m wearing a sweater, drinking hot tea, and using a heating pad right now, and I’m still chilled through.
All of this is complicated by the fact that it’s an invisible disease. I look normal, and like most fibro patients, I have developed a good game face. People judge. If I let the pain show, I’m judged as a whiner. If I hide it, I’m judged as a faker when I say I can’t do something. I can sympathize with peoples’ impatience/skepticism. It does seem unbelievable if you haven’t experienced it for yourself.
A lot of people feel I should just “suck it up and push through”. They don’t realize the amount of mental fortitude it takes to resist my own impulse to do just that. I’ve learned the hard way that the price for doing is just too high. If I “soldier on” and mop the floor today after I do the dishes and laundry, I’ll be bedridden for the next three days, and fall behind on everything. But the temptation to do so is always there. It takes a lot of discipline to pace yourself during simple activities you used to do with ease.
The worst part isn’t the physical difficulties. It’s the loss of self-esteem, of self-confidence, of my health. I grieve for the person I used to be. Twenty years in and that loss hasn’t become any easier to accept.
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