The difficulty with support networks

One of the problems with support networks is that the people in them have their own priorities. Now, that’s not anything against them – every person has different priorities from the person standing next to them. Even if you take a couple in an incredibly close relationship, they’re going to put different value on things. That’s the nature of human beings.

The trouble creeps in when the priorities downright clash.

Right now, I’m not supposed to be walking much at all. Not until I get my new knee brace, which should be the middle of next month. It’s inconvenient. It means that I have to use my scooter everywhere, and that’s a bit difficult. You see, I live in a house with 3 steps up to get in the front door. So I can’t just wheel my scooter out the door. Also, I don’t have a trailer or hitch-mounted carrier for my scooter, so to take it places, it has to be broken up and put in the trunk, then hefted out and re-assembled. The scooter breaks down, sure…but even broken down, there’s a 50-lb piece, which is far more than I can heft without hurting myself.

Now, typically, the boyfriend does all hefting of the scooter, and drops me off places. However, the boyfriend’s uncle just died yesterday, and he’ll be driving a couple hundred miles to his family for the funeral. He’ll be gone from Tuesday until the weekend, most likely.

I’ve called friends, and no one is available. I thought I was in big trouble. I really can’t get around without my scooter!

I lucked out this time – my neighbor is willing to give me a hand. We built a ramp a while ago, but it’s too heavy for me to move. My neighbor will put the ramp into position so I can wheel on out. I’ll use public transportation (which includes a longer ‘walk’ than I can do even when my knee isn’t busted, but I’ll be on wheels!). When I get home, my aide will put the ramp back out at night so I can come in (or she’ll break down the scooter and carry it in piece by piece – that may be easier for her, because she’s a small woman and the ramp is 8′ long).

It’s scary, though, when you need help and you go through your support network and NO ONE can help. It’s frustrating! Part of the problem is that when you have a major disability or a chronic illness, your support network is often thin because of the sidelining affect that ablism has on you and, well, we’re often less able to go out and socialize. So you end up leaning on everyone harder than you should. You find yourself begging favors of the same handful of people over and over and over, and you can only hope that you don’t burn them out.

And when you burn out one of the few people who helps you, man are you ever in trouble. So far, thankfully, I’ve been able to avoid asking the same people for favors more than a few times each (with the exception of the boyfriend, who kinda does everything), so I’ve preserved my social network as best I can. That looming threat always worries me, though…the thought of ‘what would you do if one of these people stopped helping?’

One can only hope it never happens.

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A moment of typical EDS…

We got home from our vacation yesterday.  It really was a nice trip, and my parents and the boyfriend’s parents met for the first time.  They liked each other.

So we get home, and we’re both kind of tired.  The boyfriend brings in all the stuff, including my new-to-me scooter.  My parents brought it out; it belonged to my grandmother, who passed away a little over a year ago.  It’s good to have a mobility device that will allow me to get around more, though this is a bigger, heavier scooter than I would have bought myself.  That’s kind of a mixed blessing – on the one hand, it’s more powerful and can do more (like managing hills and going over grass); on the other hand, I can’t lift the thing myself – we’re considering getting a carrier we can hook up to my car’s tow hitch so that I’ll be able to have it when the boyfriend isn’t around.  Money we don’t really have, but on the other hand, the scooter will be at its most useful when the boyfriend isn’t there to help me.

Anyhow, all of this is kind of besides the point, because I was going to give you a typical moment of having EDS.  It was around 9:30 last night, and the boyfriend and I were both downstairs.  I was relaxing with a novel, he was theoretically surfing the net with his phone but dozing off a fair amount of the time.  I got up to go to the bathroom, and as I started up the stairs…POP!

Yeah, that hurt.  My left knee…something was definitely wrong.  I’d gotten about 5 steps up, so I was kind of stuck.  I called the boyfriend over, and he helped me down the stairs, my arm over his shoulder and him one step below me.  We managed to partially dislocate my left shoulder as I stepped off the last stair, because of the difference between his height and mine.  I needed to get down to the ground to assess the damage to my knee, because the place it popped in wasn’t where it usually does, but I couldn’t bend my left knee without pain or support any weight.  The boyfriend had to catch me under the arms from behind and lay me down, which isn’t as easy as it sounds.

Once I was on the ground, I could definitely tell it wasn’t the usual, and that’s a bad thing.  ‘The usual’, with my knee, is my kneecap partially or completely dislocating, which is painful sure but easy to fix.  This, though…the pop was centered over my patellar ligament.  And oh yeah…I still needed to go to the bathroom.  I tried to sit down and just scoot backwards up the stairs, but our stairs are relatively steep, narrow stairs, which is really hard to get up that way, especially when you don’t have great upper body strength.  In the end, I had the boyfriend fetch my crutches, which at least let me manage my weight in a way that is easier on my upper body.

I’ll tell you, it was one of those times when I was willing to accept the humiliating possibility that I might need a commode on the 1st floor.  I haven’t needed to use a non-toilet ‘potty’ since I was a little kid being dragged along on road trips by my parents when I was old enough not to be in diapers and but young enough not to be able to give much warning before I needed to pee.  (Their solution to that, as I recall, was to use a collapsible kiddie commode type thing)  Well, I haven’t with the exception of the one time with the really, really bad flu that landed me in the ER and almost had me kept inpatient for a few days.  The idea of needing one in my house?  Not a pleasant one.  I doubt the boyfriend would like the idea much either, as he’d be one of the people who had to empty it, as I only have an attendant for 2 hours a day.

I got in with my doctor’s office today (though not my usual doctor) and there’s concern that I may have partially torn either my patellar ligament or my lateral collateral ligament (that’s the one on the outside of the knee, and a typical tackled-from-the-side football injury).  I get an MRI done Friday (yay, let’s put the mildly claustrophobic girl in a tube again!) and we’re really hoping that either I haven’t torn anything and just inflammed stuff or it’s a small enough tear not to need a repair.  Surgery is a definite possibility on my horizon.

I can’t go to work because I can’t get to my office in my scooter (you can only get to about 1/2 of the offices on my floor without going up 3 stairs and down 3 stairs).  It’s just as well, since I should be icing down my knee, and shouldn’t be walking back and forth between the room I work in and the room my supervisor is in, and it’d be mighty inconvenient to keep getting on the scooter, going 20 ft, turning around, driving back 20 ft, and then hopping off the scooter and back to my desk.  Because I’m technically a volunteer intern, I don’t think the ADA requires them to figure out a way to make it work for me.

Yup.  That’s a typical EDS moment.  Most of the time, we look just fine and maybe even are fine, but every now and again, BOOM, it gets you.

It’s also leading to some not-so-good service dog partnership moments.  Hudson isn’t used to me walking with crutches, and moving at a much slower pace than usual, so he’s not pacing me well, which means he gets ahead of me and crosses in front of me and tangles both of us up in his leash.  The really bad part of this is that we’re supposed to be getting re-certified as a team this week, and what they measure is how well you work as a team – and right now, we aren’t!

This, I think, is the real pain in the butt about EDS – the unpredictability of injuries, the severity of random injuries, and the way it interferes in your life.  It happens, you can’t avoid it, you can’t plan for it, and man does it interrupt things you DO have planned!

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