Patience, and some history

Its hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to.
-From The Spoon Theory by Christine Miserandino

Do you run through each day on the fly,
when you ask "How are you?", do you hear the reply?

When the day is done, do you lie in your bed,
with the next hundred chores running through your head?

You better slow down, don't dance so fast,
time is short, the music won't last.

-From Slow Dance by David L Weatherford (Warning: music and obnoxious formatting at the link)

I used to live a high-speed life, and in some ways still do. In high school, I took the most challenging courses offered each year, plus concert/marching band. Marching band by itself is a huge time commitment, involving band camp, after-school practices, in-school practices, home game performances, competitions, and annual ceremonies such as Veterans Day and Memorial Day. For two years in high school, I was involved in committees at the UU church I attended (my senior year, this was the Executive Committee). I was in chorus for one year in high school, and in the UU society choir for two. I participated in some GSA events. I went to poetry club meetings. I worked on the literary magazine. I volunteered. I somehow juggled all of these, if not effortlessly, at least well.

[A lot more after the break.]

Quick Update

If you read either of the last two entries, you know that I did a lot of driving last week to get myself and my brother to my mom's house for Thanksgiving (US). I did have time to sufficiently recover before driving back to school yesterday.

But yesterday's drive set me back again. I was doing pretty well; I didn't need more than one stop to stretch, at which point I also refilled my tank. (Seriously, I've spent >$65 on gas in the last week, first to fill, then to get back to full after driving extra and then letting someone borrow my car. *sigh* I technically could have waited to refill my tank, but didn't anticipate prices being any better a week before Christmas than they are now. And I could have bought a new pair of shoes with that money.) The bad part of the driving came when I hit Hartford and there was stop-and-go traffic for I think more than a mile to get onto I-91, and then I-91 was backed up for another mile, so I spent at least half an hour longer on the road than usual, and all of that was for a kind of driving that really messes up my hip and knee. On a Sunday afternoon, which I thought would mean light traffic, but Thanksgiving, go figure. I actually resorted to two-footed driving for the stop-and-go, or my right leg would be a LOT worse today. As it is, I took the medical van once to get to the other end of campus for class.

Anywho, my leg isn't in agony today, which is a miracle in itself, but it also isn't working as well as it does when I haven't been driving a lot. It'll get better. I'll just nurse it for a few days. And no one here gets mad at me when I can't do stuff!

OTOH, my wrists are in a flare-up. Basically the symptom I have is that things feel "tight" as opposed to extremely painful all the time. I need to find effective massage techniques or exercises for those kinds of pains. It's not bad enough to impede my typing, but I kept massaging my right wrist while taking notes in class today. I think I ended up with four or five handwritten pages--no wonder it hurt! And this is starting the last three or so weeks of class and finals, which means, lots of papers to finish the semester. But it's almost over!

Ableism

Trigger warning for ableist bullshit. Also, disclaimer: "you" used in this post is a general "you" that isn't addressed specifically to you, the reader of this blog.

ETA terminology: "zie" and "hir" are gender-neutral pronouns, sort of a cross between he/she and him/her.

My facebook status:

For the record: when I say I can't drive any more today, I mean I can't drive any more today.

I know I don't LOOK disabled, but do you really want to see for yourself what happens when I push my body too far? Because been there, done that, have the (emotional) scars to prove it.

This has been bothering me since something happened earlier this evening in which the individual in question thought that telling me zie'd been driving a lot more meant that I didn't have the right to complain.

But, this individual, I'll call hir A, is able-bodied. Zie rarely gets sick, doesn't have a disability, and as far as I know is only chronically short on sleep (not that that's a good thing, either, but that isn't nearly what I have to deal with).

Hint to the world: I don't kid about how much pain I'm in. There's actually a good chance, depending on who I'm talking to, that I understate it. So if I'm telling you I can't do something, it's because I have absolutely no spoons left to do it, or will have to borrow against the rest of the week, or have already gone beyond my limits, or some combination of the above.

To suggest otherwise is to disrespect my autonomy and ability to judge my own body. And it isn't a fucking invitation to play the "my life is harder than yours," card. It's a simple statement of what I'm currently capable of, and I frankly don't give a shit what you've had to do today if you think I'm deliberately trying to elicit that response.

Have a good fucking night. You know what? Have a good night. Have a great night. I hope it's one you enjoy so that maybe you'll be nicer to people tomorrow.

Ouchies

I have nothing pretty or thoughtful to say today.

I drove home after class yesterday in order to miss the day-before-Thanksgiving traffic. Had two different people try to get rides from me and I ultimately said no to both of them. One was a housemate, and I wish I could have gotten her to the airport, but my anxiety kicked in with a vengeance when I realized it would take me beyond where I usually go, and then driving directions from the airport were sending me up roads in Western MA instead of Central/Eastern, which is the way I usually go, and I had NO knowledge of the other roads or where things like rest stops and gas stations were. Equally, I really didn't need the extra driving time if I backtracked.

The other person was my brother. He wanted a ride after I made it to Mass, so that he could get here yesterday. He called first thing in the morning, and I told him no because I knew I would be ouchy after two plus hours driving. I wasn't wrong. And I ended up driving him this afternoon, instead. And on the way back we hit stop-and-go traffic because of lights (cops and I think construction) that were right off of the connection between I-190 and Rt. 2, so it was backed up several exits back, but cleared up as soon as we passed that.

I had my brother make me a grilled cheese for dinner because I really couldn't stand up long enough to make it. My right knee, my hips, and my lower back all hurt. Well, the lower back is very tense, which I'm only peripherally noticing until I try to stand up for more than two seconds.

I can't drive him back. I'm glad I have a couple days to recover before I drive to school on Sunday, because I lost a lot of spoons thanks to two fairly long drives in two days.

At least the nap I took when I got home cleared up my fatigue? I think if I had tried to stay awake any longer, I would have gotten brain-fogged, too.


ETA: The nap didn't help as much as I thought it did. I was getting tired again within an hour or two of writing this post...and I've taken amitriptylene in the hopes pain levels will go down, even if it was also time to take it again.

Hunger and Homelessness Awareness Week

My university hosted its fifth annual Fast-a-Thon this past Tuesday to raise money for the local food pantry, as part of Hunger and Homelessness Awareness Week. Basically how it works, is students donate part of their meal plans (how much is up to them), and theoretically fast for the day, and then break their fast with a banquet featuring food from a local restaurant and speeches from various people. Last year, they raised over $14,000, which was more than half of the food pantry's budget for the year. This year, the total was at least $13,000, though that was before last count.

I think it's amazing that students at the university are willing to support the larger community in such a substantial way.

But. There were some things about the event that made me uncomfortable, even resentful. I don't think this is their fault. It's not really anyone's fault. But I heard several times over that part of the purpose of fasting was so that participants experienced in a tiny way what it was like to skip a meal, and be a little hungry. The event organizers never acknowledged that some of their own peers might already know what this is like. I am one of them.

Current medicines

At some point, not too many years ago, the only medicine I took every day was Claritin, for allergies. Oh boy, has that changed.

I present to you, my daily meds:

[Image description: Six pills, in three groups of two, and two bottles, one small, the other larger.]

Daily Meds--6 pills, two bottles

These medicines include: an antihistamine (since my allergies never went away) and omeprazole, an antacid, in the morning, to be taken well before food; piroxicam, a non-steroidal anti-inflammatory drug or NSAID, and Flintstones multivitamins to be taken with food, usually at lunch but sometimes earlier; an eyedrop bottle, which I use maybe once a week; a nasal spray, which I use right before bed; and amitriptylene, which I try to take around 10pm because it makes waking up difficult.

Random details: 1) The nasal spray comes from a different supplier than my last bottle of this particular prescription, and this stuff fucking burns. I stand there for about a minute after using it just holding my nose while the sensation fades.  2) If you are ever tempted to buy the CVS version of the Flintstones complete, don't. It tastes like chalk and is nasty. I bought two bottles when they had a sale, because those two were cheaper than ONE of the Flintstones. I doubt I'll ever finish them. I ended up buying Flintstones after all; those ones I actually look forward to eating because they're yummy (made for kids, you know). 3) Amitriptylene is extremely soporific. The longer I stay awake after taking it, the harder it is to wake up in the morning because I haven't had a full night's sleep. That is, the effect is exaggerated with the addition of the medicine. Also? I wouldn't recommend trying to walk if you've taken a dose and are already extremely tired and are up late. I was not at my most graceful last night. At least I didn't walk into anything? I was definitely weaving and having to rebalance a lot.

Moving on, on any given day I might add tylenol/acetaminophen (but never advil/ibuprofen as it's another NSAID and can't be taken in conjunction with piroxicam/feldene) if I have a headache or if bodily pains aren't quite under control.

However, I also caught a cold recently. It started with a sore throat last Friday afternoon, and by Monday the sore throat was gone but was replaced with general stuffiness and the beginnings of a cough. As a result, I've been taking these as well:

[Image description: A box of Mucinex, three cough drops, and 5 little sample packets.]

Cold Meds--cough drops, tylenol, decongestants, mucinex

The health center has a lot of free samples they give out, usually in the form of a "cold care pack" unless asked for something specific. This includes medi-phenyl aka phenylephrine, tylenol, and cough drops. I've been using everything but the Tylenol. I've also been coughing enough that I wanted to get something specifically for a cough. This afternoon I called the health center to ask for cough medicine, and after a bit of back and forth involving the nurse and the nurse practitioner looking up drug interactions, they determined that the best thing would be Mucinex. Apparently there's a "class D" (don't ask; I don't know) warning against taking anything DM with amitriptylene--something about the drugs being too similar. As a result, they told me not to take Robitussin DM, which is what I would normally take for a cough. They also offered to refill an inhaler they gave me last year when I got sick, but my lungs don't feel "tight" this time as they did last time, so I declined. (The tightness was "something like bronchitis; apparently the bronchial tubes weren't expanding enough to allow me to breathe. That was fun when I went in a hot, glass building for a meeting...ended up wheezing in the hallway and having my class dean and half a dozen other people very concerned about me.)

At any rate, those are the medicines I'm on at the moment. My apologies for the lack of prettiness on the shots; it's way too late to have natural light and the only lights I have in my room create shadows of various kinds, which was making the whole thing look kinda bad to me.

I'm up to six pills a day (+ another 10 or so until this cold is over). I wonder how many more I'll have to add before the year is out?

Edited to add a 3) to the random thoughts list.

An (very long) Observation

I have a pretty specific perspective on life in general and how I treat my disability in particular. By specific, I don't mean extremely detailed; I mean formed from my positions in life. I am young, a woman, attending a small residential liberal arts college in New England, poor, a feminist, and plenty of other things besides. As a college student, I talk to tens of people on most days of the week. As a house manager, I'm expected to be responsible and to be a resource for my residents and the community at large. I developed this disability (or maybe it would just be recognized?) in my freshman year of college, and was quickly diagnosed with Sjogren's Syndrome. I went through elementary school with epilepsy, but in middle and high school I was pretty "normal" health-wise. Unlike epilepsy, for which I had a "long shot" at outgrowing it (whatever that means; I haven't had a seizure in over ten years), Sjogren's syndrome doesn't seem too likely to just go away, and so I'm suddenly looking at a lifetime of dealing with this particular form of disability.

Don't get me wrong; I have plenty of things going for me. I'm extremely motivated to do well and learn, and to find a job after college that will allow me to support myself completely independent of my family (though that isn't likely to happen right away). If I don't do those things, I will be struggling for survival. (I mean that in a literal way; as mentioned, my family is poor, so I don't have too many resources to fall back on in the financial department, and if I don't get health insurance, I'm pretty sure I won't be able to make a living because I'll be in too much pain to do so.) I'm also what's called "Gifted" as far as academics go. I was one of those students in high school who didn't even find AP courses terribly difficult, except in the amount of work assigned. College was the first time I ever struggled to pass a class (it was Chemistry, a science I didn't particularly like anyways, but I thought I was pre-med then, and my study skills sucked due to the didn't-need-to-try thing and also the bad school district thing). At any rate, I'm very capable of doing many different kinds of mental work, and greatly enjoy doing them.

But all of these things give me a pretty biased view of life. It's very different from the one held by, say, a woman* I know who is in her 50s, never went to college, manifested fibro-myalgia in her 40s, has three kids, has limited access to and knowledge about the internet, and sees a limited number of people on any given day. Or any other variation on the many parts of a person's identity.

These kinds of things pop out to me when I try to discuss my particular needs with people whom I need to respond to my needs. The woman in the paragraph above is someone I alluded to indirectly in my post about Everywo/man MD; she was one of the people upset when I asked everyone who could read my facebook status to stop offering me unsolicited advice. Her thoughts were that she knew what I was going through, so she should be able to offer this advice without me getting mad at her. Thing is, she doesn't know what I go through. Sure, some of her symptoms are similar to mine, but she doesn't talk to dozens of people each day, and she doesn't attend a college where she has an extremely high chance of running into at least 10 people who genuinely want to know how she's doing each day, and she doesn't have many of those people respond with either oft-repeated (and sometimes useless) advice, or clueless advice. Beyond that, every person has a different response to stress, and so things that work for her are useless or actively harmful to me.

This isn't a one-way exchange, though. I can empathize with other people who have chronic illnesses or disorders, but I don't know everything that goes into their days, and I'm not in their head. I try to be mindful of this when interacting with people. It means I frequently remind myself not to offer advice if someone clearly just wants someone to listen to them, although I can't say that I'm 100% successful at this. Part of my job is offering resources to other students, but I try to frame this in terms of, "these are some of the options I see for you; do any of those sound like a good choice for you? What would you like to do?" (Though not necessarily in that order.) I do this because it's always better if the student feels that he or she has an active role in the decision-making process, and arriving at a solution together builds self-esteem and problem-solving skills. On the other hand, if I tell my peers what to do about their problem, they're far more likely to reject it and feel resentful.

It's all about perspective, and agency.

To bring this back to my original point, the values and strategies I use in my life for assessing and acting on the world around me come from a set of biases that are specific to me. These are not the same values and strategies that someone even from a similar background and in a similar situation will necessarily have, and they come from a very different place from someone with different biases. There are generation, educational, racial, ability, and gender differences, to name but a few, and they all affect worldview.

Edit: What are your perspectives? How do they affect how you view the world? Have situations come up for you where you really noticed how differently someone else views things because of hir perspectives? [Feel free to answer any, all, or none of these, either here or in your own space. I'm just throwing some thoughts out and fishing for responses that might have an impact on either myself or others.]

[Apologies also for tangents/lack of cohesiveness, if they exist. I didn't outline first.]



*Without getting her permission, I'm not going to post either how I know her or her (first) name. If, at some point in the future, I get that permission, I will use it in posts at that time. I may come up with pseudonyms in the meantime, but we'll see.