My OI symptoms were horrendous today and I've had multiple close calls (complete black outs without the faint). Still, I managed to go to the local hardware store to buy supplies for the bottlejack printing press I'm building (a work in progress).
While standing in the small, local hardware store looking for stuff, someone shouted "Gail!" across the aisles. It was one of those moments, you know the ones where it is taking every bit of mental and physical stamina you have not to scream with the dizzy, sick, fluy, feeling?
Still, I was happy to see this person.
He asked if I still liked to paddle (he was also a wilderness guide for a sister organization to the one I worked for) and was talking about how him and his wife had been going out with friends to paddle lately at a local rapid (whitewater canoeing).
He asked if I wanted to come out to the rapids Tues. night.
Well, what a strange moment right? I mean I barely leave the house, spend almost all my time in bed or laying down (I figured it out to 1-2 hours a day where I'm not horizontal) - and yet emotionally, I'm happy that I'm being invited somewhere, happy to see an old friend/acquaintance. He obviously doesn't have a clue how sick I am.... how would he... I live in my bedroom.
I said it might be fun to come watch if nothing else, trying to be sociable. We talked a bit about paddling, and the printing press I was building, and then we headed off to our own projects (and me home to bed).
I mean of course I want to go paddling!!...it's not a matter of intention or desire, in fact I'm dying to go whitewater paddling...how cool would that be? I'm even laying here contemplating what might happen if I was well enough to even get to the rapid (maybe a 1/2 hr drive).
If I managed to get there would I get in a boat? My arms are very very weak not to mention the things that happen after I exert myself in any way (severe immune symptoms, muscle tremors and twitches, dizziness - although generally those symptoms bombard me 24-48hrs later). How many days, months might I crash/relapse if I tried whitewater paddling? And would it be worth it????? I haven't even been able to manage a meal out in months...I have trouble lifting heavy pots, standing, existing, really.
It was a pinhole peak into what I might have if I weren't sick....I'm very lucky to have a few friends left, but ultimately I have a very limited life. If I were healthy I'd exercise, have a job/carreer, go out and socialize, join stuff...maybe a book club. I might date, I'd always wanted to foster or adopt, I'd ski in the winter, in the summer I'd paddle, maybe rock climb again. Oh the possibilities (don't go there right?). But I can't dwell on this...I need to not dwell on this!!!
This is the life I have; a sick, limited life.
How do I not hate my life? I feel like such an outcast, such a failure...I want to blame myself. That was what I did early on, for years even...that and push myself....but I'm past that phase. I accept now that I never wanted this, I couldn't have even imagined something this awful if I'd tried.
People look at me: I don't look sick, they probably think I'm exaggerating or somehow weak in character and/or stamina....many have said as much. And yet, despite anything I or anyone else believes, I'm very ill. I wake up ill every day no mater what I tell myself, and unless I am fastidious about pacing, I get worse. If I choose to put a smile on I'm ill with a smile on...If I choose to be angry and bitter, I'm still ill (and angry and bitter).
As Toni Bernard writes, whatever problems we have, this is just our life, right? This is just my life.
(Here's a link to her post from 11 years sick - I found it inspiring: http://www.psychologytoday.com/blog/turning-straw-gold/201205/11-tips-11-years-sick)
In order to survive emotionally, I need to not crash too often as "not" crashed is bad enough. I need to live in my bubble....that is what disability is, I guess...the more disabled, the smaller the bubble.
So instead of paddling I'll continue to build my press, one step forward every day. I'll try to forget what might be or could have been if...if....
....if only - like the fact that I could have been going paddling Tues. night.
And thanks to anyone who made it through this rant (sorry)
Here's a print I did (block print) inspired by reading Watership Down this week...although they are hares, not rabbits.
This is a great print you made, upnorth. Fascinating work.
ReplyDeleteI get what you are saying that's for sure. We look healthy....we are not. Even when we go out, there are consequences...and people dont' understand. Now that the dr says the Lyme is gone no one can understand why my symptoms are so STILL here. I can't either. You are so right, no one in their right mind would want to be sick like you are. It must be so hard to be missing what you love most~
Renee, I expect it would be even worse if you knew the culprit was gone...then why do you still feel sick? But obviously you're not well yet. Sometimes we have to let go of the questions I guess and just do our best to live the reality. Not that I do it well....how nice would it be to at least know what was causing this. I hope soon you start to feel better....it's coming right?
Deletefirst of all, upnorth, your printmaking is absolutely beautiful, and "professional"! i don't know your art background but as a professional artist myself, who was majored into printmaking in college, i am impressed by your work!
ReplyDeleteabout the rest of your post, oh boy, i cannot recall how many time i was caught into similar situations. i admire the fact you did not tell him that you were sick, but if it were me, i would (always) tell. frustrated as i used to be, i know perfectly how you feel! i lost friendship, pretty much all of them. living in solitary for years, i found it was much easier for me to handle loneliness, than handling people's judgment.
however, as my situation gets better, i am more and more confident when talking about my illness. "modern superstition" can be the word that shut them up in they first attempt of trying to put the "depression" label on me. lol
last but not the least, hope you feel better soon.
Thanks for the complement on my art Yun Yi, it's one thing I've spent more time on since getting ill -art, esp. printing but also a little watercolour painting here and there. Do you do any art still?
ReplyDeleteAs to the disclosure piece, this guy used to know that I was sick, but he has no reason to know that I still am as I'm rarely out in the world anymore and standing dizzy in the hardware store wasn't the time and place to get into it if you know what I mean. I think it's good that you are truthful more often able to be truthful with people....sometimes I'd just rather not face the stigma.
welcome!
Deletei don't do art works as often now. mostly because i enjoy so many others things. i only paint once a long while, when i feel absolutely "painting mood". and i almost never do print work after i left art school, which is decades ago;-)
i understand about issue of "disclosure". i too, sometime better just avoid situation. i found, when my health gets better, i am more calm to "confront" this issue. but anyway, trying to make myself happy has been number one concern after all these years frustration.
What a beautiful print!
ReplyDeleteI understand completely about how you are feeling. All those 'what ifs' we have to weigh up about doing something enjoyable (or even mundane!) while other people can just do it without thinking; it is very frustrating.
But, you aren't limited. You could go and watch them paddle or would that make you feel disappointed in yourself that you can't at the moment? You'll be out socialising which I feel is always beneficial.
It's annoying place to be in, isn't it?
Thanks for your understanding Forgetful Girl...yes, it's hard not to think of all the what ifs.
DeleteAs for going just to socialize, it really depends as often I'm not well enough for any kind of outings at all without paying for days or weeks. Also, for some reason driving any length causes major crash with neurological symptoms.
Agreed with above. Gorgeous print! You are so talented! :)
ReplyDeleteI sometimes think the hardest part of everything (you know, harder than feeling absolutely sick and all heh) is learning to say no to these opportunities. Learning that has been the hardest thing ever for me and I think it takes a tremendous amount of will power and control that no healthy person can possibly understand. I ache inside to do all these things I see the people around me doing and I want to just get up and go just like them. Anyway, it's so great that you've found something that makes you happy but doesn't require loads of energy (and the final result looks so great!).
Hugs!
You are right, Dolce Vita, the saying no is SOOOOO hard. I used to be the type of person who was usually "up for whatever"esp. in the adventure realm too, so it's almost like I've had to change my personality. Thanks for the complement on my print too, there will be a few more I'll post here.
DeleteHi Upnorth,
ReplyDeleteYou can rant anytime as far as I'm concerned. Sometimes when my husband is away, and no one healthy is around me, I can shift into a mood in which it's almost as if everyone lives the life I live (bed bed bed, chair, short walks, chair, bed bed bed). I loved your wood cut, print. I have no understanding of the process but wonderful that you have art work. It's lovely, the hares' expressions and sitting in high grass, so life like. You are entitlted to lots of rants and especially when you come face to face with something you can no longer do. I've travelled very little, such regrets which I mull over a lot, a lot, and when coming into contact thru email even with someone I know who has just returned from Italy I'm beside myself with envy, jealousy, anger. Italy !!!! (I'd be estatic with travelling two counties away !! I like your term 'bubble,' I use 'little life.' Some time if you feel like it you'll have to tellus what a bottlejack printing press is. from Leah
Leah, I know what you mean about feeling like everyone lives this quiet life...I get lulled into that too sometimes, esp. when I haven't been out much and my social life is via internet. Strangely, it's when I'm doing a bit better that I start to notice (and hurt about) everything I'm missing and/or can't do....that and when my friends have milestones I will never have.
DeleteAs for travel, have you been sick your whole life, or did you have well years where you were healthy and could do more like travel?
I was thinking when I'm done the bottle jack press I'll post a photo on here as it's been such a huge project in and of itself. (Basically it's a printing press built from a bottlejack - they type you'd use with a car -much cheaper than buying a press but as I'm learning, tough for a weak person to build....I'm having to rope in lots of volunteer helpers).
Upnorth,
ReplyDeleteMy heart really breaks for you here. I've posted once before on your blog - I'm the fellow wilderness instructor/rock climber/runner/skier, etc, so forth. But unlike you, I am largely recovered after three years of illness (thanks to slow increments of exercise and a high dose of the drug Cymbalta...I also had an acute onset of mono). For some reason this makes reading your post even more difficult, because I can feel in the pit of my stomach what it is like to run into those old adventure friends. I remember getting emails from my old buddies suggesting that we all meet up in Utah to climb at Red Rocks, and just ignoring it because how could I possibly explain? Or worse, having my friends come to climb in Yosemite (I live nearby) and having to make up the lamest excuses for why I couldn't join them. During my second year of illness I went on a few snowboarding trips out of peer pressure and usually felt like absolute death the next day (and I was sharing a ski cabin with friends, so had to dodge awkward questions).
I think CFS is hard on everyone, but it seems to have a special effect on us adventurous types. Maybe it's because so much of our identities are tied up in the forests and mountains and in connecting with nature by shouldering our packs and heading off into the woods.
And I cannot even tell you how grateful I am that this is no longer lost to me. I have actually fallen on my knees in a pine forest and thanked every bit of it. Every pine needle, the breath of wind, the blue sky and trickling brook. This is my god. When I go for runs it is like each step is a gift. And rock climbing, well. I sometimes think I don't even deserve what has been given back to me.
I promise that the next mountain I climb, I'll leave something up there for you. I'll think about you when I'm building a fire or setting up an anchor for a climb. I promise I'll put all my prayers into the wind for you.
And here I am, a complete stranger. I hope you'll accept these small wishes I can give you.
J
J,
ReplyDeleteyour words are so empathetic and kind I was tearing reading them. To hear from someone who understands the kind of life I used to lead and what a gaping hole loosing it has left me. And you are right, some of it is the identity. I've only ever met one other person who was a wilderness guide (and for a while a professional athlete) who also got this. She too, was able to recover in about 3 years....
I'm so happy that you are doing better. That alone gives me hope.
Despite my terrible year, I'm contemplating "getting out" this summer despite consequences - And if it happens, it will be more of a camping than travel trip. Fingers crossed. Thanks again for your words.