Reveries from the seas moving inland

[sovay]

The thing that angers me most about the current wave of medical stressors is that in mid-September I felt as though my life was opening up again and now I feel it's slammed shut hard. The levels of pain and fatigue I am dealing with are beyond even my chronically ill norm. They are debilitating and I feel they must look unbelievable from the outside, as though I am narcissistically self-dramatizing or merely careless with my health—I got told again last night that I look great, which is of no use to me. This has been the kind of week where just making it to doctors' appointments leaves me wiped out for the rest of the day. I am actively worried about my ability to manage an out-of-town wedding this weekend. My work is suffering and I can't afford for it to. I can't stop moving.

It feels like this is all there is left of my life: the person who is uselessly sick and gets sicker. Everything else has to happen around the edges, wedged into the cracks. The most important thing about me is the medical shape I'm in. I don't like it. It is not how I think of myself. It is not how I want to be seen.

I managed to attend the book launch at the BPL for The Atlas of Boston History (2019). a_reasonable_man was one of the contributors; one of his collaborative plates was even used as an illustration of the process of putting the atlas together by editor Nancy S. Seasholes, who gave a lecture beforehand. I can't believe I didn't know about her seminal study Gaining Ground: A History of Landmaking in Boston (2003/2018) until last night; I just went around picking up information about this city of water we live in on my own time. I will want a copy. I will want a copy of the atlas, too, which is beautiful and sold out at its own launch party. Then I came home and worked until I literally fell asleep on the couch. spatch had to wake me to go to bed.

Tonight is my family's traditional Halloween party, now an institution of more than half a century's standing. There will be pumpkins.

Comments

[gwynnega]

I'm so sorry you're having to deal with such intense pain and fatigue. It's disheartening to have another setback after making progress. I hope things improve for you soonest (and I hope you enjoy the Halloween party).

[sovay]

I hope things improve for you soonest (and I hope you enjoy the Halloween party).

Thank you. It was a nice Halloween party and I spent much less of it running around than I usually do. I carved my traditional pumpkin with assistance from choco_frosh.

[thisbluespirit]

I'm so sorry it's like this at the moment - I hope it's just a nasty blip for you and that it improves again soon. ♥

[sovay]

I'm so sorry it's like this at the moment - I hope it's just a nasty blip for you and that it improves again soon.

Thank you.

[phi]

Oh man, the being ill or in pain while everyone else thinks you look just fine is the. Fucking. Worst. Sympathies. (I'm dealing with something similar except its 90% mental health and PTSD and only very little physical in my case)

[sovay]

(I'm dealing with something similar except its 90% mental health and PTSD and only very little physical in my case)

*hugs*

Sympathies shared.

[callunav]

I don't like it. It is not how I think of myself.

Yes. That's one of the hardest parts of chronic illness or disability, is the threat or reality of one's identity changing in ways one didn't choose and passionately doesn't want. It's brutal.

Pain is brutal. It's exhausting and infuriating and frightening. I'm sorry your life is like this right now.

[sovay]

Pain is brutal. It's exhausting and infuriating and frightening. I'm sorry your life is like this right now.

Thank you.

I have had illness change my identity, both suddenly and by attrition. I know that nothing is really stable, but I feel like I am running out of pieces of myself to lose.

[hamletta]

I so hope you'll get better -- or at least manageable. Sending support! <3

[sovay]

I so hope you'll get better -- or at least manageable. Sending support!

Thank you!

*hugs*

[moon_custafer]

Sympathies. Meat gundams are a nuisance.

I got told again last night that I look great, which is of no use to me.

I think the hospitalglam tumblr (don’t know if it’s still going) was at least partly about demonstrating that people can be seriously ill but not look it.

[sovay]

Sympathies. Meat gundams are a nuisance.

Thank you. I don't really want to be a disembodied intelligence; I have spent most of my life teaching myself that I don't live in my head. I just want a body that more or less works. It's been too much on the lesser side lately.

I think the hospitalglam tumblr (don’t know if it’s still going) was at least partly about demonstrating that people can be seriously ill but not look it.

I don't think I encountered this Tumblr, but that seems like a useful thing to demonstrate.

[moon_custafer]

I don't really want to be a disembodied intelligence; I have spent most of my life teaching myself that I don't live in my head

I sort of experienced being a disembodied intelligence yesterday— I’d missed one of my doses of pregabalin the day before, so I took three instead of two the next couple of times, and while my shoulder was completely pain-free, I felt a bit as though there was a pane of glass between myself and reality, or as if everything was shifted very slightly to the left. And at times I had to make a conscious effort to focus enough to talk, which was a little inconvenient at work.

[umadoshi]

It all sounds so frustrating and exhausting, and I hope so badly that things improve.

And I hope the Hallowe'en party is lovely and joyful. (And spooky, if that's the aim!)

[sovay]

It all sounds so frustrating and exhausting, and I hope so badly that things improve.

Thank you.

And I hope the Hallowe'en party is lovely and joyful. (And spooky, if that's the aim!)

It went well! I don't know how spooky it was, but there were a lot of small children and a lot of baked goods and a lot of pumpkins. We mulled cider.

[thistleingrey]

I hate the "But you look [fine|great|other positive thing]" thing. It's so irritating. (Who made the other person the arbiter of functional health?) I hope the party was lovely.

[sovay]

I hate the "But you look [fine|great|other positive thing]" thing. It's so irritating. (Who made the other person the arbiter of functional health?)

I don't think most people are very good at all at guessing how anyone is.

I hope the party was lovely.

Thank you. I think it was a good time! Many pumpkins were carved. I had nice conversations.

[thistleingrey]

I think it was a good time! Many pumpkins were carved. I had nice conversations.

I'm glad!

[rachelmanija]

I believe you on everything, 100%. Everything you're talking about is real and the fucking worst.

[sovay]

I believe you on everything, 100%. Everything you're talking about is real and the fucking worst.

Thank you.

[asakiyume]

I thought of you today when I saw pumpkins from Wilson's Farm for sale in the Big Y in Amherst. Did I tell you this last year? As I thought about telling you this year, I had a sense of déjà vu that usually means I've done the thing before.

[sovay]

As I thought about telling you this year, I had a sense of déjà vu that usually means I've done the thing before.

You must have told someone else last year, because you did not tell me! Thank you for thinking of me. I was at Wilson's earlier this afternoon, buying cider and pumpkins and tea lights!

[nineweaving]

It was a lovely Halloween party, as it always is. I am so sorry that this damned ill health is eroding you. All of us so wish you to be well, to not have to put all of your strength into fighting pain. You've bloody well had more than enough.

*hugs*

Nine

[sovay]

It was a lovely Halloween party, as it always is.

I'm glad. There are so many children these days!

All of us so wish you to be well, to not have to put all of your strength into fighting pain. You've bloody well had more than enough.

Thank you.

*hugs*

[brigdh]

I'm so sorry about your health. *hugs*

The books you linked sound absolutely fascinating!

[sovay]

I'm so sorry about your health.

Thank you.

*hugs*

The books you linked sound absolutely fascinating!

I really want to read them! I paged through a_reasonable_man's contributor's copy and the atlas looked terrific.

[niqaeli]

It is so awful when other people persistently fail to see your misery.

I hope things improve. <3

[sovay]

I hope things improve.

Thank you.

*hugs*

[vintagewitch]

I'm so sorry your chronic illness stuff is on the downturn. My chronic pain stuff has been worse than normal lately.

*tea and solidarity*

[sovay]

*tea and solidarity*

Thank you. Much likewise.

[selidor]

I was rereading some of Long Way to a Small Angry Planet over the weekend, which spends a lot of time contrasting human behaviour to that of various alien species, and it had me pondering interactions: for a species so intently focussed on assessing each other by appearance, people do a really terrible level of care at it a surprising amount of the time. I do hope things get better for you. May the party have felt helpful!

[sovay]

for a species so intently focussed on assessing each other by appearance, people do a really terrible level of care at it a surprising amount of the time.

. . . this strikes me as true.

I do hope things get better for you. May the party have felt helpful!

Thank you! It was a nice party.

[mrissa]

Solidarity on health stuff, yes, yes, oh yes. "I have strength for one thing today, and it is a doctor's appointment" is the sort of thing that makes me snap, "This episode was badly written," all too often, oh, all too often.

Strength to you.

[sovay]

Strength to you.

Thank you.

*hugs*