the_rck | Entries tagged with disability

My leg is very slowly getting better. It still feels badly bruised, and even light touches hurt a lot, but it doesn't look bruised. When I hurt my ankle, back in May, it also felt (and still does now) bruised but never showed it. I have no idea what's going on with it all.

I can see some swelling but not a lot. I've been using an Ace bandage, off and on. That helps, off and on. My main conclusion is that knees are awkward. I can't wrap the knee proper or anything above it because that will just slide down the moment I stand up. I have this problem with braces/wraps intended for knees, too. I bought some with the idea that they'd help with stairs, and they kind of do, but I have to reposition them about three times for a single trip to the basement. At least, I do if I want them to be useful.

Scott has done the laundry this weekend because neither of us want me to try the stairs yet.

( Meanderings about library books and story structure )

This posting regularly thing is harder than I remember it being. Some of that is that my sense of time is kind of screwy these days; some of that is being out of the habit; some of that is simply not having much going on.

I've been trying to tidy up my reading/watching logs for posting, but while my lists are (probably) complete, I simply don't recognize many of the titles and need to look for blurbs to remind myself which story the title goes with. I recognize the stories most of the time, but the library catalogue blurbs are often kind of terrible and/or misleading.

Next week, Scott will be going back to 2nd shift. That means he'll work 3 p.m. to 11 p.m. instead of 7 a.m. to 3 p.m. This will put the two of us back on more or less the same schedule. I'm not sure how that will go. I'm definitely better off on several fronts (digestive issues are most immediately obvious that way) when I stay on that schedule, but I'm also out of practice at going to bed when Scott does.

Also, my body really, really wants the day to be 25 or 26 hours long. Maybe even 27 or 28 hours long.

The other complication of 2nd shift is that it will make Scott driving to East Lansing to bring Cordelia home considerably more difficult. He'd get there after midnight, and she's unenthusiastic about trying to deal with that because it will be past her normal bedtime. She's also unenthusiastic about looking at bus options because that would leave her and her stuff downtown and needing to get here somehow.

I think the problem here is, first, that she's never done it before and would rather not have to and, second, that she'll have to carry everything between the bus from East Lansing and the bus from downtown to here. I'm not clear on where the former might drop her off, but the most likely options involve either a few blocks and/or street crossings between or a mid-trip transfer once she's in Ann Arbor. Getting to our house from the nearest bus is two blocks by one route and four from another. The four block version involves a busy street and a quite steep hill, but has the advantage of running more often.

None of this is impossible, just less convenient for Cordelia. I expect that Scott would still drive her back on Sunday if he's not working, but we couldn't count on that. He will miss the driving time with Cordelia in the car. That's been their father-daughter hanging out time for the last year.

I keep having the impulse to go to UCon. I think it's mostly me wanting some of the things that con gave me when I was healthier/more energetic. I also keep thinking that maybe I could do something there to help Scott with all of his board games and such which is... I can't walk well, and I can't carry more than about 10 pounds. I'm pretty sure I'd be a hinderance in that respect. Also, all of the points I made to Scott about me getting upset and being miserable if I go are still valid.

I had been enjoying the convention less and less over the years. Scott has still really enjoyed it. There are games he only ever gets to play at the convention. We own a lot of board and card games, only a handful of which Scott's ever gotten to play. Cordelia dislikes games, generally, and I get so tense that I shake and, eventually, sprout a headache when I try to play anything competitive or that has a lot of time pressure.

(My sister and I both react this way, and we think it's shared trauma from our grandfather having attempted to teach us (ages 4 and 5) to play euchre and yelling at us for every mistake. We were both fine play Authors (effectively Go Fish but with matched sets of cards representing books by specific authors) with our other grandparents, and we both played gin and gin rummy with our parents.)

I think the convention thing is kind of akin to how I feel when the ARide drives me past neighborhoods I haven't explored but thought I would one day. I can't. I don't know that I'll ever be able to. It's a loss.

Scott will go, and he'll have fun. It won't be everything he hoped for, but it will be a thing he's doing that makes him happy. He needs more of those.

Long time no post. I keep starting posts and then getting distracted and not finishing. At this point, I don't remember what I've said and what I haven't.

Cordelia is in her second year at university. She's still aiming for a psychology major. This year, she's aiming to stay on campus more weekends than she did last year (last year, she came home almost every weekend). We're only a month in, so it's too early to say how it will go.

My body has continued to disintegrate. I did months of hand OT and ended up with a couple of splints and some exercises. The splints keep my joints from hyper-extending, and the exercises help with the resulting muscle cramps.

I'm using a walker now, at least when I go out. It's a heavy thing that doubles as a portable seat so that I don't have to stand while waiting at bus stops. We got it so that, if I took a walk, I could stop and rest as I needed to. I can't use it for supporting my weight because I can't put that stress on my hands and wrists, but I do use it for balance. It works pretty well for that.

Back in May, I dropped my laptop while I was getting up. I caught it before it hit the floor, but I caught it edge-on on my left ankle. It's still swelling up and screaming at me when I do much of anything. I did a couple of months of PT, but we couldn't find anything that helped beyond ice and compression. I have to ration my time on my feet, so I can shower or do the dishes or go to an appointment. Heat (including warm showers) has tended to make the ankle worse, so the shower chair we got for me has been minimally useful as far as helping my ankle.

I took a lot of cold showers over the summer. I found them helpful for all of my joints. Now that it's getting chilly, cold showers are much less appealing.

I've had a couple of rheumatology appointments in the last year. The official diagnosis is 'benign joint hypermobility syndrome' which is one of those things that, if you google it, will come up with 95% of results saying, "Don't worry. Your child will grow out of it." The joint hypermobility diagnosis meant the rheumatologist I saw shoved me out the door because it's not inflammatory. He said EDS-h but declined to put that diagnosis on my record, just offered to send me some informational urls about it. I think he was mostly peeved that I can't take any of the medications he'd normally prescribe for pain.

I think that I'm hitting a barrier in having my pain taken seriously given that all I take is lots of acetaminophen and occasional naproxen. I'd take naproxen more if it didn't make me sick after about three days. It's just that naproxen is less nasty for me than all the other NSAIDs. Opiates are off the table due to my genotype-- I need higher than usual doses to get pain relief, and I metabolize what I take much more slowly than normal.

If it weren't for the pandemic and my logistical issues, I'd probably be exploring marijuana as an option. It's legal in this state. I just don't have easy access to cash or to transportation to any of the stores. I'm not willing to go online because I've got an extremely long list of things I can't have (when I tried CBD oil products, there was only one thing on the shelf that I could consume without getting ill). I can't smoke or vape due to asthma triggers.

We haven't had anyone in to clean in months. Cordelia's friend quit when her schedule got too full, and Scott said it was better not to spend the money ($20 a week). This unfortunately coincided with me becoming even less able to do cleaning. Scott's too overwhelmed and exhausted.

I suspect that, without the pandemic, I'd have noticed my loss of function/independence as a gradual thing. With the pandemic, I didn't really notice because I couldn't easily run errands or go to appointments or whatever for other reasons. We went out to dinner with Scott's family last week to celebrate our nephew's college graduation, and just sitting at the restaurant wiped me out for three days.

Scott will be going to UCon this weekend; I won't. He was a bit surprised, but when he thought about it, he realized that I was right about me going making both of us miserable. The convention changed their price structure, raising the weekend pass price, doing away with event fees, and doubling the number of hours of volunteering required to get a free weekend pass.

I had been thinking that I might pay the full price, run half the previously required hours of events, and see whether or not I was up to doing anything else. The last time there was an in-person UCon, I ran 8 hours of events and played 2 hours. My energy levels are unpredictable enough right now that running a 2 hour board game might wipe me out. Or it might not. There's no chance at all that I'm up to running a tabletop rpg. I enjoy those vastly more than I do board games, but they require a lot more energy to make them work, and I often don't notice until after just how exhausted I am. I also find hotel beds uncomfortable and can't safely eat the food on-site. There isn't anything I can do in the hotel room that I can't do more comfortably at home.

UCon is less than half an hour away from here by car, so Scott can get back quickly if I need him. It's the same sort of distance he'd have to travel to get here from work. That means I'm not particularly worried about being here alone. Well, not as long as we get a decent bit of grocery shopping in first.

I will have a lengthy post of fic announcements coming up soon. After that, I hope to catch up on some of my reading/watching logging in small bits. If I can post something small every day, I may be able to get back to posting regularly.

I'm not going to try to read things just yet, so I apologize for that in advance.

We've gotten me a walker with a seat. I only found one model that could handle my weight, and it has a lot of drawbacks that we're still figuring out how to work around. I suspect that we aren't going to find anything with fewer issues, different ones, maybe but not fewer.

I'm not using it as a walker. I can't because I can't put weight through the palms of my hands or my wrists/elbows/shoulders. I'll never be able to use a walker or a cane or crutches of any sort.

The wheels move well enough that I can keep it going with my index fingers. The difficulty is that, no matter how I push the walker, the vibration of the wheels on concrete and asphalt hurts every joint in my hands and wrists. I have one set of splints that helps, but they hurt differently and are both bright pink and difficult to wash.

We've added padding to the handles in hopes of mitigating the problem, but I can only walk for a few minutes before I have to stop and rest my hands. I can limit the vibrational pain by placing my fists on top of the handles and holding my wrists rigid directly over them, but my elbows and shoulders don't like the resulting awkwardness in how I stand. I can't tolerate that contortion for any longer than I can tolerate the vibration. I suppose that combining them extends my pushing time.

I'm pretty sure that rubber wheels would help at least a little. The current wheels are hard plastic. I'm not sure replacing them is feasible, though. I'll ask Scott to look into it because he'd have to do the work.

The walker doesn't have any sort of brake that can be set before sitting. There are hand brakes that are for-- Well, I have no idea what. Do people actually use walkers in a way that would make hand brakes (which are not reachable when one is seated) a desirable feature?

Pulling the walker along after me by hooking fingers on the crossbar involves a lot less vibration (but not none) but decreases my ability to steer and to otherwise control the walker. It ends up banging into my heels a lot.

I've taken the walker out four times since we got it, and I really would like to use it more. Having the ability to sit whenever I need to would help vastly because sitting for a while and then walking again is the best way to tell the difference between my muscles being wobbly but more or less fine and my muscles being wobbly because I'm on the verge of longer term damage. I won't be able to use it on grass (which I hesitate to walk on anyway because I turn my ankles way too often) or on any of the walking trails around here (those are too narrow). Part of the reason for the ramp out back is for me to be able to get the walker to the driveway without having to pick it up.

(I probably could if I didn't use my hands, but it's heavier than I hoped for when I started looking.)

I don't think that me taking walks again will do anything about my blood sugar; it never did before. It's just that it would be amazing to have the option to walk without worrying about getting stuck three blocks from home because I had to sit on the ground and now am not sure I can get up and walk home.

The walker also won't be useful if there's any ice/snow as I won't be able to rely on clear pavement for it unless I'm in the street (and even then...). The lack of brakes will mean that parking it for sitting can only happen where the pavement is completely clear.

I ordered some rubber doorstop wedges to put under the wheels for when I stop and am not sure of the incline (one of the necessary Amazon purchases last week). Friction is of limited help if the incline is more than a few degrees. There's a storage bag under the seat, and I'm thinking I could carry the wedges there. They're not that expensive, not for proof of concept. If necessary, I can get something better once I know that wedging the wheels is feasible.

My feet don't reach the ground when I sit on the walker seat. They do land nicely at the right height to rest on top of the wheels on that side, and I'm hoping that that will also provide some braking.

Using the handles and pushing the walker in front of me, even if it's with one hand or with a single finger on each hand, helps my balance a bit. Usually, for that, I rely on the weight of my purse or a bag hanging from my elbow, forearm, or hand. Three plus pounds on one side or the other or on both keeps my mid-back from wobbling in ways that make each step considerably harder and increase the odds of negative post-walk effects.

I haven't worked out the best way to carry my purse with the walker. I can tell that it will be a challenge, so I haven't tried it yet. I expect to need to tomorrow.

I'm going to try to update here more frequently and with something more than fic announcements and media logging (and I'm behind on the media logging). I think that part of me not posting has been me feeling like I have nothing to say that isn't depressing. Part of it is, also, very definitely, that writing about the things that stress me out makes me upset.

And not in the 'it will be better after I get it out' way.

Scott and I are fully vaccinated with the second dose having happened on the 7th of April. Cordelia has her second dose on the 1st of May.

Scott and I drove an hour each way, crossing state lines into Ohio, for our vaccine. The folks running the site said they were getting a lot of people doing that. The main drawback was that we had to photograph our vaccination cards and send the image to our doctors rather than having the vaccination site able to put it into our state's database.

( Cordelia. End of senior year of high school and plans for college )

Cordelia's next try at the driver's license test will happen two days after her 18th birthday. I pushed for earlier, but she and Scott resisted both practicing and scheduling. I think that the scheduling actually happened when I pointed out that it would be better to pay for a license rather than for a state I.D. when she turns 18 and then a license later. She has to have one or the other for several things that we need to do before she goes to college.

The A-Ride people approved my card renewal. They also told me that, next time, I won't need to get the medical half of the form filled out. My disabilities are now clearly things that will only get worse rather than having the potential to change for the better. This is... Getting the medical half of the forms dealt with is a PITA, but I'm also unhappy to have to look directly at my increasing disability.

I know that it's there, and I've talked (very briefly) to Scott about it. We can't do much about it right now because I adamantly don't want to include Cordelia in the discussions. I don't want her to think there's a reason for her not to go away for college or that she will need to come back here afterward.

( My physical health or, rather, lack thereof )

I've told Scott that we need to do some sort of couples counseling around how we deal with my disability because the ways we're currently handling it aren't emotionally sustainable for either of us. We just can't do it until either Cordelia moves out or we can go to appointments in person, leaving her at home. Some of the problem is communication styles (Scott was raised in ask communication whereas I was raised with offer), and some of the problem is how much of our life he's going to be carrying and how unfair it is to both of us. I don't think that any of that is stuff we can manage without help.

Okay, I'm now definite that working in the bedroom (sitting on the bed) is the key to not having the hand/wrist issues. There's no way to set up at a table with the configuration that works because it would put the tabletop somewhere inside my knee.

I was hoping that I was wrong because the late night/early morning hours have always been productive for me in terms of writing. I can write at other times, but I focus better then, even with interruptions from Cordelia.

I would like to find some sort of psychotherapist for myself, but a lot of my issues are things I can't discuss via any sort of tele-visit. A lot has to do with Scott and Cordelia and my increasing disability, and I can't talk about it at home without one or both of them as an audience. I don't think that trying to discuss it while walking around the neighborhood or sitting on the front steps would work, either, especially not for a first appointment.

This evening's goal is completing my absentee ballot so that I can mail it tomorrow. I've done the easy bits, so part of the process will be me researching each candidate. Fortunately, the ballot proposals are all straightforward.

It's been a long month. I've written a few posts and then not gotten around to posting them. At this point, I'd have to edit so extensively that it doesn't seem worth my time to make an effort to get those to the point of being postable.

( The disability review/appeal stuff )

Earlier this month,

evalerie came over and provided help and moral support while Scott and I got everything out of the bathroom cupboards and I decided what to keep and what went where. I think we got rid of more than half of what was in there, possibly as much as 75% of it.

I now know where everything is in there, and our cleaning lady is no longer putting things I need in places I can't reach.

( The eye related stuff )

( Experimenting with workarounds for physical issues )

( Scott's )

I'm a little frustrated because I have a very small window of time when I'm alone in the house and can work on things I find physically difficult or can easily watch DVDs or listen to CDs or audiobooks. (No, headphones, earbuds, etc. are not an option.) The watching and listening thing is not helped by the fact that the CD/DVD drive on my laptop has decided to die. Judging by how it sounds and what happens, I suspect a mechanical failure.

( Computer stuff )

The bloodwork before my doctor's appointment last week shows that my A1c is up, so I'm going to have to work on that. Being able to go outside would help considerably. At this point, I can handle the bright light, but ice underfoot is still potentially an issue. I usually fall due to ice at least once each winter, and I would really rather avoid it if I can.

I have one exchange assignment still to complete. Chocolate Box 2020 is due on the 7th of February, and I've barely started writing. I have an unrevealed story in the Past Imperfect collection. I've also got a list of a dozen one shot WIP that I think I might be able to finish if I just give them a hard push for a few days. My current plan is to work on those rather than signing up for any other exchanges. I may take pinch hits or write treats, but I'd very much like to get these things done and posted.

I've gotten a couple of 'it's so sad this will never be finished' comments on Rheotaxis this month. It's made me look at it and wonder if I ever will go back to it. I know how it ends (I have a draft of a final chapter so I know where I'm aiming). I know what happens after. It's just been years since I worked on it. My style has changed a good bit, and I still don't know how to make that next chapter work.

I spent yesterday rereading an rp that

hopeofdawn and I did years and years ago. It was a post-Rheotaxis thing, and I think it was a good story. We never finished it because the things we were interested in playing out diverged too much (I like writing claustrophobic discussion scenes, and she likes writing action scenes).

I'm a little tempted to see if I could pummel those chapters into something postable on AO3 or if Hope would be interested in working on it with me. I'm not sure it would work well because rp relies on the head hopping being okay. The scenes would lose a lot from being put into a single limited 3rd person POV, and I'm not good at putting that sort of thing into an omniscient 3rd. There are also gaps in the story that we left because they would have involved one person writing solo due to which characters each of us wrote.

I don't know if anyone would want to read that even if I did write it up. I don't know if I could come up with an ending that was even remotely satisfying.

I feel like there are a lot of interesting stories out there that don't end up archived because they're written as an rp narrative.

So the cold turned into bronchitis. There was some risk that I had pertussis as it's around in the schools right now. My having gotten exposed in the middle of September's run of prednisone was entirely likely as I accompanied Cordelia to her physical and could easily have picked it up in the waiting room.

We ended up going to urgent care last week for the cough. The clinician there took a sample for the pertussis culture and then freaked out because me having antibiotic allergies meant that her check list of things to do didn't work. She had no idea what to do. She gave me more prednisone, this time at a much higher dose, but kept asking if I was really sure I was allergic to Augmentin and Zithromax because her checklist said she needed to give me prophylactic antibiotics while we waited the week it would take to the culture results.

The second run of prednisone made me feel much worse which was terrifying. I felt like I was never going to feel any better because each dose was worse. Fortunately, I started feeling noticeably better once I finished the five days. Pretty immediately so. I ended up seeing a doctor at UHS that same day, though. There's not much to do at this point but to rest and hope to feel better quickly.

I haven't been able to use my c-pap in a couple of weeks because it makes me choke and cough. I had a few nights when I was afraid to fall asleep. I breathed much better when lying flat on my back, but I wasn't breathing strongly and worried about sleep making that slower/weaker. I cut my sleeping medications entirely for a while and then went to 25% of my normal dose.

My current plan is to try the c-pap tonight and see how it goes. Scott's not working tomorrow, so if it doesn't work, he'll still be able to get a reasonable night of sleep. I'd probably have tried it a night or two ago, but he worked Wednesday through Friday.

( Talk about my hand issues )

I think I'm not going to sign up for Yuletide. I'm not 100% sure that I'll be able to prepare the scenarios I've committed to for UCon. I don't want to make any other promises at this point.

My LTD appeal is still in process. I need to proofread, edit, and sign a statement that my mother has drafted for me. I simply haven't been able to cope with it this month.

Scott's going to be working 2nd shift from the second week of November onward. He says it's temporary, but I'm worried that it won't be. Him working 3 p.m. to 11 p.m. will be incredibly awkward even short term, and it will mean that he and Cordelia don't see each other at all during the week. It will also mean that I'll need to sleep roughly 2 a.m. to noon and won't have any time when I can be noisy.

My hands and wrists were very cranky with me last night. I think I’m noticing it more because the prednisone lowered my pain levels for almost a week.

I’m still wobbly and having issues with my ears feeling blocked. I’m not all the way to dizzy, but I am at a point where I feel unsafe without a wall or counter or something else solid within a step or two. Heat helps with the drainage and so do certain ways of sitting/lying. Sadly, the useful ways of sitting make other things hurt. As far as I can tell, the problem is mostly muscle tightness in my jaw and neck. Sudafed and mucinex help considerably less than heat does, and the blocked feeling doesn't include pain, so I'm currently assuming it's purely mechanical.

I’m not sure I’m going to sign up for Yuletide this year. I’m feeling overwhelmed without taking that on. I love the exchange, and I got some amazing stories last year, but I don’t know if I can write anything to order right now. Maybe I can treat, but I think it's entirely likely that I'll not write anything new during the remaining months of this year.

Of course, some of this is me looking at the nomination coordination posts and not seeing things I’d want to offer. I tend to feel discouraged during early Yuletide discussions anyway simply because there are so many things I've never heard of or already know I'm not likely to enjoy. I might nominate a couple of popular for Yuletide fandoms that I'd like to treat in order to free up other people to nominate less popular things, and I'll look at the 5 minute fandom requests once the tagset is complete.

Mom came to town Monday afternoon. She rented a small apartment outside of town. She spent most of Tuesday trying to get her computer (brought from their house on the other side of the state) to admit that the rental's WiFi existed. She got that late on Tuesday by plugging her phone into the computer. She's not sure why that helped given that the phone doesn't have any sort of data plan.

She spent most of yesterday afternoon asking me and Scott questions about things I can and can't do and about the times when I respond irrationally (Scott and Cordelia agree that I do that much more than I thought I did. I don't actually necessarily notice when I have done it, though, so they're more likely to be correct than I am.)

I think I need to explain that my agoraphobia has two branches. The first is fear that I'm going to misjudge what my body can handle and fall or otherwise injure myself. Historically speaking, I've done this a few times a year. The less I go out, the less it happens. Any plan for going out also has to include a plan for what I do if my body breaks on me, for how I get home if I can't breathe or can't see or can't walk or can't spend more that a few minutes away from a toilet.

The second fear is that I'm going to get upset or be surprised by something and not be able to handle it without raising my voice and/or punching someone. I haven't punched anyone since I was about 12, but when I'm panicking, my physical and mental energy shifts to attack mode. It's much harder to walk away from an interaction with a clerk in a store or with a bus passenger than it is to walk away from an email or chat exchange.

It’s not so much that I’m afraid of going out and/or being in places with a lot of people. I’m afraid of the side effects of me getting surprised. Places with more people have more likelihood for me not to be able to withdraw or to put my strategies for retreat/self-protection into effect. There’s also more likelihood that I’ll be startled and respond without thinking.

I don’t like dense crowds because they make me helpless to take care of myself. The people are obstacles rather than threats.

Scott's work schedule is kind of ridiculous. Monday and Tuesday, he worked 12 hours on the factory floor. He had yesterday and today off (I think he has tomorrow off too) but will work 12 hours both days during the weekend. It's going to be 12 hour shifts with odd days off up through Thanksgiving (which makes UCon an iffy proposition. He's scheduled to work the Friday, and I'm supposed to run a game that morning. Probably the best solution is going to be me getting a room for Thursday night). He's finding the work physically exhausting in ways that worry me. There's a dangling possibility that he might be able to go back to scheduling if he can reach the point of that not wrecking him psychologically, but I hate to hope for it because it really was bad for him.

The coworker (now back on the factory floor) who had the scheduler job before Scott has told Scott that he, too, had a panic attack during his first cider season. Not too surprisingly, this makes me more frustrated with the company.

I need to see if I can get Scott out of bed. It's 11 a.m., and I need to make phone calls. I'd rather not do them while he's home, but that would mean delaying them about a week since none of them can be made outside of business hours. I also can't, in good conscience, make them while he's asleep because I get loud. I can't really put off the call to the dentist because I need a note from them by early next week and because they're closed on Fridays.

( Cut for length. Some discussion of health/anxiety/depression/pain and disability )

Please assume I haven't seen anything posted here since early August. I haven't even been opening the DreamWidth tab.

I did not manage to get myself to bed before Scott and Cordelia got home last night, but Scott didn't set his alarm, so we all got about six hours of sleep instead of the five and a half I was expecting. (Not that I wasn't exhausted. I was. I very much was.) I tried to nap through part of the morning but don't think I actually slept.

Scott had scheduled a vacation day, and he and I went to the Northside Grill for lunch. Then we dealt with some paperwork. Scott went to the store to pick up some things that we'd forgotten on Saturday. After that, he mowed the lawn. I emptied and filled the dishwasher and am currently working on laundry.

I also did some research on the two hotels next to the one where the FanWorks Con will be. Both of them look safe with regard to pets, but I'm feeling overwhelmed at the idea of committing to going because, the more I look at it, the more I realize that it's only really feasible if I drag somebody else along.

I can get to the hotel unaided. I just can't get to the hotel with everything I'll need for three days unaided. If I didn't need to consider food, I could get there, but my dietary restrictions really do mean that I will need to assume that I can't get food, once I'm on-site, without access to a vehicle.

Our niece might be interested in going, and she can drive, but I don't know that she could afford to pay for anything. I can think of a couple of local people who might be interested, but asking just feels like more of a hassle than just not dealing with it.

I can't tell where the edges are of me not being able to deal with x, y, and z right this moment versus me biting off more than future-me will be able to chew. Over the last two decades, my life has contracted gradually but pretty steadily. A lot of it has to do with me only being able to do so much, and I've spent the last several months teetering in a gray area. I can't tell if I'm actually less able to do things or just worried that I'm less able and so restricting myself.

Misjudging that line-- I want to be able to do All the Things, but, if I misjudge, then I can't do any of the things. I'm hobbling a bit today because my calf muscles are cramping from all the walking I did yesterday. I knew that that might be a consequence when I went out walking yesterday, and I looked at today's must-do list and decided that it would be okay if I couldn't do most of it.

I'd have been in deep trouble if something necessary had come up yesterday evening or today, anything that required more than my body could manage. (What my body can manage limits what my mind can manage more definitely than the other way around.) And I wasn't able to prepare dinner yesterday as I'd planned because I misjudged.

At any rate, my social connections have been suffering because of this. I've always been bad at answering emails/comments promptly, but it's gotten worse. I will kind of drop those things for a while and then not want to deal with trying to catch up. I will simply not start conversations or not go to specific sites where I would normally interact or even semi-interact (here, for example, or FB. I really need to go back to FB because there's a friend who likes to chat there, and I've just been pretending the site doesn't exist).

Maybe I need to schedule things with a timer and make myself deal with this stuff for, say, fifteen minutes at a time, a couple of times a day? I know that that sort of scheduling can work for me, but I don't do it often. I'm not sure why.

Well, no, I do know why. Once I establish a routine like that, I'll be very upset with myself if I need a nap or have to deal with something else I haven't planned for. Brains are tangled things.

I took a cab to UHS yesterday because it was raining. I took the bus home even though it was still raining (and raining harder). Part of that was that I wanted to get in a bit of a walk, even if it did mean getting wet.

Ingress is challenging right now because I no longer have the mid-range resonators that are hardest to get (at least for me). I can get lvl 1 and lvl 2, but 3-6 are harder.

( Medical stuff-- pain, fatigue, medication, and food )

How on earth am I supposed to remember every single medication I've taken in the last twelve months? Prescription and non-prescription both... I can get some of the prescription information from my pharmacy, but there were a couple of in office injections and, I think, one or two prescriptions filled at other pharmacies. Also, the form only gives six slots for medications. I'm pretty sure I've got three times that. There's a section for additional information, but it's a PITA to use it, and I'm worried I'll run out of space there, too, since it's additional information for everything on the entire form.

Signal boosting:
A non-profit (@InvDisability) in the US has taken out a trademark on the term 'invisible disability' and is actively enforcing it. Can we take my rant about how ridiculous that is as written?

There's a Change.org petition to the US trademark and patent office (and to the president) about it. Not very many people have signed. I have no idea if the office will pay attention to such a petition, but signing is a low spoon option for protesting.

https://www.change.org/p/president-of-the-united-states-has-your-identity-been-trademarked-disability-for-sale

I woke this morning with a headache that I haven’t quite managed to get rid of. I took Ativan (because it might be trip related anxiety) and Amerge (because it was definitely migraine-ish). It might also relate to the weather. I heard thunder right for a couple of hours this morning. I just can’t seem to kick this one.

Scott is worried that he will get sick because he often does during his vacations. He thinks that suddenly not being sleep deprived signals his body that it can afford to be sick.

I’m going to work at getting Scott to bed by 10:00 on work nights. It will mean prodding and nagging which I hate doing, but apparently he can’t do it himself in spite of wanting to or, at least, saying he wants to.

I got Cordelia to talk to me about possible shopping destinations. Water Tower Place didn’t appeal to her at all. Her main objection was the lack of a book store. Neither of the other options seem to have a book store, either, but they do have stores that carry things she won’t see at our local mall. I think her interest in Navy Pier is more or less nostalgia because she had a lot of fun there when Scott’s brother’s family lived in Chicago (she and her cousin can’t have been older than about six). All of the things that I told her about that are there, she kind of went 'Eh' to (except the candy store), but she still wants to go. She’s very enthusiastic about the idea of Chinatown because the photographs online are very colorful and full of things that she’s not going to see in Ann Arbor.

Scott and I are thinking that they’ll start Monday with Willis Tower then go to Navy Pier and then to Chinatown. If I can manage the anxiety/agoraphobia, I will join them in Chinatown, and we’ll find dinner before going back to the hotel. I’m not entirely sure about paying admission to Navy Pier entirely for nostalgia and a candy store, but… Yeah.

Cordelia doesn’t actually care about the museums (or says she doesn’t). Scott wants to go to Science and Industry because it’s been his favorite since he was very, very small. I want to go to Field because I want to see the terracotta warriors exhibit (which costs extra). Both museums are big enough that it’s impossible to see everything in a day even if you’re there from open to close. I’m trying to figure out if we should try to do both museums or just one or the other. If we do just one, I’m inclined to go for Science and Industry because, for me, seeing a museum exhibit isn’t really all that different from seeing photographs. I can’t touch anything either way, so there’s the same level of distance and the same tendency for what I see to vanish into a kind of cotton wool memory where I know I saw it but don’t really remember the sight.

Scott needs to do several things today so that we can leave on time tomorrow. We have to pick up library holds. We need travel food and hotel room food. We need portable recharger thingies for our phones. I can’t do any of that without him to drive.

I need to dig out suitcases (I wrote yesterday. I didn’t actually do anything useful). Now that we have a plan for Monday, I have to print directions. Scott’s planning to get an app for finding directions on the fly, but he can’t tell which one is the official app and refuses to go to the the CTA website in order to identify it. I have no idea what that refusal has to do with. Is it like the old 'If you ask for directions, you lose,' thing?

I’ve got enough clean clothes to pack without needing to do laundry, so I should be able to start. Cordelia has packed everything except what she needs to get through today and tomorrow morning. I’m trying to decide whether or not I want to take all of my medication bottles or just count out enough to get through the trip. The bottles are a PITA, and I would have to leave them in our hotel room. I don’t think anyone would steal any of my meds. People don’t go wild for anti-reflux meds or for singulair or what have you. The bottles are also evidence that the medication is legitimately prescribed. But, really, would anybody think I had levothyroxine for some other reason? I think Wellbutrin is the most likely, of any of my meds, to be abusable, but that’s purely a guess.

Let’s see… The trash has to go out. It’s already a bit stinky. I can’t imagine what it would be like by Wednesday. I should probably pull things that will go bad out of the fridge and toss them before I take out that trash. I’ll run the dishwasher tomorrow morning, whether it’s full or not, because I’m not willing to leave dirty dishes in there for days.

Oh, great. The mail just arrived, and I’ve got a largish packet from Social Security. They want me to prove that I’m still disabled. I think I’d be better able to deal with this if I didn’t have a headache and wasn’t trying to put together a vacation plan. They want a list of every doctor/medical professional I’ve seen in the last year. I hope I can pull that list together. It will probably help that all but one of them is part of the UMHS.

I realized last night that the August election is going to happen while we’re out of town on vacation. I hadn’t previously made the connection for some reason. Fortunately, it’s not too late for us to get absentee ballots. I could just go downtown and vote at city hall because I’m free while they’re open, but Scott can’t do that, so I’m just going to send both our applications by mail and hope that there aren’t any delays. I really wish that applying online was possible.

I’m also looking at the restrictions on absentee voting and feeling a bit— I don’t know; upset is the wrong word. None of the legally permissible reasons for absentee voting actually cover my situation. The closest is 'physically unable to vote at the polls without assistance from another person.' That doesn’t quite apply.

I’m worried that I’ll panic due to all the people and not be able to stay. I’m not sure that Ativan would be enough or that voting while on Ativan is a great idea. I mean, I’m not going to be making decisions at the polls. I’ll already know how I’m voting.

I’m also worried that I’ll wreck myself physically what with standing in line for as long as is likely to be necessary. I probably wouldn’t fall over or collapse or anything, but I might not be able to get out of bed the next day. Also, if it’s cold, I might have trouble breathing due to asthma (and I don’t have the option of a rescue inhaler).

None of those things are things that assistance from another person would resolve, and one of them is a psychological barrier rather than a physical barrier. This isn’t an I can’t hold the pen or I can’t read the ballot or even an I can’t get into the polling place because there’s a step up at the entrance (I think there is, but I don’t remember for sure). It’s as if the folks making the law either had a failure of imagination or wanted to exclude people like me from voting. On the physical issues that affect me, I suspect the former, but I kind of wonder about the latter in terms of my agoraphobia/anxiety issues.