Fibromyalgia Awareness

May 12 is Fibromyalgia Awareness Day.  People are asked to wear purple to help raise awareness.  But how aware are people, really?  I have been thinking about this, and decided it's time to jump back into blogging, so let's start with this topic that affects my daily life.

People have asked me what Fibro feels like.  I usually tell them to think of how lousy they feel when they have a bad case of the flu: aches, pains, exhaustion.  I tell them that's how I feel daily.  That is the easy way to explain it.  The truth is quite honestly, depressing.

I was diagnosed with Fibro a couple of months before my 30th birthday.  I had been to a variety of doctors and specialists for several years, trying to figure out why I felt so horrible and was only in my mid-20's.  The diagnosis was a relief and a curse, at the same time.  I remember numerous thoughts going through my head at the same time.  "OK, it has a name.  We can address this."  "Thank God it isn't terminal."  "It's a chronic illness. My grandparents are in their 80's; I'm going to have to deal with this for the next 50+ years."  "There is no cure."

Nine years later, I am still learning the hardest part. Moderation.  I am consciously aware that doing too much today may bite me in the backside tomorrow, or the next day.  Sometime in the past few months, I stopped making to-do lists for the weekend.  I'm still making them at work, but it's more to keep track of the various projects I'm handling.   I am trying not to obsess over what gets done, or what doesn't.  Maybe in another 9 years, I'll be able to say I have mastered moderation.  I doubt it.

On good days, I may only experience mild pain: muscle aches or dull pain in one appendage.  I'm able to put in a full eight hour day at work, talking to everyone who calls and carrying on like a normal person.  I can come home, fix dinner, clean up the kitchen, and sit down and work on my knitting or read a book.  I don't think about the pain. Yes, it's there, but it becomes background noise to my life.

There are different levels of pain.  There are muscle aches.  There are dull pains through muscles or joints.  There are stabbing sharp pains through the bones (or at least that is what it feels like).  There are stabbing pains that are both white hot and ice cold at the same time, which pulsate through portions of my body.  There are surface pains, that feels like a deep bruise coming out.  And there is the surface pain when any touch, no matter how slight, makes my skin feel like it is on fire.  The fun of it all is that it's usually not the same from one day to the next.  With arthritis, your back may bother you for days.  With Fibro, today it could be the back, tomorrow the wrists, the next day the knees.  Today could be a muscle ache day and tomorrow is a don't touch me at all day.  On the worst days, the pain comes in many layers and crashes over me in waves.

There are things I have said that cause people to look at me oddly.  "The shower felt like glass" and "it hurts to wear clothes" are two that come to mind.  On the days that my system is sensitive to touch, stepping into the shower is torture.  The water drops sting and prick my skin as if I am being pelleted with shards of jagged glass.  Those are usually the days it hurts to wear clothes, also.  I have certain pieces of my wardrobe: flowy dresses for summer and soft jeans that are one size too big for winter, which I wear on the days it hurts to wear clothes. The less touching the skin, the better.  Everyone at work knows if I am wearing a dress and we don't have something special going on at the office, then it's a don't touch day. 

The pain is just one part of Fibro.  Exhaustion is another.  People with Fibro do not achieve REM sleep, that deep restorative sleep your body needs.  Our bodies never "recharge".  We don't sleep well, which means our bodies don't go through the natural healing process.  Then the pain keeps us from sleeping, which aggravates the pain. Sometimes it feels like I'm a hamster on a wheel.   I have learned how to function on 4 or 5 hours of sleep. The nights that I only get 2 or 3 hours of sleep are deal-breakers.  If the day following those nights is a work day, I call and tell them I'm going to be late.

I rarely wake up feeling refreshed.  I could sleep for three days and wake up exhausted.  Some people might think "OK, so you're tired.  So are a lot of people."  Let me see if I can explain.  It's taking a shower and having no energy left, that the only option is a nap.  It is standing at the foot of the stairs on my way to bed, and feeling as if I'm not trying to climb one story, but rather Mount Everest.  It is feeling defeated as I look at the stairs and realize the only way I'm going to climb them is to crawl and even then I have to stop to rest every couple of stairs.  It is going about my daily errands, feeling fine, and then suddenly feeling like all the life has been siphoned out of me in a second.  It is being in the grocery store, getting to the milk aisle and wondering how on earth I'm going to manage to get through the checkout and to my car without passing out from exhaustion.  It is being too tired to think; when thinking becomes a strenuous activity.  It is sitting on the couch, exhausted, knowing I would be happier in my bed, but too tired to try to climb Everest to get there.  It is feeling like an empty shell, something that could be blown away with a light breeze. 

Pain. Exhaustion.  Then there's the fogginess.  Most days, this is not a problem for me. But on the days that my head is cloudy, I feel like a danger to myself and everyone.   I get in the shower and stand there for 10 minutes before I remember why I'm in the shower.  I turn on the stove and forget that I've left something cooking (or water boiling to prepare something).  I sit at my desk at work and check, double check, triple check what I'm doing because I can't remember if I did it. Then a few minutes later, I look at it again because I don't remember doing it.  I find it hard to concentrate, even on things that don't matter.  There are some days with the fog that I am not sure I could spell my first name if I needed to.  I try to recognize these days, and warn Erich that I shouldn't be trusted around the stove or knives.  Or potentially my car, since there have been times I've driven to work and then don't remember getting there.  (Fortunately, I live 3 minutes from work.)

The fog days are extremely frustrating.  The pain and exhaustion may slow me down, or even sideline me for a day. But the fog days make me feel like a blubbering idiot.   I wonder if this is how my grandfather felt as he battled Parkinson's disease.  He was a very intelligent man, and slowly the disease ate at his mind and he didn't want to talk any more, because he couldn't find the words.  The fog days are like that for me.  I struggle to find the names for things I have known for a long time; words as simple as book or window.  I resort to trying to describe them "that opening in the wall through which we can see the outdoors", which leaves me sounding like someone learning English for the first time.  Sometimes, it is easier to give up on the fog days and retreat under the blankets.

Every work day, I wake up and give myself a mental pep talk.  "You can do this."  Some days the pep talk is not enough.  At work, I split my day into segments: before lunch and after lunch. Why? Because at lunch I come home, relax, take a little nap.  When I go back after lunch, I mentally tell myself "Only 4 hours left."   If I have a meeting it's split even further, as some meetings are particularly stressful.  On those days, once I make it through the meeting, my mind says "OK, you handled that, you can do the rest of the day."  It seems that I am always talking to myself in my head (and sometimes out loud). 

I tell myself it is ok to sit down and relax when I get home, instead of rushing to make dinner. I tell myself it's ok to let the dishes sit, and it's ok if I don't have the energy to unload and reload the dishwasher.  On Friday nights, I make plans in my head for the weekend.  For example, today was the day to change my bed. Last night I thought I would make a couple of fleece blankets today, because the bed is my work surface so I can only do it when the linens are off the bed.  This morning, I decided to skip the blankets.  I am working on not feeling guilty, or lazy.  I am getting better at listening to my body.  And I'm getting better about not apologizing for doing so.

People love to provide unsolicited medical advice.  "Go Gluten-free", "Cut out sugar", "Don't drink diet drinks" (for the record, I never drink diet drinks).... as if something so simple could magically cure an illness that the medical community has been struggling to understand for decades.  I try to be gracious when such advice is offered, but I also ignore it.  I have a team of doctors that I see regularly.  Including one of the top neurosurgeons in the state of Ohio, who stays on top of all the latest studies.  We have discussed all these notions, as well as the studies I read.  My doctors listen to me, they listen to my concerns.  We talk about medications, we talk about changes I may want to make.  All decisions are made based on my input.  These professionals have gone to medical school so that we can turn to them for advice, and I trust each of them. 

I get a one hour massage once a month.  It is not a matter of pampering, but of necessity.  The massage helps loosen the muscles and reduce the pain.  If I could afford to do it, I would get a massage every two weeks just so I could feel better.

I know people think I am lazy or weak.  The truth is, I am an intelligent, passionate, creative, perfectionist.  I have a very strong work ethic.  I have been working since I was 16, and the days that I have to give up to fibro are days I would rather be working.  I enjoy traveling, spending time with loved ones.  I have too many hobbies to which I'd like to devote more time.  I like to throw 100% at everything: work, hobbies, travel.  I may not have 100% to give every day, but every day I am giving it my all, even if that all is only 20%. 

While I may be physically weak, I am mentally strong.  I found a quote the other day that said something to the effect of "I am strong. I fight my health every day in ways most people don't understand. I am a warrior."  That quote spoke to me.  I am not lazy.  I have been betrayed by my body and every single day is a battle.  While I may have to fight this fight for another 40 or 50 years, I hope to continue to have the stamina to fight it. 

On May 12, wear purple.  When someone comments on your outfit, tell them you are wearing it for the warriors who are battling Fibromyalgia.  Please do not judge us, do not write us off as lazy.  Try to understand that which you cannot see.  If you are a person who believes in an Almighty, then you already do this. It is called Faith.  Have compassion.  The next time you have the flu, think how lucky you are that the pain will be gone in a couple of days.  Please do not get upset with us if we change or cancel plans.  It is not anything personal against you.  It is just our bodies, betraying us again.  Trust me, we feel badly enough, and would really rather be spending time with you.  Know that if you ask how we are, and we smile and say ok, that we are still probably battling some pain.  There are no days off from Fibromyalgia.  It's just some days we can look and act like normal, healthy people, and then some days we cannot.  Spread awareness, and spread understanding.  I am hopeful that someday, there will be a cure.