It’s Saturday, July 18th and my hearing is just under a month away. As it happens, this is one of the more troubling days that I’ve had in the past month, however, none of those days have been in what I would call my “optimum efficiency range.”
Saying “I’m in pain today” doesn’t quite cover it. I’ve tried stretching, cold packs, a hot bath, laying down, sitting up, standing up, moving, and that’s all not to mention the over-the-counter pain medicines I take almost fiendishly. Nothing has worked, nothing is working, and I’m forced to just endure. This is a typical “day in the life,” for me.
At times, the pain can make me feel nauseous or faint – it can cause vertigo as well. I couldn’t leave the house if I wanted to, or do the most basic household duties. (Please understand, that some days I can’t avoid doing certain duties because of how important they are. Examples are: Taking care of my son, washing day old dishes, cleaning up spills, vacuuming my son’s bedroom floor, preparing meals, or any other household related “emergency” that happens within the course of a day.) I have no choice but to do certain things, even under extreme circumstances within the confines of my body. Do NOT mistake my disability for “laziness.”
Today, I can’t even wear a bra, or stand up to bathe. But let’s examine the “I can’ts” a little further, since I am being examined for whether or not I will recover within a year or less.
I can’t shower more than twice a week because of the bending over, and prolonged “standing in one spot,” that is involved. Well, you could say I “would be able to take a bath” – and I do. However, it’s impractical to wash my hair in a bath due to extreme hair loss and tangles. Even if I brush my hair before I get in, it’s still too much of a problem. For this reason, at least ONE of my bathing adventures has to be a shower. Period. You could say I “need a stool.” And you’re right, I do. But who can afford something like that with no income and limited resources?
I can’t spend more than a couple of hours *on a good day* doing regular house work. This gets insane, because with a two year old, I no sooner clean it, then it gets destroyed again. I haven’t had a “good day” since around June 18th, so yesterday I forced myself to vacuum, mop, do dishes, organize things a bit, and cook dinner. I’m paying for that little escapade today in that I’m in more pain than I have been this entire month – this entire month of “bad days,” so that’s really saying a lot.
I can’t sleep for more than two hours at a time, and I dread each night as sleep time approaches because mornings are – The. Worst. I’m stuck in a loop. I hit my peak of the day at around 8-9pm and have the energy (fatigue wanes) and as little pain as I ever have – between 8pm and midnight. That means that when everyone is sleeping, and I can’t do anything around the house – I feel ok. FINALLY. As far as the broken sleep goes, I have multiple areas of concern in relation to pain, so it doesn’t matter which way I lay, SOMETHING hurts. This requires almost constant tossing and turning. Just “going to bed,” for me, is a two-three hour process of excruciating torture. Aaannnd then there’s the morning…
I can’t handle a pen, fork, spoon, or other small utensil in the morning, due to hand swelling and numbness. This has been the bane of my existence for well over a year already. I lose all function of my “Pincer Grip” in the morning. It has gotten so bad that I can barely move/squeeze my hand. I’ve been tested multiple times for diabetes because of this, and all has come back negative. This particular problem is one where I had thought “Maybe this is the worst it could ever get.” Then six months later, I am blindsided by something I never imagined would happen to ME. This has been consistent for the last 4 years, at least. Always pushing to get better, always achieving an entirely new “low.”
I can’t hold my son longer than to put him in his crib – or get him out, on “bad days.” I don’t have to describe how devastating that is. I just want to love on him, giggle with him, roll around on the floor, play with him, cuddle him, pick him up JUST to kiss his chubby cheeks, hold him up so we can see out of the window and pick out things he knows the words of… but I can’t. That doesn’t mean that on those days – or any other – that he doesn’t get the love and care that he needs. It’s just provided for by someone other than me, his mommy. This one makes me cry so hard on some days. I try not to feel sorry for myself – but this it’s hard to hold back because of how much I love him.
I can’t go up or down stairs. That doesn’t mean that I don’t. This has gotten much worse since I’ve gained weight – which brings me, swiftly, to my next point here…
I can’t exercise in the ways I should in order to lose weight. Note that I don’t say only “I can’t exercise.” This is because I LOVE TO DANCE. Dancing helps, too. I can’t do it as often as I want to, but when I do – it’s a real mood changer. I have tried multiple exercise routines/workouts and while I can do SOME of the “moves,” I find that the ones that I really can’t do are the ones that are the most effective at burning fat/calories. Even just WALKING is nearly impossible for about 1/3 out of every month. I never thought that I’d have to be selective about the days I am able to go grocery shopping – let alone do a cardio workout. (So much for a “social life.”) And what “average” person can afford a trainer???
I can’t lift anything heavier than a kitchen utensil/frying pan/pot. Again, this is not to say that I don’t… because you gotta do what you gotta do. But I pay for (in pain and fatigue) every single strenuous thing I do. And you can forget lifting ANYTHING from the floor. If it’s not waist level or higher – NOPE.
I can’t endure long periods exposed to “extremes” of hot or cold. I did away with winter altogether because every winter, it seemed, I was adding a new “symptom” to my already staggering amount of issues. Florida is my new home now, and my choice to move here was largely based on my health. Then I got here right at the cusp of summertime, and realized that extreme heat is not good either. But I’m hoping that there are “three seasons” of reasonable temperatures here where simply going outside isn’t a major concern of mine.
I can’t do my hair or make-up most days. So I’ve evolved from this sassy girl who wears extreme colors of hair dye (preceding health problems making it impossible to get a job anyway, so why not?!) and caring about how I looked when I went out – to that girl who always wears her hair in a ponytail and no make-up. Lifting my arms has, in the past year, become a problem for me. When I lift them (on moderate to bad days) my hands/arms go pins and needles. And there’s that thing about the pincer grip mentioned before.
I can’t get up from the floor without help, or something intermediary to hoist myself up with. This one has been an issue since I was 19 or 20 right after my accident. This one will NEVER go away, not even with extensive therapy. I have an entire portion of muscle missing from my right thigh, and that means that any independent motion involving that muscle is impossible. (For readers who don’t know, I broke my right femur and it tore my front thigh muscle to about 40% efficiency.)
I can’t process my emotions effectively. Just like your internet connection has a “bandwidth,” so do I. So much of my existence is centered around trying to drown out my pain and fatigue with mind-numbing coping methods – that I can’t really even acknowledge that I HAVE emotions at all. There’s just no room in my head for them. Also, trying to take my brain out of the equation of what I feel physically = taking my brain out of feeling just about everything else. Because there’s no way to separate the physical from the emotional “feelings,” they both get indiscriminately zoned out JUST so I can get through a day without going insane. On the plus side of this one – I really don’t sweat the “small stuff.” However, this is potentially problematic during a crisis – because what typically takes a person a few weeks or months “getting over it,” takes me at least twice that time, if at all. </3
The question when determining whether or not I am disabled comes down to this. Will it last longer than a year?
In short, YES. Because it has lasted my entire adult life and inhibited my ability to feel “normal,” in every possible way I can think of. It has been steadily gaining speed and intensity every year since my car accident in 2003. Certain symptoms became debilitating around 2007, and I fought through them, and tried to work, and tried to be “normal,” and failed over and over.
I’ve had to suck up my pride because people have accused me of “faking it,” assuming I was just lazy or incompetent. I’ve had to apologize because my “good days,” are somehow misleading to others as to how genuine my illness really is. On average about 1/4 of my entire year is made up of “good days.” I only ever see people on a good day…
The emotional side to my illness is also somewhat debilitating. To not be acknowledged for something I live with every single day is basically like saying I’m invisible. And I basically am because I can’t do what “normal” people do in order to maintain friendships and relationships. I’m so wrapped up in the state of my body at any given moment that I might even come off as self-centered.
I really need your help. I’m so tired of trying to do this on my own. I need guidance. I need financial security. I need to feel the pleasure of knowing I’m FINALLY self-sufficient MORE than I need to feel the full weight of my physical problems resting firmly on my own (already overburdened and sore) shoulders.
Invisible illnesses are real, and we hide from the world so as not to be guilty in the court of public opinion. It’s hard enough having to deal with all of this (and more!) without being illegitimized by just about everyone.
I don’t know how I could convince you more, so here’s to hoping I win my case.