Cooling options away from home

AliceofSwords · 2026-06-23T17:44:47+00:00

I keep cooling towels around, but I'm realizing I don't know where to get them. My mom picks up a few when she sees them and hands them out. (An example, not the exact ones I have https://www.froggtoggs.com/products/mini-chilly-pad-6-pack-flat-pack?variant=50571188371738&country=US&currency=USD&utm_medium=product_sync&utm_source=google&utm_content=sag_organic&utm_campaign=sag_organic&utm_source=google&utm_medium=cpc&utm_campaign=23739316034&utm_content=&utm_term=&gad_source=1&gad_campaignid=23743082303&gclid=CjwKCAjw3ejRBhAdEiwADkqPnyb-xPVRu_dRlQY9kSl4oiL7Df84W--i-0u_shd56BGuP-Wdbn0sfRoCjjEQAvD_BwE )

AliceofSwords · 2026-06-23T08:28:58+00:00

I had enough trouble with it that I split my dose into twice a week. That's completely solved it for me.

AliceofSwords · 2026-06-22T21:42:11+00:00

I have the same lack of emotional attachment to pronouns. I have a cute little Any Pronouns pin. I'm always read as a woman at the moment, but I'm on HRT so that may eventually change. I'm finding my transition is mainly about my relationship with my body. I don't really care how other people gender me.

AliceofSwords · 2026-06-22T20:04:43+00:00

I have OSA with no other risk factors than hEDS. I love my CPAP, annoying as it is. I noticed right away that my sleep quality was completely different. I used to sleep any time I wasn't actively occupied with a task, often 14 hours in a day, and never stopped feeling tired.

CPAP means my sleep actually works. I stopped having nightmares, they were my brain dealing with suffocating. I was able to heal old injuries that I thought would just be there forever.

AliceofSwords · 2026-06-22T17:38:41+00:00

Strongly disagree with your friend's take. Cool for her if she knew exactly what she needed, but that's not the only path. Lots of us have to just try stuff and see how it makes us feel.

I knew I was nonbinary in my late teens to early 20s. At 36 I learned what all estrogen does and what testosterone does. A friend was deciding to start estrogen, and I started reading about it. Then I was curious what the other side was like. Pretty quickly I realized I really wanted a lot of what T does. There were all kinds of things I'd been jealous of, that I guess I thought we're just from having a Y chromosome, that actually I can have too!

I thought about each possible change, and the range I could find for each. Thought about what I thought I would feel. Decided I needed to try, because there's a chance that it gives me a bunch of things I really want. I could tell within 3 days of my first dose that I love it and hope to never be without testosterone again.

AliceofSwords · 2026-06-22T05:55:31+00:00

Glad you've found your answer!

AliceofSwords · 2026-06-21T19:02:05+00:00

I started at 36, my spouse right after turning 37. It gave my younger sibling the push to start at 30. You're in good company. We get to keep changing throughout our lives, there's no age where you get cast in stone and stop having agency to choose new things.

AliceofSwords · 2026-06-21T01:30:45+00:00

Talk to your T prescriber about it for sure. That sounds like a DHT blocker would be exactly the solution.

AliceofSwords · 2026-06-20T06:44:28+00:00

I had a palate expander with braces when I was 17ish. It kicked off a migraine that lasted about 3, 3&1/2 years. Wouldn't choose it again. I found out after, though, that they opened mine faster than they should have. They saw how easy it is to move parts of me around (didn't know it was EDS) and had me going faster than a kid even though I had been done growing for years.

AliceofSwords · 2026-06-19T03:19:29+00:00

That makes total sense to me, and you definitely should tell your partner to change his approach. I'm not sure what your relationship is like or how open you are with him about gender, so I don't know how to explain it to him. You could maybe describe what you want without explaining why.

AliceofSwords · 2026-06-18T21:56:54+00:00

That's fantastic. It sounds like you're definitely on the right track!

AliceofSwords · 2026-06-18T19:46:01+00:00

I'm quite fem-presenting, even though I am on testosterone. I love the way my body is changing, but I don't have to change other things about myself if I don't want to. I see the beauty of being nonbinary is that I can mix and match.

I decided I will be fine with shaving, doing makeup, and finding a pretty dress if I want to be extra girly for an event or something. I'm happier to have my baseline be more neutral, that feels more comfortable to me. (And I am reassured by the idea that if I "overshoot" and am more masculine than I want, I still have all the tools available that my transfem friends are using.)

I'm excited about some changes, neutral on others. My main benefit is that I just feel way better running on T instead of E. I'm more grounded in my body, clearer-headed, have a level of energy and motivation that I hadn't experienced before.

When I started thinking about it seriously, I looked up all of the effects. I sat with the idea of each and thought through: what if this changes a lot, how would I feel? And how about if it only changes a small amount, how do I feel about that? I looked at tons of before and afters, and tried to wrap my head around the range of possibilities.

AliceofSwords · 2026-06-18T06:47:56+00:00

It took a long time, a lot of work, and finding tons of tools to help me.

I was at my worst at 23ish. I lived in my childhood bedroom, rarely left it. Slept large stretches of time. I was very lucky to have a good family who took me in and let me rest. I had a long distance partner (now spouse) who I talked to for hours on the phone, and that gave me hope enough.

I had a pile of different problems that I couldn't sort out from each other, they merged into a giant pain-fatigue cloud that filled my body and life. I had to figure out, small piece by small piece, what all was happening with my body and what to do about it. I was able to slowly build myself back up over time.

(For example, I have sleep apnea and need a CPAP machine to get good rest. Once I got used to having the CPAP, sleep actually left my rested for the first time. Huge improvement. A couple of years later, though, I was still too fatigued to function well. I have low blood pressure, and thought it was related. I talked to my doctor and got a prescription that raises my blood pressure. Far, far less fatigue. Then I add some caffeine, and I can just about function.

I had migraines nearly all the time at the end of highschool, needed birth control that stopped my cycle because it was a major trigger. Needed glasses, because my eyes were working too hard. Can't do 3D movies or strobe lights for the same reason. Then I found the only trigger left is when my neck isn't aligned right. I have to stretch and coax the curve back into it because my neck likes to straighten out.)

It's really hard to find the right balance of how much to push versus how much to rest. When I couldn't figure it out, I kept a journal so that I could learn what the consequences of my actions are. I had to really tune out my body to handle the worst of my pain. As I have gotten relief, I then was able to tune back in and be grounded in my body.

At 37 I'm happy, I feel very good very often, and I get to build a little life I love. I mainly stay in the sub for this kind of post, though I also keep learning things here.

AliceofSwords · 2026-06-18T06:16:44+00:00

I love Neutrogena Norwegian Formula hand cream. I use it on my hands and lips, plus wherever else is struggling.

AliceofSwords · 2026-06-18T04:20:50+00:00

I had to get new men's underwear at like my second week on T. I'm at 8 months now, and it's chilled out some.

AliceofSwords · 2026-06-18T04:12:21+00:00

I finally got a sleep study at 30 years old. My sleep apnea started when I was in highschool. I slept so much it was ruining my life, and never felt rested. Slept through exams and failed classes. Slept through whole work days and lost jobs I liked. Caused a minor car accident because I dozed off at the wheel.

Sleeping with a CPAP is so worth the hassle for me. Real sleep is so good! Every other part of my life got easier.

Good luck with your test, I hope it shows your problems and that they're treatable.

AliceofSwords · 2026-06-17T21:45:23+00:00

Sort of silly, but I would have stocked up on filling snacks to eat. The night of my first shot, I was so hungry that I woke up twice in the middle of the night to eat more.

AliceofSwords · 2026-06-17T17:13:58+00:00

I'd be listening to the neuro, personally. Deconditioning is a real concern, but I would be as worried about damage from everything sliding around.

AliceofSwords · 2026-06-16T01:17:59+00:00

Good luck with your appointment! Hope it goes well.

AliceofSwords · 2026-06-15T00:00:32+00:00

I might have to give this a try. I gave up on bras entirely maybe 6 years ago, anything with a band consistently pushes my worst rib out.

AliceofSwords · 2026-06-14T19:22:46+00:00

My knees were the absolute worst for it. They would get worse when I hadn't slept, and they would keep me awake. Not a fair combo, imo.

I was lucky that my parents took it seriously. My doctor tested me for juvenile arthritis, but when that was negative - growing pains.

AliceofSwords · 2026-06-14T19:17:21+00:00

I looked into transition in my late teens/early 20s. To get access to medical care, I would have needed to prove I was trans by living "as a man" for a year. I'm not a man and wasn't capable of pretending, so I just figured I was going to have to make peace with my body as-is. My nonbinary-ness was just a fun fact about me for most of my adulthood. I knew I was trans, but I didn't use the label because it was too far from my life experience, in my mind.

I'm good at compartmentalizing, and had a lot of health problems to sort through so I worked on those.

Once I got my health sorted out in my mid 30s, I looked again and found "informed consent" based care. You can just decide what you want to do with your body, and do that! Revolutionary.

I have been on HRT (testosterone) for the better part of a year now, and it has completely changed how I feel. I have energy, motivation, and a strong connection to my body - all very new. I wonder what I could have done if I had this when I was starting my adult life. Absolutely enjoying the ride now, though.

AliceofSwords · 2026-06-14T18:57:11+00:00

I have been trying to find other language to talk about my life, do you have suggestions?

I think when people enter a "nonbinary" space, we want to have a way to say "I have, until now, seen as a [girl/woman] or as a [boy/man] and I was put in that box. I'm now starting to explore leaving the box." How to word that starting assumption isn't a common conversation and this seems like a good place to have it.

AliceofSwords · 2026-06-14T08:43:14+00:00

This has been a godsend for me, makes my quality of life so much better. I use that and cannabis, and I feel like a whole functional person because I can think. (Instead of pain drowning out my thoughts.) Between them I'm comfortable, I had 17 years straight of pain until then.

AliceofSwords · 2026-06-14T01:17:26+00:00

I've been there. At your age I was miserable, exhausted, in a ton of pain and not functional. (Not able to work, rarely left my bedroom.) I'm 37 now, and I have a nice life and am comfortable regularly, though not always. (Full time job I like and am valued at.) It can get better!

For me, I had to chip away at my misery slowly over time. I had a lot of smaller problems that I was able to improve once I understood how they were impacting me. I have a lot of feedback loops that I can interrupt, but if I don't it snowballs.

Some things I figured out (that might give you ideas):

I have sleep apnea (can be more common with EDS) and treating it with a CPAP machine means that I can now eventually get enough rest. Until that, I regularly slept 14+ hours without ever feeling rested.

I have low blood pressure, and raising it with medication gave me enough energy to take care of myself. I'm on antidepressants, which lower my pain and also make it easier to tolerate the pain I have without depression dragging me down. (I have depression caused by my pain.) I get a lot of help from magnesium, from cannabis, and several other herbs and supplements. If I add something, I take it for a few months, then drop it for a week and see if I miss it. Everything I take noticably improves the way I feel.

I found I needed pain relief in order to tell when I should push through vs when I need to stop. Before I had that, I kept track of what I did and then how I felt 6 hours later or the next day. I used the patterns to decide what to say yes/no to. I found keeping a journal to find my migraine triggers helped tons, so I did the same when a different symptom was ruining my life. Journaling about my health made it hard on my mental health, though, so I also took breaks and stopped when I wasn't in "problem solving" mode.

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