When I was a little girl I broke my ankle sliding down our stairs in new bunny rabbit slippers. I vaguely recall having a cast and some crutches, but it's a very distant thing to me now.
When I was 19 I hopped off of my bed and CRACK! There went that ankle again. Another cast.
That same ankle is one I have sprained over and over since then. It is weak and I trip on it easily. The last time I sprained it was just about a month or so ago when I got to California. I was told in 2005 that I have a floating bone and would need surgery to remove it. I elected not to have that surgery as they said I would be down for about 3 months if I did have it.
My life was far too busy. Each time I had an ailment over the years, the ankle situation of 1999, the spraining of 2002, my bout with cervical cancer growth and the LEEP procedure to remove the cancer cells, migraines, vertigo, de quervain's tenosynovitis... all of it... I never took days off. I went right to work, I continued my routine of walking 4-5 miles a day or doing pilates or walking on the treadmill. I was busy, active, social, doing everything for everyone and running myself into the ground. Non-stop Janet in action. I didn't have time to be hurt or sick or ailing! Are you kidding? there were kids to take to school, and after school activities and field trips and parent days and girl scout cookie sales and youth group and corporate prayer, and meeting with friends to get counsel or give counsel. It was a bursting, abundant lifestyle and I rarely slowed down, if ever.
Today, numerous ailments later (and all at the same time), my body is no longer capable of ignoring the very real and very persistent demands of illness. It hasn't been for a few years now and although I have come to accept it in certain ways in recent months, I can't say that I fully have just yet. I'm quite alright with that. Where I am now emotionally is far better then I was just months ago, certainly better then years ago, and I know I will be even better mentally in another year from now, and so on.
But the thing is this.... it never stops being frustrating. As a chronically ill person the expectation (no matter how slim) to wake up one morning and be able-bodied again does not ever go away. That me who could ignore ankle pain and throbbing after a walk, or intense back pain after pilates no longer exists. Case in point, today, on day 6 or so of an intense flare, I went outside and walked over 2 houses down to take a picture of some purple flowers. And oh how I hurt! There are no words to explain it. My head is stuffed as if with cotton balls, my back throbs as though I had been hiking up some steep mountains, and everything that seems insignificant (the sides of fingers or a part of an arm)is screaming in agony.
While in a flare that lasts for a period of days or weeks it starts to get more agonizing than usual. It feels like the real world is so far away and these four walls are the only walls I will ever see again. Seriously.
Can you recall when you've had food poisoning and it hurt to move, to breathe even? To be touched? How you had to race to the bathroom to vomit or purge from your digestive tract? How life felt like hell?
Or how about the last time you had the flu or some kind of 24 hour bug that left you curled up like a fetus begging for relief? Can you conjure that up in your mind?
Now couple that with that time you went to that amusement park and you walked all day and when you climbed into your hotel bed that night your feet were screaming and every muscle was on fire?
That's Fibromyalgia.
Everyday.
The word flare is so ridiculous to me, because honestly Fibro is one big flare. From the moment it becomes a reality in your body it is simply the way life is. Pain. Fatigue. They take turns playing bad guy and honestly, the pain is much preferable to the chronic fatigue. At least with pain the head is clear, but when fatigue decides to take the upper hand all bets are off. The head swims in fog, the eyelids urge to close every second, and the grouchy factor kicks up about 20 notches. Who wants to be around people when all you can do is sleep?
What's been bugging me lately is the prejudice people have about invisible illness. From the stink-eye lady on the airplane to people in my daily life, to well meaning family and friends. Here is what you have to understand: FIBROMYALGIA IS DIFFERENT FOR EVERYONE.
Some people who endure it can work, but perhaps they don't have any viruses with their order of Fibromyalgia supreme. Perhaps they do not suffer from chronic fatigue. There are so many different factors that contribute to each individual case of Fibro.
My aunt for example has Fibro and she works full time.
That's great for her, but at my stage, that's not possible. I've tried. For two years I tried out my good ole "ignore it and keep going" pattern and I drove myself almost to the brink of insanity. Seriously.
It makes me sad that people feel like they need to force themselves. That I felt like I needed to force myself. That I sometimes still do, especially, ESPECIALLY during a flare. That is when we are at our most weakest. When the lies become big and we feel like failures because we can't even handle sitting in a room with another human being.
I am so over the prejudice about Fibro.
Look at who you are judging.
Is that person in your life someone who used to be there for everyone else? Was she/he a social butterfly? Were they happy, upbeat individuals who were down for a meal or a spontaneous drive to the city? Were they active? Did they have a job? Did they work hard?
I think one of the most trying things about this sickness is the judgment from people that have known me my whole life. Who saw me with a car full of kids 95% of the time, and knew how dedicated and excited I was about living my life to the fullest.
People who now roll their eyes when I explain why a big television makes me feel like I am going to have a seizure. People who try to fix me with their suggestions or who bury me deeper in quicksand when they tell me how their friend or brother's friend's cousin's neighbor's baby mama can work 70 hours a week or exercise everyday for 3 hours and has Fibromyalgia.
If that is true, kudos to them! That is excellent... and also a little sad, because the truth is, they are probably pushing themselves to the limit and although you may not see it, I can pretty much guarantee they are curled up in a ball of extreme pain and turmoil at the end of the day.
So no thank you. It has taken me over 2 years to reach a place where I can be honest about my limitations and who I am now. I am proud of the places God has brought me through emotionally and physically. A place where I no longer have to act like I have it all together and I can admit I need help. A place where I can admit I am sick and not be ashamed.
So it is you, eye rollers of this world, scoffers of invisible illnesses, that I feel most sorry for. Because one day your whole world just may get pulled out from under you with disease or strife and you will have no idea what to do with yourself.
I only hope that those in your sphere will accept you and love you, and not ignore or belittle your very real pain and sickness, because it hurts, it really does.
