Showing posts with label support. Show all posts
Showing posts with label support. Show all posts

Sunday, June 29, 2008

In sickness and in health

I went to a wedding this weekend. I went armed with meds - usually my purse is good for a few ibuprofen, tylenol, various anti-diarrhea meds, allergy pills, and even a stray decongestant. Pretty much everything is OTC. This is only the third formal occasion I have had to go to since becoming chronically ill and the first two were unpleasant to disastrous. The last one, I spent the majority of the evening hunched into a ball with menstrual cramps from hell hoping I didn't pass out in the bathroom. "Never again!" I swore, hence the meds.

This particular wedding was much better than those last two. I can't always predict when I'm going to feel unwell, and if I do start to feel unwell, I don't know if it's going to just be a passing unpleasantness or end in an ER visit. One thing that helps is to know the people around me are caring and competent so that if (and really only if) I am taken down, I can count on them to help me out. Unlike the person I went to the last two weddings with, my current partner is an actual grown up and can manage to take care of himself and even me if I need it.

Another thing that helped me feel comfortable enough to go to this was that the bride is a friend who is herself chronically ill. Endo, wretched IBS, and fibromyalgia (or ? - she's still in the throws of diagnosis) top the list of things my friend B____ has. This means I didn't have to go into the wedding with apprehension about looking bad or making her feel bad if I had to bail. Of all my friends, I know B___ will not take it poorly if I ditch out in the middle of everything because I'm feeling unwell.

Fortunately, yesterday was pretty decent health-wise for me. My gut's a little screwy - my doctor increased my elavil, gave me a script for donnatol (which I'd rather not take if I can help it), and scheduled me for another colonoscopy since there's been enough increased pain and potty trips that I'm starting to lose weight again. But the pain wasn't as bad as it had been the night before, no nausea, and I was otherwise ok. So I made it through, and happily, B____ seemed to make it through with only one trip through my purse for ibuprofen.

What struck me about the wedding and what is the reason for my post was the vows she and her partner exchanged. Her health status featured prominently in her partner R____'s vows. I wish I could remember them because he managed to put into words sentiments which were so honest and understanding and, well, just right, that I thought "Yes, that is exactly it". If I can get a copy of his vows and the couple's permission, I'll post them up here.

Friday, April 4, 2008

inflamed

Still on the prednisone. I think I'd like to stop but I guess I'm supposed to taper. I haven't been on it long, although it's a high dose and I suppose better safe than sorry. I'm ready to be done with it though. Yes, my hip feels excellent. My gut hasn't felt this well in some time, and so far (knock on wood) I haven't had a single GI side effect from the prednisone.

However....every evening something starts up where my neck, shoulders, and upper back are just killing, and all along my lymph nodes is so sore I feel like they're going to pop. My primary care thinks the pred might have unmasked a minor tonsilitis/sinusitis thing. Sure, why not. My tonsils are of the chronic variety, plus it hurts in all the likely places so that explanation fits. But man, it feels like having a head cold on steroids. (that was a joke, get it?)

And so I've about had it with looking fabulous and feeling shitty. I'll take looking shitty and feeling less shitty, really. However, that's not entirely why I'm blogging. I'm blogging because I just got a health-reduced lifestyle related smack upside the head and it's making me feel totally toxic. I need to get this out somewhere, and well, here's this blog waiting for things to be put into it so what the hell.

I think I've blogged about this or related issues in the past here. I'm not sure. I know I linked to Christine Miserandino's excellent essay, The Spoon Theory, (read it!!!) on the topic of the additive and preemptive ways you limit and are limited when you have chronic, as in daily, health issues. As it plays out over life, the consequences are further reaching than just the things you can't do. I've particularly struggled with the frustration and sometimes near grief over the things I was planning to do but had to cancel. It gets so discouraging sometimes I will simply avoid making plans so I won't have to deal with canceling them.

On top of my own feelings, which are varied and strong, about cancellations, avoidance, or other manifestations of wellness related limitations, I deal with the feelings and reactions of the people around me. Sometimes these fall short of supportive. E.g., I found out today a family member believes that when I limit myself, I am in fact just fine but would rather not do whatever it is I had planned to do, what I wanted to do, or what this family member wanted me to do.

At the moment, this bit of news leaves me immensely frustrated, discouraged, and disappointed.

Monday, January 21, 2008

No floating

Cross posted. I had written this on another blog (which is less health related and more other general stuff) but it has become something which I think fits well over here in No Harm.

Today we had a three and a half hour mini-conference in my department. As with so many academic gatherings, we were cramped in a way which recalls that line Tom Hanks delivers so excellently in the Coen brothers' remake of The Ladykillers: "We academics are inordinately fond of wedging ourselves into confined spaces."
Gosh, it seems almost criminal to add to such a perfect summary, but I feel I must contribute a resounding HELL YES.

I admit, I've always been a bit prickly about my personal space. However I've come to regard big name talks, mandatory meetings, and other high turn out events with a nasty mix of trepidation, embarrassment, chagrin, and preemptive irritation since losing the totally taken for granted guarantee of a non-painful hip. It limits me in ways I wouldn't have even imagined. One of them is sitting. Another is accommodating and navigating the wedging in process.

While the rest of the academic world continues its love affair with wedging behavior, for me it poses a genuine physical threat these days. Today's gathering was, my god it was like we were going for a world record, like some crazy kids from back in the 50s or 60s or whenever it was kids crammed themselves into phone booths or swallowed goldfish. Today's gathering was so crowded that even senior, tenured faculty were seated in the far less desirable chairs lining the walls of the room rather than at the big table (the big table was all full up with the overly punctual bigwigs and presenters). Several junior grad students sat on the floor. A few stragglers ended up sitting in the hall, crowded around the open door like the proverbial hobos around a barrel fire. I saw our newest faculty hire (a youngish, terribly quiet man they lured here from somewhere in Europe) sitting in the hall, furthest from the door at one of those "desk-chair" monstrosities.

Since I know what to expect (hard rigid chairs with negative leg room if I don't see to matters in advance) I arrived a half an hour before the first talk, rolling in front of me one of the cushioned, adjustable chairs from my office. I set my chair up where it looked like I'd have some leg room if I needed to straighten my leg out a bit, which I often need to do when I sit for a long time. Unfortunately, due to the crowd, even before the time the talks started, I'd been hemmed in by chairs pulled in from the hallway.

As talk time approached, a young woman holding a chair approached me, or more properly, approached the space I was occupying. She walked up in front of me from my right and stood there holding her chair aloft, looking expectantly at the small slice of empty space I'd managed to keep in front of my left leg. I didn't move my legs to let her pass, hoping she'd quickly give up and look somewhere else. She saw me see her, saw me not move my legs, but she continued to hold the chair up the way a toddler might hold up a cup she wants refilled by her mommy. "Ok," I thought, "She thinks I'm being rude, which I arguably would be if I didn't have a really good reason to need this space. I'll explain." I addressed her: "I'm sorry, I need to keep this area a little open because..." and as I was saying "I have a hip problem" she huffed, sighed exasperatedly (over my words), then half turned (one of those taken for granted liberties of a pain free hip) and wedged her chair down into the slightly less open area a bit off to my right.

My god that pissed me off.

Not because this alone was such an offense. It's irritating but I wouldn't be blogging about it if it were just that. It got me because this is the second time in a week I've had an encounter like this.

The first was when I was walking across campus. That time, two men were walking two abreast toward me on a wide path. I was keeping to the right. They were keeping to the middle. To my further right was snow and ice packed up just beyond the long muddy, ice crusted puddle which bordered the edge of the path. The men advanced, and I adjusted my angle a bit to the right. The men continued to advance and by now it was clear there would be no passing them on the right without hitting the puddle but if I tried to cut over to the left of them, I would have to pivot on my left leg and move quickly to avoid colliding. So I stopped. At this point, the one to my left saw me and started, improbably to move to his left, bringing him further into my path and also straight into the shoulder of the man who he was walking with. They bounced off one another, then split, then we all came to a stop for a moment, during which time I made eye contact with them and shrugged. They veered off to my left and I resumed walking, now a bit past them when one of them said in a quite abrupt tone "well WE were taking our cues from YOU!" I didn't stop walking but looked over my shoulder. He was stopped and looking, well, pissed. His friend was a few steps ahead of him and looked apologetic. The pissed off guy nearer to me yelled"I GUESS SOMEONE'S HAVING A BAD DAY?!" I stopped and turned back and said "I have..." but got no further since he had by that time spun around (another hip maneuver) thrusting his hand down in a "oh just forget it!" gesture, and walked back to his companion muttering.

Not worth it, it being allowing myself the luxury, god...the JOY of engaging him in a massively hostile confrontation which would suck up half my energy for the day, but damn what a dick. I thought about the encounter for a while that day. Then I forgot about it. After the young woman with the chair, after seeing that she looked so annoyed, I thought about it again. Since it felt so shitty not to say anything further to those guys earlier this week, maybe I would feel better if I said something to chair-lady. I considered trying to explain to her at the break why I had asked her not to put a chair practically on my lap. But what do I accomplish by soldiering on and explaining? I am certainly not contrite, although I am somewhat embarrassed to even need this accommodation. But I don't feel bad for her, not exactly. Do I want to make these people feel bad, feel as bad as I felt? Not really. Do I want them to understand and not think ill of me? Paradoxical as that is given my irritation at this kind of behavior, I do think that is more the likely cause.

Since today's first talk was one I'd heard before, I had some time to consider these situations and my reaction to them in the space immediately after my encounter with the chair wielding woman. And here's what I decided. I don't really give a shit if someone that clueless thinks ill of me. Impatience or gross self importance, clearly it's a sign of a flawed character - someone who I probably would not like, or at least a side of someone I wouldn't like. Many, many years ago, before I had arthralgias and the various "moans and groans" which have changed the landscape of my day to day life, I decided that I needed to stop letting it eat me up if people I didn't like didn't like me. The situation which prompted the decision to at least liberate myself from wanting some kind of approval even from people I didn't care for was just one of those run of the mill workplace irritations. Probably this is something other people learned in 8th grade but I'm a late bloomer so it wasn't until my late twenties that I realized what the hell did it matter if someone I disliked thought ill of me, providing we could keep things professional and civil?

So today, I extended this to the people who can't manage to not avoid putting themselves on a collision course with me while I'm walking slowly and with a limp, to the people who won't take just a second to be decent about being asked to make a very minor accommodation, to the people who are slightly inconvenienced so I can be (just be) without hurting myself. I pissed her off. I can't casually glide out of the way of very important men. I'm stuck forcing them to notice that crowds do not simply part for them - which means that maybe, despite what their mommies and daddies raised them to believe, we don't all live to accommodate them. I can't float like a butterfly so I suppose what's left is to sting like a bee and learn to be ok with that.

Wednesday, July 18, 2007

with coffee spoons

The Spoon Theory by Christine Miserandino is an excellent, I mean truly excellent essay about "what it's like to live with sickness or disability". While reading it, I thought of T.S. Eliot's Prufrock measuring out life with coffee spoons.

The essay is linked through But you Don't Look Sick, (oh another great name) which I just discovered was founded by Ms. Miserandino. Well done Ms. Miserandino!

For anyone who is interested in knowing what it is like to live without the luxury of good health in a world which presumes all are well (or well enough), I offer more words from the poet as advice. Do not ask what is it. Let us go and make our visit. Read the essay.