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Jul. 2nd, 2020 06:29 pm![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
the_rckI'm feeling cranky as hell today and kind of want to scream at the entire medical profession. When a doctor suggests 'lifestyle changes' and I say, "I have barriers x, y, and z. How do I address them?" that is, in fact, still me needing medical help. I wouldn't bring things up as barriers if they weren't, in actual fact, problems I don't know how to solve. I know that my problems don't fit any neat boxes and that having the usual solutions be unworkable is frustrating. I know that. I really do.
But the usual solutions being unworkable means I need more help not less. I suppose that the real answer is that my doctors aren't going to tell me that my problems could be solved by having twice the income we do, and I'm pretty sure that that's the only effective fix.
For example, I have an electric can opener. It does not, in fact, make canned food easier to access. Opening cans isn't the problem. My issue is that taking one off the shelf hurts enough that I'll drop it. Carrying it and draining it are worse. We don't have any storage options options for cans (or dishes or any additional appliances you might suggest) that don't require either unfolding a stepstool and climbing it (without falling!) or crouching and then standing again. Our kitchen is small. Our house is small. We can't afford to move; we'll probably never be able to afford to move. We definitely can't afford to hire help.
I know that it's easier to blame me than it is to admit that a lot of problems like mine could be solved with vast amounts of money that aren't available and aren't likely to become so. I just... I'm making the choices that will keep me alive for the next week, for the next month, for the next year. Surviving a decade is irrelevant if I don't make it to those closer time markers. If the choice is not having something from now to the day I die versus losing access to it at some point in the future, I'm not convinced that losing it now makes any [expletives deleted] sense.
Also, the choices necessary for the things I prioritize aren't necessarily the same as the choices for prolonging my life. My only really long term goal is, sadly, likely to be served better by me not living all that long. I adamantly don't want Cordelia to have to give up anything in order to cook for me, bathe me, dress me, etc.
I can see my need for someone to do all of that on the horizon. It's not this year, but it could be as soon as next year. It will certainly arrive within a decade. I already can't manage things like sweeping and cooking most of the time. My legs work better than my hands, and I'm hoping they'll continue to. Our house can't be made accessible without being razed and rebuilt. We can't afford to relocate anywhere local enough for me to still have bus access.
When I say I have anxiety about going outside, I mean that I worry about things on the list below. All of these are things that have been problems more than once and are fairly likely to happen again.
1) prolonged hypervigilance exhausting me so that I can't do anything for several hours or days after
2) Whether the stress and exhaustion will cause a migraine. The likelihood increases the longer I'm out and the more different things I have to deal with while I'm out.
3) Whether I'll fall or roll my ankle. I fall 10x as often when outside the house as opposed to inside. The likelihood of falls when I'm out has probably gone up, but this is based on when I was 30. Rolling an ankle happens maybe 50% of the time but, unless it results in lasting injury (more than half an hour), I don't register it as a problem.
4) Whether I'll have ankle, knee, hip, achilles tendon issues after walking outside. Short term issues happen most of the time. Longer term issues (minimum 6 weeks recovery) happen about 4x a year.
5) Whether or not I'll have breathing issues. Heat (over 75F) and cold (under 40F) are both issues. Sometimes. Unpredictably so.
6) Needing to cross streets. I can't track movement well, visually speaking, so crossing streets is risky. If I can see a moving car, I have to assume that it's near enough and/or moving fast enough to make crossing unsafe.
7) Misjudging curb height, the length of my stride, how far I need to lift my foot to clear a crack or a branch, where my foot will land and if the surface is even.
8) How much additional risk there is due to ice, snow, and/or mud. This includes knowing that some sidewalks between me and the outbound bus belong to the railroad and are never, ever shoveled.
9) Getting jostled causing a fall, making me drop something (loss or damage), or otherwise causing issues. People in close proximity are a danger. Not malice but carelessness. Other people don't pay attention, so I *have* to (which loops back to the hypervigilance).
10) The further I go from home, the more difficult it will be to get home if I injure or exhaust myself.
11) The further I go from a known bus stop, the more difficult it will be to get home if I injure or exhaust myself.
12) My phone has proven unreliable for finding bus stops.
13) My stamina is unpredictable.
14) My need to access a toilet abruptly becoming urgent.
15) Planning my route to include knowing where I can rest (if walking) and being reasonably certain I can walk to a safe place if the bus fails to come.
16) If I need assistance from family or friends, I may have to wait several hours.
17) How much food and water will I need? Where can I refill on water if I need to? My water bottle is good for about an hour of walking in pleasant weather before I have to refill it. Temperatures over 70F mean needing more. In terms of food, I lean on nuts, granola bars, dried fruit, and chocolate because they won't go bad in destructive ways when I forget them for weeks. When I start to get shaky, I will *need* food, and most places on my routes aren't within walking distance of places where I can get food (that's safe for me to eat).
18) If I go out, will I have enough physical and mental energy left to take care of myself when I get home? Will there be anyone around to help? (Now that Cordelia can do things like prepare her own food and track her own medications, this is less of a concern, but I still know that I may not be able to prepare anything for myself or to change my clothes or to wash, etc. That's the price.)
19) Friends and family say they're willing to help with transportation emergencies, but this means once or twice a year for most people and usually doesn't include helping when I have gone out without it being a mutually recognized necessity. 'Went for a walk and misjudged' is not a reason most people will accept as a frequent thing. Not even Scott.
20) Have I checked for bus service alerts (short term detours sometimes with no notice due to accidents, fallen trees, water mains breaking, stalled trains, broken down buses) and route changes (permanent or measured in weeks)? I've had problems with both types of change. The bus company only marks closed stops physically if the closure last more than a day or so.
21) Do I have all of my medications with me? This includes the ones I hope to be home before needing take.
22) Do I have my phone (including charger and cord), bus pass, emergency bus fare (for when I forget my pass), wallet, etc.?
23) Are there sidewalks along my route? If not, is there any safe place to walk?
24) If I need to cross streets, where are the safe places for me to do it and how much additional time and walking will be required to use them? A bus stop 60 ft from my destination is useless if it's on the other side of five lanes of traffic and 10 minutes from a safe crosswalk. (Yes, this is a real example.)
25) Are plans in place for me not getting home at the time I expect? That is, are we expecting a repair tech or a visitor? Is the cleaning lady due? She will panic if I don't leave her a note. (Being home when Cordelia gets home isn't so much a concern now, but she will be cranky with me if I'm not there and haven't told her exactly where I'll be.)
26) Is it Art Fair? Are there other big events that will make my usual routes not work? Construction? Some temporary detours close half a dozen (or more!) stops. Longer lasting detours may move stops without posting anything at the old stop to say where to go.
27) Where is the bus stop I need for catching the bus home? (This is often harder than it should be to figure out.) Is the bus a loop or a shuttle? Does it run at different intervals at different times of day or on weekends? Are there variant routes? If so, which ones go to my destination? Where will I end up if I get on the wrong one and how do I get home from there?
28) Is there a shelter or a bench or anything of the sort near the stop I need for getting home? I can't stand for very long, and me pacing back and forth over the same 10 feet freaks people out. I also want to know if there's shade, but sunburn and/or heat exhaustion won't stop me from getting home.
29) How long between buses? I need to allow more time for early arrival of a once a day bus than a once an hour and more for a once every hour than a once every half hour. If it's once every 15 minutes, I don't worry about timing.
30) Is the transfer I'm hoping to make from one bus to another viable at the time of day when I need it? This has bitten me multiple times in the last 12 months.
31) The bus website is wildly inaccurate for trips involving transfers and may forget certain routes and/or stops exist (or they may actually be gone, who knows until you try?). It also will claim no possibility of getting to a place from downtown if it's only serviced on the return leg of the route. This has also bitten me multiple times in the last year. Specifically, the website will say that there's no stop at Skyline if the bus goes there *after* the nearby park and ride lot because the lot is the end of the route. One has to know to also ask if one can get to Skyline from the park and ride lot. There are some times of day when the Skyline stop is first. Then there are the weird times when the planner will say to get off at, say, the Farmer's Market and walk a block to transfer when both buses will be at the Transit Center 2-3 minutes later on and be much less distant from each other. Except that, sometimes, one of those buses doesn't go to the Transit Center all of the time, just at certain times of day.
Most of the stuff under the cut is me venting and me tracking this stuff for my own use. Somehow, I don't think any of these issues can be helped by exposure therapy.
But the usual solutions being unworkable means I need more help not less. I suppose that the real answer is that my doctors aren't going to tell me that my problems could be solved by having twice the income we do, and I'm pretty sure that that's the only effective fix.
For example, I have an electric can opener. It does not, in fact, make canned food easier to access. Opening cans isn't the problem. My issue is that taking one off the shelf hurts enough that I'll drop it. Carrying it and draining it are worse. We don't have any storage options options for cans (or dishes or any additional appliances you might suggest) that don't require either unfolding a stepstool and climbing it (without falling!) or crouching and then standing again. Our kitchen is small. Our house is small. We can't afford to move; we'll probably never be able to afford to move. We definitely can't afford to hire help.
I know that it's easier to blame me than it is to admit that a lot of problems like mine could be solved with vast amounts of money that aren't available and aren't likely to become so. I just... I'm making the choices that will keep me alive for the next week, for the next month, for the next year. Surviving a decade is irrelevant if I don't make it to those closer time markers. If the choice is not having something from now to the day I die versus losing access to it at some point in the future, I'm not convinced that losing it now makes any [expletives deleted] sense.
Also, the choices necessary for the things I prioritize aren't necessarily the same as the choices for prolonging my life. My only really long term goal is, sadly, likely to be served better by me not living all that long. I adamantly don't want Cordelia to have to give up anything in order to cook for me, bathe me, dress me, etc.
I can see my need for someone to do all of that on the horizon. It's not this year, but it could be as soon as next year. It will certainly arrive within a decade. I already can't manage things like sweeping and cooking most of the time. My legs work better than my hands, and I'm hoping they'll continue to. Our house can't be made accessible without being razed and rebuilt. We can't afford to relocate anywhere local enough for me to still have bus access.
When I say I have anxiety about going outside, I mean that I worry about things on the list below. All of these are things that have been problems more than once and are fairly likely to happen again.
1) prolonged hypervigilance exhausting me so that I can't do anything for several hours or days after
2) Whether the stress and exhaustion will cause a migraine. The likelihood increases the longer I'm out and the more different things I have to deal with while I'm out.
3) Whether I'll fall or roll my ankle. I fall 10x as often when outside the house as opposed to inside. The likelihood of falls when I'm out has probably gone up, but this is based on when I was 30. Rolling an ankle happens maybe 50% of the time but, unless it results in lasting injury (more than half an hour), I don't register it as a problem.
4) Whether I'll have ankle, knee, hip, achilles tendon issues after walking outside. Short term issues happen most of the time. Longer term issues (minimum 6 weeks recovery) happen about 4x a year.
5) Whether or not I'll have breathing issues. Heat (over 75F) and cold (under 40F) are both issues. Sometimes. Unpredictably so.
6) Needing to cross streets. I can't track movement well, visually speaking, so crossing streets is risky. If I can see a moving car, I have to assume that it's near enough and/or moving fast enough to make crossing unsafe.
7) Misjudging curb height, the length of my stride, how far I need to lift my foot to clear a crack or a branch, where my foot will land and if the surface is even.
8) How much additional risk there is due to ice, snow, and/or mud. This includes knowing that some sidewalks between me and the outbound bus belong to the railroad and are never, ever shoveled.
9) Getting jostled causing a fall, making me drop something (loss or damage), or otherwise causing issues. People in close proximity are a danger. Not malice but carelessness. Other people don't pay attention, so I *have* to (which loops back to the hypervigilance).
10) The further I go from home, the more difficult it will be to get home if I injure or exhaust myself.
11) The further I go from a known bus stop, the more difficult it will be to get home if I injure or exhaust myself.
12) My phone has proven unreliable for finding bus stops.
13) My stamina is unpredictable.
14) My need to access a toilet abruptly becoming urgent.
15) Planning my route to include knowing where I can rest (if walking) and being reasonably certain I can walk to a safe place if the bus fails to come.
16) If I need assistance from family or friends, I may have to wait several hours.
17) How much food and water will I need? Where can I refill on water if I need to? My water bottle is good for about an hour of walking in pleasant weather before I have to refill it. Temperatures over 70F mean needing more. In terms of food, I lean on nuts, granola bars, dried fruit, and chocolate because they won't go bad in destructive ways when I forget them for weeks. When I start to get shaky, I will *need* food, and most places on my routes aren't within walking distance of places where I can get food (that's safe for me to eat).
18) If I go out, will I have enough physical and mental energy left to take care of myself when I get home? Will there be anyone around to help? (Now that Cordelia can do things like prepare her own food and track her own medications, this is less of a concern, but I still know that I may not be able to prepare anything for myself or to change my clothes or to wash, etc. That's the price.)
19) Friends and family say they're willing to help with transportation emergencies, but this means once or twice a year for most people and usually doesn't include helping when I have gone out without it being a mutually recognized necessity. 'Went for a walk and misjudged' is not a reason most people will accept as a frequent thing. Not even Scott.
20) Have I checked for bus service alerts (short term detours sometimes with no notice due to accidents, fallen trees, water mains breaking, stalled trains, broken down buses) and route changes (permanent or measured in weeks)? I've had problems with both types of change. The bus company only marks closed stops physically if the closure last more than a day or so.
21) Do I have all of my medications with me? This includes the ones I hope to be home before needing take.
22) Do I have my phone (including charger and cord), bus pass, emergency bus fare (for when I forget my pass), wallet, etc.?
23) Are there sidewalks along my route? If not, is there any safe place to walk?
24) If I need to cross streets, where are the safe places for me to do it and how much additional time and walking will be required to use them? A bus stop 60 ft from my destination is useless if it's on the other side of five lanes of traffic and 10 minutes from a safe crosswalk. (Yes, this is a real example.)
25) Are plans in place for me not getting home at the time I expect? That is, are we expecting a repair tech or a visitor? Is the cleaning lady due? She will panic if I don't leave her a note. (Being home when Cordelia gets home isn't so much a concern now, but she will be cranky with me if I'm not there and haven't told her exactly where I'll be.)
26) Is it Art Fair? Are there other big events that will make my usual routes not work? Construction? Some temporary detours close half a dozen (or more!) stops. Longer lasting detours may move stops without posting anything at the old stop to say where to go.
27) Where is the bus stop I need for catching the bus home? (This is often harder than it should be to figure out.) Is the bus a loop or a shuttle? Does it run at different intervals at different times of day or on weekends? Are there variant routes? If so, which ones go to my destination? Where will I end up if I get on the wrong one and how do I get home from there?
28) Is there a shelter or a bench or anything of the sort near the stop I need for getting home? I can't stand for very long, and me pacing back and forth over the same 10 feet freaks people out. I also want to know if there's shade, but sunburn and/or heat exhaustion won't stop me from getting home.
29) How long between buses? I need to allow more time for early arrival of a once a day bus than a once an hour and more for a once every hour than a once every half hour. If it's once every 15 minutes, I don't worry about timing.
30) Is the transfer I'm hoping to make from one bus to another viable at the time of day when I need it? This has bitten me multiple times in the last 12 months.
31) The bus website is wildly inaccurate for trips involving transfers and may forget certain routes and/or stops exist (or they may actually be gone, who knows until you try?). It also will claim no possibility of getting to a place from downtown if it's only serviced on the return leg of the route. This has also bitten me multiple times in the last year. Specifically, the website will say that there's no stop at Skyline if the bus goes there *after* the nearby park and ride lot because the lot is the end of the route. One has to know to also ask if one can get to Skyline from the park and ride lot. There are some times of day when the Skyline stop is first. Then there are the weird times when the planner will say to get off at, say, the Farmer's Market and walk a block to transfer when both buses will be at the Transit Center 2-3 minutes later on and be much less distant from each other. Except that, sometimes, one of those buses doesn't go to the Transit Center all of the time, just at certain times of day.
Most of the stuff under the cut is me venting and me tracking this stuff for my own use. Somehow, I don't think any of these issues can be helped by exposure therapy.
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Date: 2020-07-02 11:50 pm (UTC)no subject
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Date: 2020-07-03 11:35 pm (UTC)