Tuesday, January 29, 2008

Chronic and Neurological Conditions: Limits and Envelopes

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.


cheryl g. said...

Testify sister! I sooo get what you mean about the bean counter.

Sorry this is short - freaking weather has my pain levels climbing so it's more drugs and try to sleep time.

Wanna go in with me and find a supernatural hitman to take out our respective bean counters?

Lene Andersen said...

Can we timeshare that hitman, Cheryl??

That was wonderful - loved the bean counter and rulebook. And yet again, it comes back to the AB's not quite believing what we say. I had a doctor not believe I had fibro for over a year. On the other hand, when I first got it and thought I was losing my mind, I once apologized to a social worker for not being able to focus past 30 minutes into a meeting and when she said "of course not, most of your brain is busy dealing with the pain", I could've kissed her feet because she gave me a reason for why I'd become an idiot. Once in a long while, there's someone who knows.

Going to sit and whimper now. Damned bean counter.

Gaina said...

I don't generally believe in a notion of pure evil...except when it comes to physiotherapist and occupational therapists. *lol*

I've never met a disabled OC, they are always bright, athletic young things who don't have a friggin clue about the person they are 'helping'. I had one when I was moved to a mainstream highschool and I actually had to say to my mum 'I don't want her back because she's interfering with my way of doing things and making life harder!'. Soon after, she was gone and I could actually get on with life unimpeaded! :D

I was just wondering last night, do you have any other people in your area with disabilities that you can get support and advice from?

ms bond said...

OK...that explains a lot about yesterday. Yesterday where my body decided not to work. At all. Only I know, in the back of my mind, that I have no friggin clue 'cause it is going to get worse. ah, see, winces from everyone who has ever met me. I just said it will get worse. It will get worse. Accept it. Doesn't mean I like that idea. Doesn't mean I am peeing my pants in anticipation. So reality bites. And I guess this means that yesterday my body said no more climbing the Taj Mahal on the stairmaster (I like climbing the famous landmarks on the stair master...it makes it feel less like I am using a dumb repetive machine while hanging onto the supports for dear life and more like I am in India doing something cool). No I think my days of climbing the Taj Mahal may be over...gasp. That hurts. I was so looking forward to upgrading to the Great Pyamid (despite the fact that the Great Pyamid does not have nice eight inch high steps carved into the side of it). Thank you for getting to the root of my pain- I suspected it was caused by that more than vigorous workout but was denying it with my whole heart. And brain. Welcome bean counter.

Tui said...

Hi Elizabeth,

I don't have anything special to say, just that I am glad I found your blog via Nablo-whatever-it's-called-again!

I'm over here in Italy, as you know, and I enjoy being able to read your words and wish you well. :)

Elizabeth McClung said...

Cheryl: hope things are better now - I do find the bean counter to be terrifyingly exacting and in far more precise control than I. Considering that I continue to defy the limits (but only a little!)...and pay.

Lene: Thanks for the story about the social worker, it is amazing when poeple "Get it" even just a part of it. On the phone yesterday I had to say to someone, and this was one of those "disability over the phone interviews" I listened and there was a long pause and I said, "I know that you just spoke a bunch of words and I recognize that but I have no idea what you said" (meaning, I just reached the 'huh?" and stare into space zone).

Gaina: I too have an aversion to both simply because my OT's have the "perfect solution" which will cost more than my rent and my PT will usually after 20 minutes go, "Ahhh, I could work on you but I have to tell you, there's no point, and I'm probably damaging more muscles than I am helping" - ummmmm....thanks.

Actually no, I don't have any friends since the MS society able bodied social worker told me that I can't hang there becuase...I don't have MS and 'facilities are for MS only'(well I never said I did! I just have some things in common.) And the parapalygic association wasn't sure I "fit" exactly. But I keep trying. I did have the first annual MSA meeting of Vancouver Island - sorry, that was a sad, sick joke.

Ms Bond: You were unaware MS was progressive? Sorry. I am sorry your body did the "I no work today" thing but on the other hand some days it has the "hey everything is pretty fine" which is when everyone tends to decide to catch up two weeks of life and end up back in bed again.

I know I am not supposed to be amazed at stuff becuase that annoys me to bits but you have MS and you were doing like lots and lots of stairmaster every day? Um, horaay, um, I guess. I mean, you don't need a cane, just for someone who talks about falling A LOT, it wasn't the first exercise choice I thought of (recumbant bicycle?), but cool; I used to love the stairmaster, way to tone! Yes; you are free to deny you age, your emotional maturity, and raise your levels of silliness but chonic conditions tend to bring out the "I think that is enough" side of maturity whether you want it or not. Sorry. Or I misread your post and was wierd and or condescending, in which case sorry again.

Tui: I am glad we can still connect even though that november thing is over.

Elizabeth McClung said...

I feel I really failed on this post; I realize now that becuase each person is different and each condition is different, that it was the abstract, rather than the examples which people could relate to (which they couldn't because they don't have my condition). Oh well, good thing about writing...we can always try again!

em said...

I loved reading your comments on this. I as an AB believe you guys, and do think it could happen to me, and know that you have experiences that I can't relate to. So I'm glad to read you and also not terribly supportive in the I so dig where you are coming from sort of sense. I'm glad your community has found each other. I'm beyond grateful that you all say your truth. (As you can see I'm avoiding great swaths of my truth on my blog.)

cheryl g. said...

Having been an EMT while I was duty stationed in Death Valley National Park, I have to tell you your symptoms are very familiar. You described the symptoms of nearly every patient I ever treated for extreme heat exhaustian because their body was no longer able to regulate their temperature. I've even been there myself.

As for me... ehn... all the many broken bones have also resulted in osteoarthritis. Which leads to my motto... "Just say YES to drugs!"

Veralidaine said...

Haven't heard from you today Cuz! How's it going? Do I need to send a curly whiskered rat to whisker-tickle you until you come blog?

FridaWrites said...

Hope you're doing okay. Me.

em said...

I'm just checking in because you haven't written in a few days and I'm thinking about you. I hope you are doing okay.

Elizabeth McClung said...

Em: oops, yeah, sorry, I am not trying to knock AB world just highlight the difference of my thinking (and what I notice in the thinking of those around). Actually, it was more an problem in my own anticipation, I mean, as you will see in today's blog, when EMT's can't relate to you, you know you are kinda OUT THERE. So, I keep putting in examples becuase I want people to know it is real, but I want to sort of know what other people's "payback" or "gone too far" looks like.

Cheryl: Thank you for putting a name to a condition which makes perfect and absolute sense considering a) not really sweating at all and b) summer (or inside a heated gym in winter).

I also say yes to drugs. Even though my doctor is a no-no guy. I told him hi from the guy who now works at Red Cross who was a volunteer at Cool Aid and wanted to know my GP, I said, you know, dresses like L.L. Bean and he said, "That the guy who hates drugs and won't give them out." at this point my doctor laughed and said, "I guess I do have a reputation" (hey a bit of denial would help here doc!).

Veralidaine: Um, no, not better but um, am back to writing and have a new blog up and thank you for checking in. Good to know that someone notices when I disappear (though I told the EMT's today, "Next time you see me face down, just pass on by")

Frida: when you wrote that, I was actually very NOT okay but I wrote and will keep writing, okay or not, and maybe someday soon I will be okay again. Golly, so pollyanna am I!

Em: You really are caring - it does help. I will keep going (though if there are other options anyone wants to suggest.......no, they never do).