When I was a little girl I lived with a lot of pain. So many myriad forms did that monster take that I lost track of all his faces - it was simply part of my daily life. It wasn't until I ran away at last and started settling into a more mundane life that I realized the pain still followed me like a hungry dog at my heels. Parts of it were expected. Aches where broken bones healed funny without the aid of medical intervention. Old scars. Layers and layers of cicatrice coating my soul.
What I didn't expect was the creeping pain in my muscles and joints. My eyes, swollen and inflamed, inflammation in my vascular system slicing through me like knives.
I was pregnant at the time, and something was wrong.
My pursuit of answers never was for myself. It came at the hands of a worried new mother concerned that her little one would somehow be broken - I wouldn't let that happen, so off to the doctor I went. I'd become convinced that I had achy muscles and joints from walking to work. Or carpal tunnel from painting. Or stress. Or... something.
It was 2002. My baby, now born, was beautiful and perfect and I could barely hold her without pain. Then one morning it happened. I awoke to step out of bed to find my right hip fused in place, swollen, red, angry. It emitted fire like I'd been sleeping on a space heater. I went crashing to the floor, helpless to stop it. The rest is a bit of a buzzing in the back of my head. Rheumatoid... a big scary word on its own, but I also had Fibromyalgia and Neuropathy. The doctor that said in five years I'd be in a wheelchair. There was talk of surgery to scrape away the damage.
Anti Inflammatory medications that do nothing for you.
You stop caring if Ben-Gay makes you smell old.
You beg for heating pads, blankets, socks...
You're always cold.
You stop being embarrassed of the handicap tag, you're just greatful to have it.
Weekly injections whether you like needles or not of things that feel like liquified bee stings running through your veins.
Good days, followed by bad, followed by not enough good.
It starts to take over all your days. The helplessness of it all. It never goes away. It's always something there in the back of your mind informing your choices. If I go on that hike today, will I be okay the rest of the week? I have to work Saturday, so I better not do too much Friday. Hmm... not sure about hanging out, the drive is awfully long, not sure about those stairs... and so on. Some days I was lucky enough to just feel like I had the flu, the worst days? I couldn't move off the couch without screaming in pain. Crying as I beg my husband to help me to the bathroom, or to help me off the floor of the shower where I've fallen. Again.
I'm thankful that he understands because he grew up watching his father go through this, but heartbroken because that means that he one day too might get that same bad news.
By 2007 I was finally in what I could best describe as a remission. The aggressive treatments had me finally feeling human again - but I made a horrible mistake - I thought that meant that I could stop taking everything. Stop seeing the specialist. Put the handicap tag in a drawer.
It was January 25, 2014. A really big day for me filled with tons of goodness. It was the day of my first degree initiation. I was so excited, and nervous, and ready to be officially a part of a family that I already loved so much.
By 1 am I was weeping in pain.
I'm still not sure what made it come back so fiercely. Perhaps the stress of it all. I was just coming off a divorce and getting my life together in a meaningful way, and I just simply had so much on my shoulders. It came crashing down on me so hard though... and one doctor after another berated me for ceasing my treatments. I guessed I'd wanted so much to believe that it was gone for good, that I fooled myself into believing that it was. It took months to finally get through batteries of opinions and second and third opinions and get back on track. The doctor that said at my age he was too afraid of lawsuits to treat me. The other that said I should feel lucky that I don't hurt as much as other people. My handful of daily pills that grew and grew until now I take around a dozen twice a day and am just greatful with all my heart for a new medication that means I don't have to take the shots anymore.
According to my little bit of research the disabled are among the most stigmatized people in the US. Considering any person can at any time join those ranks, it seems a little shocking. But I rarely park in a handicap space without getting some kind of vitriolic response from a stranger. (just recently an elderly gentleman scoffed at me saying "Maybe one day I'll get bad enough to have a special place to park too.")
I guess all of this oversharing came from an experience yesterday.
My daughter had opted to go assist my aging father (even monsters grow old I suppose...) sweep out his shop. He inquired with her where I was, and Rooster, being the kind person that she is mentioned that I was unwell. You see, I'd been on the couch since Sunday battling the pain I've gotten too used to from a flare up. Rooster though, pointed out that I was being a trooper and was trying to stay as active as possible. She threw in that I'd even managed a trip to the market.
What he told her in response has ruined my state of mind. "Don't mind her. She's just being lazy. Always has been." (Let that sink in for a second - I'll wait.)
Rooster reports that she changed the subject and got done as fast as possible and left. She was upset on my behalf - she understands. But the fact that this man, a man on disability, looks at me and sees a lazy person, has driven me to madness. I have work ethic. I'm motivated. I'm driven. I run two small businesses and a family. I've finished two degrees. I work on a million and one things from running this blog to running a pagan group - and I wish I could do more. I look at all the things that people I admire can manage and I wish I could be right there with them. But I can't. Not every day.
I feel almost like I need ritualistic assurance from my family that I'm doing enough. Was going to the market and putting away groceries and doing the dishes enough to earn a vicodin and some time on the couch? Do I need to maybe clean the dining room as well? I know if I just sit down for a few hours I can manage making dinner... and they look at me with these pitying eyes because they know that I have nothing to prove but still have a need to. Those ghostly parents that wanted me to keep going no matter what are still in the back of my mind saying "go go go!" Anything less than productive feels like a moral failing... I don't know how to not feel that way.
I've always defined myself by what I can do, as though I don't have worth or value if I can't contribute. My poor therapist must be sick to death of me asking her if I am in fact lazy for wanting to lay down when the pain is too much.
Remember those ridiculous pain scales they put in hospitals? Rate your pain on a scale of smiley face to crying face? Used to, anything over a three or so was enough to sit down and wait out. That's how regular people function anyway. But you know what? I haven't even seen pain at less than the proverbial "5" in years. I always function at that level. That is a good day for me. I don't even remember anymore what not hurting feels like. Taking care of myself and keeping myself functional has become a full time job, and everything else is a list of things I make time for, or squeeze into my life (often at my own detriment).
I just want to live and be happy and pain free without some asshole feeding into my deep rooted fear that this illness is somehow a lie I've told myself so that I can be lazy. Just because you cannot see an illness, doesn't mean it isn't there.
I'm not sure what this blog is about anymore.