Do what you can with the time you have.
October 9, 2015 9:40 AM Subscribe
as someone who is completely able-bodied and merely aging (in comparison to the twentysomethings that race in my category) I found this extremely impressive, especially in context of how freaking physically challenging cyclocross racing is. I mentally struggle with being a mid to back of the pack Category 3 racer, and this was a serious example for me of how to check my privilege and celebrate my abilities, such as they are.
posted by lonefrontranger at 10:29 AM on October 9, 2015 [2 favorites]
posted by lonefrontranger at 10:29 AM on October 9, 2015 [2 favorites]
I really liked this article and I'm glad this writer is living life to her own terms.
I have the same kidney disease as the writer, and it's pretty common but few people have heard of it. Everyone in my family with PKD has been either dead or on dialysis by age 42, and I'd be lying if I said I didn't think about that every day. My grandfather died at 36, but in the pictures, he looks 65. It's weird.
Like the writer, I get achey and sluggish, and a little foggy headed. I'm tired a lot. I have to calibrate my days to my energy levels. My line of work takes a lot of recall and attention to detail and I find myself every now and then having these vaguely Flowers for Algernon sorts of moments where I struggle to grasp things the way I used to.
But other than that, life is pretty OK. Although I'm still years out from things being bad enough to need a transplant, my kidneys are to a point where it's unwise to cycle or do any heavy athletics due to the potential for cysts to burst (which creates horror-film amounts of blood but are generally not super painful), and my kidneys are so gigantic that it's hard to breathe! But I still love walking and hiking and hope to do more of that. I worry that I should be more worried about the future, but then I feel a lot more normal when I don't worry, so I stop worrying altogether.
It's great she's giving a voice to her experience. I'm also a fan of Kriste Lewis, who also has PKD and as a 40-year-old mother of two became a cheerleader for the New Orleans Saints.
posted by mochapickle at 11:01 AM on October 9, 2015 [22 favorites]
I have the same kidney disease as the writer, and it's pretty common but few people have heard of it. Everyone in my family with PKD has been either dead or on dialysis by age 42, and I'd be lying if I said I didn't think about that every day. My grandfather died at 36, but in the pictures, he looks 65. It's weird.
Like the writer, I get achey and sluggish, and a little foggy headed. I'm tired a lot. I have to calibrate my days to my energy levels. My line of work takes a lot of recall and attention to detail and I find myself every now and then having these vaguely Flowers for Algernon sorts of moments where I struggle to grasp things the way I used to.
But other than that, life is pretty OK. Although I'm still years out from things being bad enough to need a transplant, my kidneys are to a point where it's unwise to cycle or do any heavy athletics due to the potential for cysts to burst (which creates horror-film amounts of blood but are generally not super painful), and my kidneys are so gigantic that it's hard to breathe! But I still love walking and hiking and hope to do more of that. I worry that I should be more worried about the future, but then I feel a lot more normal when I don't worry, so I stop worrying altogether.
It's great she's giving a voice to her experience. I'm also a fan of Kriste Lewis, who also has PKD and as a 40-year-old mother of two became a cheerleader for the New Orleans Saints.
posted by mochapickle at 11:01 AM on October 9, 2015 [22 favorites]
Wow, the side-by-side comparison of the kidneys says far more than words could say.
posted by fiercecupcake at 11:41 AM on October 9, 2015 [2 favorites]
posted by fiercecupcake at 11:41 AM on October 9, 2015 [2 favorites]
I have rheumatoid arthritis (or something like it, though my doctors can't say quite what), but it's still pretty mild most of the time, and I can go with months with my symptoms totally under control. I'm running my first 5K on Halloween, and for about six months now I've been steadily working to get my time below 30 minutes; I was getting really, really close! A couple weeks ago my joints started rebelling, and my last run I struggled to make it in just over 40. I'd planned to go running tonight, but this morning I could barely get out of bed.
It's a little heartbreaking. I didn't even want to start running, but my wife talked me into going with her, and now I've come to really love it. There's even a tiny sliver of me that I identifies as "a runner," which is a strange feeling, since my experience with my body and physical activity has been overwhelmingly negative from childhood until very recently. I was really looking forward to showing up on Halloween morning and crushing it (by my own standard, anyway; sitting right in the middle would be a huge accomplishment for me). Now I have to wonder if I'll finish at all.
I'm trying to recalibrate my expectations from "my best time yet" to "the best time I can today," but it's hard when up until now I've been doing so well. It casts my future in a really stark light. I hope on the day of I have the same experience as author where I realize suddenly that I'm both doing well and having fun.
posted by WCWedin at 11:51 AM on October 9, 2015 [16 favorites]
It's a little heartbreaking. I didn't even want to start running, but my wife talked me into going with her, and now I've come to really love it. There's even a tiny sliver of me that I identifies as "a runner," which is a strange feeling, since my experience with my body and physical activity has been overwhelmingly negative from childhood until very recently. I was really looking forward to showing up on Halloween morning and crushing it (by my own standard, anyway; sitting right in the middle would be a huge accomplishment for me). Now I have to wonder if I'll finish at all.
I'm trying to recalibrate my expectations from "my best time yet" to "the best time I can today," but it's hard when up until now I've been doing so well. It casts my future in a really stark light. I hope on the day of I have the same experience as author where I realize suddenly that I'm both doing well and having fun.
posted by WCWedin at 11:51 AM on October 9, 2015 [16 favorites]
Wow, the side-by-side comparison of the kidneys says far more than words could say.
They can weigh up to 30 pounds! Normal kidneys are about 8 oz.
When they took my dad's out, they were the size of rugby balls. The doctors actually brought one out to the waiting room, warm, in a translucent blue plastic bag.
That's another thing about the invisible illness, when the kidneys get big, which happens to about half of us with PKD. My brother's kidneys were so large, everyone assumed he had a beer gut and liked to party.
I'm a lady, so everyone assumes I am pregnant. Looking like you are bringing life into the world has a way of making people quite assuredly assume you are fantastically, superlatively healthy and Earth-mothery instead of invisibly, incurably, and progressively ill. I get asked about what people assume is my pregnancy almost daily, and watching people's faces turn from joy and friendly curiosity to that weird 15-degree Head Tilt of Pity when I gently explain it's kidney disease never gets easier.
Sometimes it's easier to go along with it and say it's a girl, due in four months, my first! I sometimes say it's twins, which is somewhat technically true.
posted by mochapickle at 12:04 PM on October 9, 2015 [25 favorites]
They can weigh up to 30 pounds! Normal kidneys are about 8 oz.
When they took my dad's out, they were the size of rugby balls. The doctors actually brought one out to the waiting room, warm, in a translucent blue plastic bag.
That's another thing about the invisible illness, when the kidneys get big, which happens to about half of us with PKD. My brother's kidneys were so large, everyone assumed he had a beer gut and liked to party.
I'm a lady, so everyone assumes I am pregnant. Looking like you are bringing life into the world has a way of making people quite assuredly assume you are fantastically, superlatively healthy and Earth-mothery instead of invisibly, incurably, and progressively ill. I get asked about what people assume is my pregnancy almost daily, and watching people's faces turn from joy and friendly curiosity to that weird 15-degree Head Tilt of Pity when I gently explain it's kidney disease never gets easier.
Sometimes it's easier to go along with it and say it's a girl, due in four months, my first! I sometimes say it's twins, which is somewhat technically true.
posted by mochapickle at 12:04 PM on October 9, 2015 [25 favorites]
I have an invisible chronic ailment—I have Chronic Daily Headache, and have had a headache every day of my life for something like 21 years now. The blessing of CDH is that the headache rarely gets as bad as the headaches that people with migraine or cluster headaches get; it's constant, but rarely put-you-in-bed-puking painful. It's also become something I live with pretty well; I've had a very productive life. Flare-ups into more severe pain happen pretty regularly, but follow a predictable pattern that puts me back at baseline in about 3 days.
Except that on July 11, 2014, a flare-up started that lasted over nine months. My neurologist tried everything that had ever worked before, and then tried a bunch of new stuff. If you can name a medication, I've probably taken it. But none of it helped. All sorts of brain scans &c were repeated but nothing new showed up.
Finally, in May, I had my first Botox treatment—31 injections in my forehead, temples, neck and shoulders. It seems to help. At least, I've become pretty functional again, which is great after almost a year when my hours of alertness and productivity had dropped to maybe 3 per day, and even those couldn't be counted on.
Even though I'm somewhat improved (though still not to my pre-flare-up baseline, alas), this has left me with a feeling that I'm on borrowed time. If my headache could change its pattern so dramatically after so many years, how do I ever know that today or tomorrow isn't the start of a new lost year? I've been in a flare-up for 10 days right now. Will it end? When?
This has rearranged my whole life. Was it in the article, or someone up-thread, who said that a condition like that makes you do things now, because you can't count on being able to do them down the road? "I'd like to run a road race someday" turns into, "I'd better start training now, because this might be as good as it ever gets—I might not get the chance if I put it off." I feel that. I feel like any day of my life could be July 11, 2014, again.
I was going to start grad school to be a speech language pathologist in September, and didn't because it was clear I didn't have the energy. For awhile, I thought I'd just defer and start next year. But now I know I'm not going to do that. I'm either going to be well enough a year from now, or I'm not. Even if I'm well enough, is studying to be an SLP how I want to spend my time? What if my first year of grad school is my last good year? Wouldn't I rather spend it meeting other goals, and spending more time with my family, rather than hardly seeing them while I take classes, do clinical hours, and study?
Everyone's time and resources are limited. Mine have always been a little more limited than some other people's because of my CDH. But now they're not only more limited, but untrustworthy. So, for now, the question is something like, "What are the very most important things?" There's a fairly ruthless culling going on. It's sad—I would have been a very good SLP, and I would have liked it—but it's also liberating. It's like having permission to get very, very selfish; do only what matters the most to me; pour the resources I have into some things that I've been letting go for years in favor of things I cared about less that seemed more urgent, or more important. I think this next year is going to be a good one, for all that I'm having to nap every day, and I'm pretty much useless most evenings. In another year, I'll either be at a new, better baseline thanks to the Botox, or I won't, but either way, I think I'll have something solid to show for my time.
posted by not that girl at 12:47 PM on October 9, 2015 [18 favorites]
Except that on July 11, 2014, a flare-up started that lasted over nine months. My neurologist tried everything that had ever worked before, and then tried a bunch of new stuff. If you can name a medication, I've probably taken it. But none of it helped. All sorts of brain scans &c were repeated but nothing new showed up.
Finally, in May, I had my first Botox treatment—31 injections in my forehead, temples, neck and shoulders. It seems to help. At least, I've become pretty functional again, which is great after almost a year when my hours of alertness and productivity had dropped to maybe 3 per day, and even those couldn't be counted on.
Even though I'm somewhat improved (though still not to my pre-flare-up baseline, alas), this has left me with a feeling that I'm on borrowed time. If my headache could change its pattern so dramatically after so many years, how do I ever know that today or tomorrow isn't the start of a new lost year? I've been in a flare-up for 10 days right now. Will it end? When?
This has rearranged my whole life. Was it in the article, or someone up-thread, who said that a condition like that makes you do things now, because you can't count on being able to do them down the road? "I'd like to run a road race someday" turns into, "I'd better start training now, because this might be as good as it ever gets—I might not get the chance if I put it off." I feel that. I feel like any day of my life could be July 11, 2014, again.
I was going to start grad school to be a speech language pathologist in September, and didn't because it was clear I didn't have the energy. For awhile, I thought I'd just defer and start next year. But now I know I'm not going to do that. I'm either going to be well enough a year from now, or I'm not. Even if I'm well enough, is studying to be an SLP how I want to spend my time? What if my first year of grad school is my last good year? Wouldn't I rather spend it meeting other goals, and spending more time with my family, rather than hardly seeing them while I take classes, do clinical hours, and study?
Everyone's time and resources are limited. Mine have always been a little more limited than some other people's because of my CDH. But now they're not only more limited, but untrustworthy. So, for now, the question is something like, "What are the very most important things?" There's a fairly ruthless culling going on. It's sad—I would have been a very good SLP, and I would have liked it—but it's also liberating. It's like having permission to get very, very selfish; do only what matters the most to me; pour the resources I have into some things that I've been letting go for years in favor of things I cared about less that seemed more urgent, or more important. I think this next year is going to be a good one, for all that I'm having to nap every day, and I'm pretty much useless most evenings. In another year, I'll either be at a new, better baseline thanks to the Botox, or I won't, but either way, I think I'll have something solid to show for my time.
posted by not that girl at 12:47 PM on October 9, 2015 [18 favorites]
My wife has an invisible disease. She pushed her physical boundaries on a recent vacation—and paid for it later, but paid gladly. She's never been an athlete, but it's hard for even a mostly-sedentary person to be limited. Spoon theory is just as tough for the patient to accept as it is for others.
posted by infinitewindow at 1:18 PM on October 9, 2015 [9 favorites]
posted by infinitewindow at 1:18 PM on October 9, 2015 [9 favorites]
Had a crying jag today triggered by a lot of things, creeping SAD, my muscles and joints doing that pain thing that might mean a bad week or sliding out of remission, job upheavals, kid issues, and a convo with a fourteen year old girl And her mother about how much longer they should wait for Enbrel to start working on the teen.
Every time I start to fall to shit I panic remission is over and I'm about to lose my mobility again, this time forever. And so far it's been one damn fixable thing or another. Hoping this months fresh hell is another duct tape solution and not a "start looking for a good disability lawyer" thing.
Thanks for posting. And all for sharing.
posted by tilde at 1:23 PM on October 9, 2015 [7 favorites]
Every time I start to fall to shit I panic remission is over and I'm about to lose my mobility again, this time forever. And so far it's been one damn fixable thing or another. Hoping this months fresh hell is another duct tape solution and not a "start looking for a good disability lawyer" thing.
Thanks for posting. And all for sharing.
posted by tilde at 1:23 PM on October 9, 2015 [7 favorites]
I'm in the process of coming to terms with just how limiting my invisible illnesses are. Now in my mid 30s, I'm being forced to realize that, while I was able to mostly ignore them and shrug off a bad day or two every few months so long as I took my meds, I now have to deal with a body that will always get in the way of the things I want to do. Nothing I have will kill me, but it feels more and more like I have no life left beyond being sick, some days.
I can't take the research trip to Italy I wanted to for my PhD work, after the month in London took three months to recover from.
I can't reliably make meetings with my advisor, who is now really pissed at me in a very affable, British way that hurts my soul.
I can't go to conferences reliably, because I simply may not have the energy (let alone TIME and MONEY) to travel to them, or even be able to travel on my own any more.
I can't manage the research schedule I want because my hands keep giving out on me, and voice dictation doesn't get the same amount of work done before my voice gives out too.
I can't deal with seeing others in my cohort finish, do well, succeed, and prosper when I'm stuck with three millstones around my neck. They do well, succeed, and seem to have their shit together, while I'm the outsider because I miss meetings due to being sick.
... I can't just go lay down, go to sleep, and sleep every day for the rest of my life. That's all I want to do, just stop taking the things that force me awake, take more painkillers so things stop hurting, and sleep. But I can't do that. I can't stop fighting to be myself despite what my body is doing to me.
posted by strixus at 2:37 PM on October 9, 2015 [19 favorites]
I can't take the research trip to Italy I wanted to for my PhD work, after the month in London took three months to recover from.
I can't reliably make meetings with my advisor, who is now really pissed at me in a very affable, British way that hurts my soul.
I can't go to conferences reliably, because I simply may not have the energy (let alone TIME and MONEY) to travel to them, or even be able to travel on my own any more.
I can't manage the research schedule I want because my hands keep giving out on me, and voice dictation doesn't get the same amount of work done before my voice gives out too.
I can't deal with seeing others in my cohort finish, do well, succeed, and prosper when I'm stuck with three millstones around my neck. They do well, succeed, and seem to have their shit together, while I'm the outsider because I miss meetings due to being sick.
... I can't just go lay down, go to sleep, and sleep every day for the rest of my life. That's all I want to do, just stop taking the things that force me awake, take more painkillers so things stop hurting, and sleep. But I can't do that. I can't stop fighting to be myself despite what my body is doing to me.
posted by strixus at 2:37 PM on October 9, 2015 [19 favorites]
Thank all of you for sharing your stories of struggle with all of us. It certainly is a reminder of how fortunate we are who do not experience one of these invisible sicknesses. We really do not know the challenges many of the people we are in contact with have to face daily and need reminded on occasion.
posted by nofundy at 4:21 PM on October 10, 2015 [1 favorite]
posted by nofundy at 4:21 PM on October 10, 2015 [1 favorite]
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