This is What Life With A Chronic Illness Is Like:
“One day you feel relatively great...the next day you can hardly move or get out of bed...One minute you’re straightening up the house or garage and the next instant you’re exhausted.”
Coping with Chronic Illness by H. Norman Wright and Lynn Ellis
Note the word “relatively” before the word “great.” That right there shows that this was written by someone who understands what this kind of illness is like.
I regularly find myself so pleased that I am in less pain today than I was yesterday or so much less exhausted than I have been, that when someone asks how I am doing today, I tell them, “great!” And they say, “Good! You’re not in pain today!” And I’m thrown for a loop by that, and stutter, “Well, no..I mean...some...I mean the pain in my legs is bad enough that I’m having a little trouble walking, and it hurts to breath, and my hands burn and my head aches, but...you, know, its not that bad...”
Its all about “relatively.” My standards for a good day are drastically different than anyone else I know.
This is What Life With A Chronic Illness Is Like:
Once you’ve lived with an illness long enough, a number of things happen.
First: You toughen up. Simply feeling sick is not enough to slow you down. A moderate level of pain is hardly noticed anymore. You may be laughing and bustling around and you look like you’re fine. But 90% of the population would be moaning and in bed if they felt like you do right now.
Second: You smarten up, and this enables your illness to hit a slightly more even keel than it once did. You know how to balance your energy, eat the right foods, and you have found a treatment or two that helps. So, unlike the beginning, you now have some days when the illness is not as sever as it can be, when you can, for a short time at least, live some of your life.
Third: You do neither of these things. Sometimes. Some days. You’ll go months toughing your way through pain and exhaustion, at peace with how many of your dreams you have lost, loving each day simply because the sun is shinning or your cat loves you. Feeling somewhat proud of how well you deal with such a hard life. Feeling spiritually enlightened and strong. And then, suddenly, you are undone by the smallest little pain in your hands (not nearly as sever as usual, not even enough to prevent you from picking things up). You cry, and you huddle on the couch and feel miserable and sorry for yourself beyond all description. And you want pity and you want everyone around you to know how hard it is - the pain, the exhaustion, the loss of everything. And you’re petulant and childish and overwhelmed with sadness, with anger, with grief.
It builds up, you see, the pain. Putting up with it, day after day, hour after hour, pushing it back in your awareness so that you can live your life (at least a little bit) and its always there, and its always wearing away at you, at the wall you put up to block it out that never really does. And eventually the shear weight of it is too much and you crumble, if only for a little while, you crumble beneath it and you curl in a ball and quiver because you cannot handle one more minute of being in pain. And the thing that tipped the scale was a small thing, compared to most of your pain: A straw added to the camel’s back.
And exhaustion is exhausting, you know, over time, as much as any pain. It wears away at your reserves, gets heavier and heavier every day until it crashes down, all at once, and what you handled for weeks with a smile suddenly leaves you sobbing in bed and throwing things. You don’t know why your family can’t understand how wrong this is, how miserable your life, how hopeless all that you are facing. You want them to feel it, to recognize the horror of it, and never mind that yesterday was ten times worse but didn’t bother you half this much.
The reality of chronic illness is that, no matter how well you usually deal with your struggles, the constant stress of dealing with such a difficult life, day after day, periodically catches up to you, and you find, at least for a little while, that all of a sudden you are not strong, you are not smart, you are nothing but angry and sad and incapable of dealing with this life one moment longer. But, of course, you don’t actually have a choice in the matter, so eventually you finish your tantrum and go back to being strong, smart and spiritually enlightened, at least for a little while.
This is What Life With A Chronic Illness Is Like:
“Sometimes you feel almost well, while other days you’re incapacitated.”
Coping with Chronic Illness by H. Norman Wright and Lynn Ellis
One of the biggest problems of life with a Chronic Illness is how variable it is. I tell people that I am too sick to work and unable to take care of myself. Then they see me shopping at the Sat. market, zipping down a hiking trail or re-organizing my garage. How are they suppose to make sense of that?
They don’t know that this is the first hike I have been on in three years and that I will likely be unable to handle this kind of activity again for another three. They don’t know that I am shopping my heart out now because it feels so good to do something, but that in five minutes I am going to crash and will be unable to drive or even get myself back to my car.
Its the same with using my handicap parking flag. I get out of the car and I find myself affecting a limp, or exaggerating any aches and pains in my body. I’m embarrassed to be seen using it unless it looks like I need it.
But looks or not, I do need it, even though, most of the time, I’m not using the flag because there is anything wrong with my legs. Most of the time, I use my flag because my energy is so limited that I know I’m likely to crash and be unable to drive home without a moment’s notice, and every little savings of energy may make the difference between my getting home or having to sleep in my car. Or because my energy is so limited that searching for a parking spot or walking an extra 30 feet, is likely to tip the balance between me being able to run an errand on my own or having to wait (again) for someone to do it for me. In the city, where finding parking is a real challenge, that parking flag is the deciding factor on whether or not I can ever leave the house on my own. It is my independence.
But I am use to pain and I am use to exhaustion. And by now, I have trained myself to smile and hold up my head and look normal unless things get really bad. This isn’t because I am trying to hide from reality. Its because moping around, limping and looking miserable makes you miserable. It makes you feel needy and pitiful and weak. And I can’t live like that. Oh, don’t get me wrong, looking like hell has its place, and its important to honor the way you feel. Its important not to insist on hiding it all the time. But sometimes you have to smile and put on a good face because when you are sick all the time, too many days of looking the way you feel just perpetuates depression. And I can’t live like that.
So, I smile and hold up my head and put a spring in my step for as long as I can, not for anyone else’s comfort, but because it is essential to my own self esteem. And it helps me get through the day. But then I use my parking flag, and I don’t look like I need it. And people glare at me, or shake their heads and make a pointed comment to their neighbor, or even walk up to me and say, “Some people really need those spaces and its disgusting that people like you would take advantage of that.” And, while part of me thinks that I ought to feel grateful to those people for being so committed to protecting the rights of people who (like me) desperately need such help to get by. But really I’m just so furious I can’t see straight. And its so upsetting that the next time I use the flag I find myself limping or putting on my most pitiful, sick-person persona and I cary a cane or lean heavily against the side of the car, not because I need to, but because I can’t bear to deal with another person who is convinced I am taking advantage of easy parking because I am lazy, self-centered and dishonest.
No comments:
Post a Comment