May 12 is International Fibromyalgia Awareness Day
Fibromyalgia means sleeping as much as your cat...
Life with Fibromyalgia
You can have it for years and decades without knowing that's what's wrong. You wind up hearing "What is wrong with you?" over and over again in angry voices.
No matter how bright you are, at times your memory becomes a steel trap that mangles anything that gets into it. Or you make incredibly stupid mistakes doing things you've done well all your life. Or you're so tired you can't keep your eyes open after a good night's sleep while doing something ordinary. The nap attacks can strike any time.
Deadlines become a nightmare. Somehow nothing gets done on time no matter how much you plan for it and how much extra time you allowed for the project. I can't do art commissions, because people reasonably expect prompt finishing on the project. Any project larger than one or two sessions may take years to complete before I have enough good days good enough to work on it and get focused on that project instead of anything else that's been put off for a good day. Like getting my room tolerably clean.
Housekeeping can get away from me living in a single rented room. It's all right when I first get in. It's nice and clean, there's a burst of emergency energy unpacking and arranging everything, some stuff stays packed in storage because there isn't space but the boxes get put somewhere easy to get. Life's good. But over the weeks and months, some things never get done. Dusting, or cleaning off surfaces. They don't get done or done often enough.
Some habits help to forestall the day of reckoning when it becomes unlivable filth. Being meticulous about always having a trash can next to wherever I sit and always tying off the bag as soon as it's full and putting out another one leaves a trail of little tied off garbage bags leading to the door. On the rare occasions I go out, I picked up all those bags to get them to the dumpster. A good system when I was living alone.
It made the difference between the pile of filth being all laundry and good things that need to be cleaned and sorted, or the pile including actual trash that ought to be thrown out. Explaining what isn't trash to people who helped me move and helped shovel out said heap was hard, also embarrassing. How could I let things go that much?
Like a blind person, I need to have everything exactly where I put it. Some of that is to make sure it's in reach when I can't get out of the chair, or put away where it's out of the way unless I want to use it. There's a slow circulation of art supplies between the shelves and little stacks on the floor and on the table, between mediums I'm using currently and those I rotated back to make room for something I want handy.
When I get things from the shelves is when I go to the bathroom. I go past them carrying something that goes in the bathroom and on my way back, pick out a book to read or something to draw with that I missed several hours ago or yesterday. If I've been meaning to do something for a while, eventually I'll put it close enough that I can get to it on a bad day.
It's why almost all of my art is 9" x 12" or smaller. Not only do I want to fit it on a scanner so I can post it online, but I need to be able to work curled up in an armchair or in bed. Most artists can stand at an easel, it's very good exercise. If you're not sick and want to get thin and athletic, take up painting. Get a French easel and go hiking with it on your back. Stop at the first pretty place and paint it. Do this several times a week.
You'll get skinny and fit and strong and with enough times doing it, become a really good painter if you weren't before. It always seemed like it'd be more fun than grim calisthenics for the purpose of improving yourself because you're not good enough.
Let's talk about Not Good Enough, shall we?
When your Best Isn't Enough
That's a big one. That's one of the things fibromyalgia does. It slams a lid on what you can do in life, a hard limit where everything has its price and everyday activity is overpriced. Some people with fibromyalgia work. When they do, they sacrifice a lot of the things people get to do on their time off in order to make it to the job and keep up with the abled. I'm one of the 30% who can't, partly because I have multiple disabilities including skeletal mobility limits.
It took me over ten years to get social security, because fibromyalgia is invisible. It's hard to diagnose. It would've been easy to get into the system on mental illness because I had all the symptoms of depression and was actually depressed a lot of the time. Who wouldn't be?
If you try and try, and everything you want to do turns to nothing in your hands, if you can't even keep up with everyday living and your home is a pile of filth, you live on instant food because you can't prepare your own food, you spend days and weeks of doing nothing because you can't make it out of bed in the morning and it hurts to do anything, that's depressing.
I have no idea what life is like for peolpe who don't have chronic pain. I had it in childhood, which I understand is pretty rare. But I also had to endure gym and sports injuries almost daily, due to my other disability -- one leg 3cm shorter than the other. So maybe my childhood pain wasn't fibromyalgia. Still I do remember many of the fibro symptoms at that age too -- the digestive problems, the way my fingernails hurt, the 18 tender spots were all going painful for no external reason even in grade school.
Fibromyalgia is an autoimmune disease. Your immune system gets stuck on permanent Red Alert and attacks your own body often. Any stress can set it off. When I get "fibromyalgia flares" the pain can be so crippling that I literally can't move or get out of bed and I go out of my mind from pain.
The pain scale from 1 to 10 is something I had to rate by how it affected me, because I learned to ignore pain no matter how bad it got. Boys don't cry, remember? That was my generation. But I was a crybaby, because Pain Level Nine is when I'm going to cry no matter how ashamed I am about it and no matter what I'm feeling emotionally. I can be in a happy good mood and if the pain spikes to 9, then I'll sit there with tears running down my face.
Pain level 8 is when I'm losing it -- becoming unintelligible, making stupid mistakes. Getting people's names wrong. Asking the same question five minutes after the first time I asked. Getting annoying about it. Writing flows freely at that level but is mostly unintelligible. Level 8 is as uncontrollable as level 9 and ugly because I don't recognize that I've turned into a blithering idiot. My apparent IQ drops to stuporous subnormal capacity and people think I'm lying if I claim to have written novels or done other intellectual things.
Pain level 7 is a bit better, if I slow down and I'm careful I can handle things. I'm foggy but aware of the fog and aware of the pain and able to do some mental things if I'm very, very careful about it.
Pain level 6 is a crabby irritating bad day where I can ignore the pain if I'm doing something that takes concentration and still do it well.
The lighter levels, pain five is starting to be a good day. Pain level four is a great good day where I'm able to do things I can't usually do. Pain level one, a completely pain-free day, is a weird euphoric exquisite joy that I've experienced a few times in my life under anesthesia. It's so mind-bogglingly distracting that I do stupid things that'll injure myself because I believe I can. Before Bextra was taken off the market, I had pain free days when I was taking that for arthritis plus tramadol for fibromyalgia pain.
Now, I get by without it and remember what that was like. But Bextra also gives people heart attacks even if they never had heart problems. 10% of them. Too dangerous to keep on the market, so I have to live without it and remember what that brief time when I had it was like.
I didn't mention the worst, Pain Level Ten.
I define Pain-10 as when I want to kill myself. Fortunately for my survival, I'm so weak at that point that accomplishing it isn't possible. I just want to. The pain is more than I can endure and want to keep on living. I deal with that by distracting myself and doing anything I can to bring the pain level down. Now that I understand it, now that I know what it is, I know it's the pain talking and that like the tide, it will go out again after that unusually high tide.
I don't go near balconies or up on high places when I'm in pain level 10. I nearly pitched myself off a hotel balcony once when I got a bad day on a third floor, what convinced me not to was the thought that it might not kill me -- just leave me even worse paralyzed and hurt even worse. I finally realized this is the root of my fear of heights. I don't have good balance or the strength to hang on by my arms if I was hanging from a rail or a rope, I'd lose my grip... and if I was in pain ten, I'd let go on purpose and regret that on the short trip down.
People with migraines get that level of pain. I've had many housemates with chronic migraines and one lover, so I'm aware of how debilitating migraines can get. I'm courteous with migraine people and leave them in the dark and quiet, it's all I can do. It's hard if there's only one room though and I can't read or anything to get distracted from my own pain.
Then I get told it's all because I'm depressed and if I just pretended everything was fine, it would become fine. If I just cared about the things I don't bother to get up and do, if I cared for my personal hygiene and cleanliness, if I did the day to day things everyone does. Therapists were always keen on that as a measure of self esteem.
They're probably right for people who do have mental illness. Maybe clean sheets and a frequent shower do lift mood. They sure lift mine when I've got help with it and get it. Otherwise I just do what I can to stave off the inevitable, do what's in reach and try to make the ends meet on a brutal physical energy budget.
The thing is, pain is itself exhausting.
When I have pain medication, as I do now -- my life is a thousand times better now with medication than it was before, when I didn't know what was wrong -- I get some of that energy back. I can do a few more minor picking-up trips. I can sweep part of the floor or pick it up when my cat yarks or clean his litter pan. I can do my own laundry if the machines are close enough. If they're not, then it waits and I have to stretch it, put up with it as long as I can till I do get help.
I have help now, living with my daughter's family. Both she and my son in law help me with day to day living and keeping my room clean.
I know I do feel better when I smell the lavender cleaning bucket she uses, lavender oil in water, and she goes in and does my bathroom. It lifts my spirits. I smile. I go in and feel good. I might have the energy for a shower. For several years I couldn't do showers, only baths, because I couldn't stay on my feet that long. If I wasn't up to that, then there were sponge baths. I did what I could.
All those years I lived on my own, I did what I could. I pushed the edge of what I could do with stubborn intensity, not giving up on the stupid easy things that everyone does without thinking about it. And then I'd get people telling me to exercise, that it'd do me good and help me get strong... when calisthenics take the day's meager body energy and throw it out the window into activity that doesn't accomplish anything of what needs to be done let alone anything I actually wanted to do, like going outside to draw something in the yard.
My best was never good enough.
It wasn't enough to keep a job. I'd be on this boom and bust cycle of getting work that I was good at, focusing intensely on it while learning, push myself to emergency efforts week after week with no sleep or unrefreshing sleep because of the pain. Then gradually I'd get sick, push myself to work on sick days in pain 8 or higher and wind up crying at the machine like a fool, not able to not do so, and make really stupid mistakes on the job. Take sick days. Take too many sick days. Have to leave that job.
Then weeks of rest and watch any savings from the flush time when I was working evaporate, maybe lose an apartment. Then get up and do it again. These were all office jobs and not particularly physical ones. I can last longer at a keyboard than I could standing up, I wouldn't make it through one day of a physical intensive job.
Then I'd remember my grandfather bragging that he was never sick a day in his life. He wasn't. I can't comprehend what that must have been like, but it made him hard on anyone else who did get sick. He didn't know what to do with it. When he did get sick, the only time he got sick in his life, it was fatal.
I got used to struggling without hope and pushing things a little too far, making sacrifices. Doing things I knew I'd pay for and lose the weekend to make it through the work week. And then still lose it in the long run, still not be able to keep up. That's the worst of it, that awareness that I can throw my best efforts into something and still get nothing in the way of results. So my world narrowed, and narrowed farther.
I almost managed self employment as a street artist in New Orleans because the warm climate was better for me and I lived close enough to where I set up that I could do it. Tourist season was fine, it paid well, so well I could go out two or three days at the top of the month and have my rent and bills in one good weekend. But when I got so sick I couldn't make those two or three days a month, then I couldn't survive on that either.
I never panhandled. It was in about the same spirit that until I got to the pain clinic, I never took aspirin or acetaminophen without a dozen friends bugging me to take something for it because they could see how bad it was. I was afraid to take pain medicine because I knew I'd take it every day, all the time. Truth is, I need to take it all the time.
But I didn't panhandle because it wasn't just a counterculture thing to do instead of working, it would've meant admitting I couldn't do anything else. I hung onto that for a long time. Oddly, I look back and that's one inner boundary I never crossed. I'm not proud of it now, just aware of it as part of how I lived and how I looked at life. I always gave something to panhandlers if I had anything to give.
I knew things had to be harder for them, right? All I had to compare with was my own experience of life on the edge of disaster. So if they fell off that edge, they had to have it really bad in more ways than I could count. Or they really were just free spirits traveling along on their long legs, doing what I couldn't, drifting across the country seeing everything because they could. I didn't resent that. I wanted to do it.
There are real lazy people, who won't do anything if they can get someone else to do it for them. Then there's the opposite of laziness -- too much stoicism, too much sticking to pride and not doing what could help, not asking for help when someone's actually willing to help. It's hard to live with either. But chronic illness can build that kind of stoicism by accident.
It's because what is inside your own body, what's behind your eyes, something human tells me that's how life is for people. I have trouble to this day grasping how different I am. What life is like for people who could run for three miles for the fun of it and actually have fun doing so, then still have the energy to go to work, put in a full day, do something else vigorous in the evening or maybe spend an hour playing with their food before eating it because that's fun to them. That even calisthenics can be a hobby that's fun for some people with the gradual slow successes of watching their muscles build and waistlines slim down.
Nothing is more cheering than getting a little bit of success at something every day. Looking back at the day and having an accomplishment in it. I'm not depressed. I learned fast that I can't waste time or emotional energy on stress -- that I had to get my life together.
It's self rewarding. Reduce stress in life and there's so much more life left over for spending on drawing or painting or watching Terry Pratchett movies or hanging out with friends. People who aren't disabled work themselves into the ground to keep up a killing pace at some jobs, or hold two jobs and still can't make their bills. It's not uncommon.
Or lose entire weekends to marital arguments or roommate arguments without thinking about that loss, without anything other than it being a bad weekend. Life catches up to them too if it gets too bad, but when the bad stuff creeps up by slow increments a little worse every day, it's hard to know when to cut bait and let go of the bad situation.
So I've learned some things from living with fibromyalgia that can help people who don't have it. Life's too short for marital arguments. Invert your social priorities, be nicer to the people you live with than anyone outside the house and home becomes a serene happy cool place to be. You have more time for the things you really want to do if you get along with the people you live with and are gentle with them. Especially if they are also gentle with you.
Doctors Can Be Wrong
Question the doctor.
Get second opinions, preferably from specialists. General practitioners are very good for common problems. They can handle traumas well. They can handle common situations well and refer to the right specialists. They are very poor at diagnosing invisible illnesses and will shunt you to a psychiatrist faster than you can blink.
If antidepressants don't help at all but a simple acetaminophen or aspirin helps, then what you're dealing with is physical pain, not emotional trauma. Even if you're surrounded by conflicts about your inability to keep up with normal things and the ways you fall short, even if there's good reason for emotional trauma, an aspirin does nothing at all for it. But if it makes you feel better, then chronic pain is in the picture.
If you have chronic pain, go to a Pain Clinic.
They are hard to find and often have long waiting lists. But the pain clinic doctors are amazingly respectful and understand everything. I can remember the night and day difference between my pain clinic doctor and the GPs that I was trying to get my prescriptions renewed with. The GPs were so worried about potential substance abuse that they cut my dose in half because "it's a high dose of a controlled substance."
My pain clinic doctor explained it was controlled because it's easily abused because it's safer than aspirin or acetaminophen or other over the counter medications. Tramadol also known as Ultram is over the counter in Europe, available without a prescription. It's what the pain clinic doctors recommend first and most often because it 's not addictive.
I didn't want to get into opiates at all. They lose effectiveness if you take them too often. Most pain drugs do. Oddly enough the Ultram hasn't, so I'm very grateful to be able to stick to the safest pain medication instead of having to go on six-month rounds of changing drugs so that they still work. Some people have it a lot worse than I do.
As soon as the pain clinic doctor heard me say "I don't even want to try opiates. I know they'd only work temporarily and then I'd be stuck with a medical addiction on top of everything else" he knew I was not a drug addict.
Come to find out later on that the other reason they get scared of high doses is that some over the counter and harmless drugs get cooked down into illegal drugs by gangs. Yeah right. People sell their pills. That's what everyone down and out does, right, desperate people don't ignore a resource because they can't afford to.
Only like panhandling, it's something I never did because I knew I could not stand up to prison conditions. Some things I've just been cautious because the risk wasn't worth the temporary benefits. Illegal sources of income fell into that category.
The thing about mental health services is that like all specialists, they will interpret any symptoms in terms of their own specialty. I didn't know that my crooked back and tics from fibro and posture caused by right side hemi-hypoplasia combined with intermittent fibromyalgia fog -- the flares that reduce me to disorientation, confusion and outright stupidity -- look a lot like the long term side effects of antipsychotic medications. There's some of the misdiagnosis right there. I had to talk to my daughter, a pharmacy technician, to come to understand just why I got that misdiagnosed for that long.
I'm not an alcoholic or drug addict. But GPs rarely see any patient wearing mismatched clothes that were the last semi-clean things in the pile with poor hygiene and shuffling walk, the bad smell of too few showers and a stink of fear from anyone but drunks and druggies. Anyone that poor might take to drink to deal with it, right?
I never did for a simple physiological reason -- alcohol didn't bring down the pain. It reduced my ability to hang on and control myself, to deal with the pain or distract myself from it a lot faster than it would actually reduce any physical pain. I have to be in a really good mood to enjoy a drink, I have to be having a good day. If it's just a tired bad day and not a big pain day, the best I get is falling asleep on half a glass of wine or a mixed drink.
Which is sometimes all right -- it's great if I've got a cold. I can knock it out with a rum toddy that has lots of honey in it to feed the immune system and sleep 14 hours, putting all my body's resources toward fighting the cold while I don't have to be awake to feel the symptoms. I have no more patience with acute (temporary) illness than anyone else, only with the stuff that's all-the-time normal to me.
What's every day becomes normal, whatever it is. Human beings adapt to the unthinkable all the time, if it's sustained long enough. For me that was levels of pain that impair me and levels of fatigue that mean I can't keep up with all the activities of daily living. I can and do live well with help. I'm happy now in ways I never was before, because I did get to the pain clinic and do have help and live with a gentle loving family who don't stress me because they know that wouldn't accomplish anything.
It's no use shouting at someone who can't understand what you're saying, unless you just like to be sadistic. But it won't change their minds about anything. Say it quietly and reasonably and they might listen, hear them out and you might understand why they don't agree that your views are reasonable. I learned a lot about conflict resolution when I knew I had to reduce stress. Sadly, I also had to give up vigorous debate, when I used to enjoy that.
If I flare and lose my eloquence as soon as it gets stressful, then I lose debates and don't present my views well. Better to leave that to someone who doesn't get tongue tied after being insulted or provoked. Online it's possible to occasionally debate in print -- there's always taking a day to relax, calm down and return ready to write well and express my points.
It's hard to convey what it's like to find a way to live that isn't right on the edge of survival. It's been five years now, four or five years since I had to deal with the hard parts. Since I had to question whether I was going to eat or have a shower, whether I would get anything done clearing up or be able to sleep. Life's so much better even within these limits.
I suppose I'm like any living thing. Like a plant pushing itself up through a crack in the concrete, I found conditions I could survive and grow, and so now I've been growing artistically and personally. Obstacles are just obstacles, sometimes they can be overcome. I was always an optimist under everything, except if the pain got too bad. Knock the pain down and I turn into an optimist again.
But think twice if you're around someone who can't keep up. Sometimes they're neither lazy nor crazy, sometimes it's just an immune system set on overdrive rather than bad habits or a bad attitude in life.
What May 12, FMS Awareness Day means to me
As a kid who couldn't walk or do the things other kids could do, as a kid who knew I needed help and wasn't getting it, I was jealous of the polio poster kid. I was half dead all the time, in intense pain, no one took it seriously and everyone told me it was my own fault. All my life I've seen those Unicef cans and all those other things to raise money for other people who must have been better kids or more important kids or kids who had more photogenic diseases.
I was just lazy, good for nothing, a loser, crazy, snap out of it, what's wrong with you?
Finding out it was real mattered a lot.
Finding out it wasn't insanity, that there's nothing wrong with my mind and that my personality is all right, that was heartening. I'm not crazy. There's nothing wrong with me being me.
Today is my disease day. Today, it's diagnosed and people are educated about it. I can tell someone "I'm having fibro fog" and they don't expect me to remember to remind them about something. I can ask others to remind me about things that matter to me -- like the reveal date for an art challenge, which if a friend didn't remind me, I'd skip and never post the artwork.
It means people know what my disability is and how I work around it. So I wrote this article on May 12th, on my disease day, to help share some of my story and let people know what it's like living with an invisible disease. The humiliation is unintentional sadism so many times. People who don't believe you're sick think the best way to get you on your feet is to push you, because some people really are just lazy or whatever and do thank them for it afterward.
I am so grateful they did this, that there is an International Day of Awareness for it. I'm not left out. I'm not standing here just as sick as anyone else who's that sick, being told it isn't real and I ought to pull myself together and maybe walk some miles for someone else's disease, when I can't manage to walk an entire block even if I had some compelling personal reason like drawing the rose garden at the end of the block.
Some people with fibromyalgia can walk like that. It's the other disability that stops me. So if you can do those walks for raising research money -- please, do them. If you can't, for health reasons, then that does not mean you! Sit by the keyboard and do something else. Tweet or whatever. Or wave and wish them well.
I'm waving and wishing you well, everyone out there who's participating in Fibromyalgia Awareness Day. No doubt some of you are more articulate and more medically detailed in what you're writing. I have trouble remembering all the details of the medical stuff, but the page on Facebook is great for that. It reminded me some of my symptoms aren't some new thing or arthritis degenerating but something I've put up with all my life that won't get worse - rather cheering, that. Fibromyalgia is not degenerative, it doesn't get progressively worse. That's something real to be grateful for.
Here's the link to the Facebook group.http://www.facebook.com/#!/event.php?eid=85376507309&index=1 which is where I found out about this event. I didn't quote all the bits about all the symptoms. What I'll say now is that I do have all of them except the migraines, very glad I don't get the migraines. All 18 key "tender spots" -- I remember filling in the silhouette on the pain chart and thinking I was putting too many dots and splotches, that there were too many places that hurt all at once. They were all the ones that led my doctor at the time (a fibro specialist) to recognize it was fibromyalgia and not something else.
Considering most of the something else diseases are degenerative, I'm lucky.
Thank you. Thank you for doing this event. Thank you for telling me that my life's worth as much as the polio boy's.