Having a Chronic or Neurological condition quickly introduces you to the idea of limits; not the “Golly, I’m getting older and can’t jog those 5 miles anymore” kind of limits but your own evil invisible bean counter and his minions of invisible beasts. This is the guy who seems to have been given free reign to punish your body and its systems according to a rulebook you will never get to see, but is 14 inches thick and makes the tax code look simple.
So, yeah, the first few months, remember: you are diagnosed but it doesn’t have to stop you right? So you do “a bit of gardening” which ends up with you dropping the TV remote 10 times that night and waking, your hands in painful claws asking, “What the hell happened to me!”
What do I mean by ‘Limits?’ Let us be clear, this isn’t able bodied (AB) world anymore: you will be in pain, restricted in movements, activities, fatigued, weakened and other indignities. That has nothing to do with “pushing your limits” or anything like that, in Chronic and Neuro world that is called: “Normal Life.” What I am talking about it are the invisible and individual limits; like a parolee wearing an ankle tag but one in which the penalty is often so strong, it isn’t worth trying to push the limits, only to try to safely find and stay within them. AB thinking goes “If I do a 5K jog, yes I will hurt TODAY but once I have done it 10 times, then it will actually FEEL GOOD.”
Chronic and Neuro world is where if you try to do something equivalent to a 5K jog, you will not only feel crap today, and tomorrow, but for some time. And if you keep doing it, while your body may show you new tricks where you end up in ER, you will never ‘FEEL GOOD.’ Indeed, by the time you have done it five or six times, you’ll swear you will kill anyone who tries to makes you do the equivalent to a 5K jog and you will mean it.
Because Chronic and Neuro World living is about self-preservation, and the preservation of the quality of your life. You focus on what you CAN do, and what you know to be the most you can do, or about the most possible, with the least pain or loss of body function, and still be able to do it again tomorrow. Only, you know that you will sometimes HAVE to push that boundary a bit (It’s your birthday!), and yes, you will pay for it. But what life in C & N World means is that you know these boundaries and limits will change, and can change, without notice. And because of that, you are always on the lookout.
The first time I really went out and at it was six weeks into my wheelchair. I had fun wheeling along the waterfront 5K trail and back until I was exhausted. I felt sore, I felt tired, I had loss of function but essentially I felt ABLE BODIED – wow, what a good workout! Well, until the muscle and limb spasms started, and then my temperature fluctuated up and down and my entire bowels emptied in three hours of one crap after another while I was so weak I could barely sit upright. Then the pain hit, so painful it blew past any pills I had and it didn’t go away but stayed for two days, leaving me a rag doll which couldn’t move for a few more. Yeah, what a GREAT work-out!
So, then after a few more trips PAST my limits (“Limits, how can I have limits, I am Elizabeth Freaking McClung?”), I spent a summer playing a little tennis. I had no problems. It was only in the last time out for the summer when I was starting to win. I didn’t want to quit at 45 minutes, so we played an extra two games. Three hours later, the spasms started, “No! No!” I’m crying, “It was only two games!”
Linda is saying, “I think we will have to cut back on tennis from now on.”
“IT was only TWO GAMES!”
This is because I know that later that evening I will be on the toilet. I might be tied there to stay upright and my arms will be spasming and twiching and I will be in agony so bad I will actually scream a few times, and after the 12th straight dump Linda will creep to the door and ask, “Anything I can do sweetie”
And I will grate out, “Do……we…..have…..a…..gun?” And after another hour or so, when I have stuffed myself with chalky substances I will reach a point where I take as many pain pills as I can and am carried to bed because I can’t care anymore if I shit myself, it is just that bad. For two extra games of tennis.
So yeah, you tend to get a good idea of where your limits are, and how badly you don’t want to break that envelope. And each person and each condition and maybe each person with each condition gets to know their personal invisible bean counter and the beasts wait to inflict punishments. Do the doctors? No. Not unless they are very good at listening, and I haven’t found many who are as good at listening as they are at deciding. Do the Occupational Therapist, or the Recreational Therapist or the Case Manager or so many of the people who come able bodied and try to understand what only you know from personal and painful experience? No. What they might try to do is understand if you are lucky. But more often, if you are unlucky, they already have a space to plug you into and a hammer to try and make you fit (in case your experience isn’t what fits that space).
Of course, if you are like me and the idiot ‘in charge’ person has decided that you are a bit of a whiner and you just need to “suck it up” (a real phrase told to me when I tried to explain my specific limitation), I don’t need to get revenge, my body does it for me. Nothing like 30 minutes in an non air conditioned vehicle where I am quickly too weak to reach oxygen and I soon turn a funny green colour, pee myself and then flop over. That DOES get them to pay attention. But then a week after you get back from the ER you get the letter banning you because obviously YOU, the one they KNEW had a disability and the one who suffered is the problem, NOT the person who didn’t listen to you. The phrase, “This program obviously doesn’t seem suitable to someone of your special needs” pops up a lot.
Limits dictate and dominate our lives, we watch them, we know them, and we anticipate them. We realize that if WE, the ones who have ended up taking responsibility for our life and health not because we are mature or wanted to but because we cannot afford the alternatives, miss any little something it is US who will pay the price. We know that in our case, physics is wrong, that for certain actions there is not an EQUAL reaction but a wildly disproportionate one.
And yet, even amidst all of this, you will get blindsided, like this morning when I was woken with all of my upper body muscles fully contracted and my fingers and fingernails clawing into themselves. “What did I do!” was what ran through my mind while I was too weak and couldn’t unclench my muscles to bang or signal and ended up calling weakly, “Help! Help!”
My night care worker heard me and came.
“I’m all locked up!” I said, “It hurts and I’m tired.”
She took in the rigor of my body and said, “I’m not surprised.” (This is why I like her, no running around screaming, just, deadpan jokes). She carried me to the walker, put me on the seat and pushed me to the bathroom. Then she helped me pee, helped me relax some of my muscles, gave me a pain pill and a sedative and got my earplug out of my hand where my fingers had locked, rigor mortis style over it. So I slept and woke up feeling, yeah, a bit like one of the garbage trucks had backed over me. What did I do? I reviewed the day, was it not enough rest, too much talking, you know the mental drill of review, review, make your best guess or in the end chalk it up to “the condition” and just hope to hell it isn’t a new and regular part of your life.
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