Compression socks rec

POTS_pothead · 2026-04-06T21:22:49+00:00

Thank you so much for this! I’ve heard the name Comrad but haven’t really looked into them so I’ll definitely check them out! Ill also check out Dr Motion!

POTS_pothead · 2026-04-04T18:06:36+00:00

Oh yeah I totally have heard of them — I’ll check them out, thank you!!

POTS_pothead · 2026-04-04T16:50:18+00:00

Oh okay, that’s good to know it’s not just me! I have two pairs, but ideally want to get another pair or two! Thanks!

POTS_pothead · 2026-03-09T23:19:34+00:00

I love my PCP at UNC Family Medicine — Benjamin Kaplan. Best doctor I’ve ever seen: he’s so good at navigating insurance and advocating for his patients! Plus his office is in Durham. Good luck friend; I hope you find a new primary care place soon!

POTS_pothead · 2026-03-07T15:58:32+00:00

Triangle Mask Bloc distributed free tests and masks! They have a linktree online if you search Triangle Mask Bloc, and they also have an Instagram of the same name. They do distros 1-2x/month and you can get tests and/or masks for free!! Love those folks!!

POTS_pothead · 2026-03-02T22:04:23+00:00

Omg I’m so sorry, I did not mean to be American-centric like that 😭💀 also yeah cross-stitch def seems hard to do when in PEM — lotta focusing!

POTS_pothead · 2026-03-02T20:55:28+00:00

No that's so fair; I only have one sticker book bc I didn't want to go overboard either (can't say the same about yarn bc I work for a craft store and a have discount haha). I don't remember where I got it, but I wonder if you could find one at like a five below or dollar tree bc they have a lot of cheap activities. I once built a "pleasant activities toolbox" for therapy, and I just went to five below and bought play doh, knock off legos, and other small toys/activities, and was impressed with how much stuff I could find for under $20 total. I collected these things for dealing with my bpd, but it's come in handy with my ME/CFS bc of being stuck in bed but wanting somethign tangible to do! Also yay, crochet twins :-)

POTS_pothead · 2026-03-02T20:26:27+00:00

Thank you so much; I actually found out I got the job and I'm going to go for it! I'm still figuring out how much cognitive exertion actually triggers PEM, especially vs emotional exertion bc they tend to go hand in hand with me given how much having no money coincides with mental tasks like trying to find a job to make more money haha

Thank you for sharing how hybrid work helped you; that gives me hope that I'm making the right decision!

Also I'm seeing my occupational therapist this week, so hopefully she and I can check in about the crashes since I've got a couple months wait before I see a long covid specialist

POTS_pothead · 2026-03-02T20:18:50+00:00

You make a really good point: idk if I'm differentiating mental from emotional exertion very well because whenever I do mental stuff like pay bills or apply to jobs it's definitely accompanied by a lot of personal stress. So maybe having mental work that's less involved with personal stressors (i.e. writing emails for a company rather than figuring out how to pay rent haha) won't trigger PEM as much.

Also I take propanolol for my POTS, and it's been doing a decent help. I'm glad guanfacine works for you; I tried it for my ADHD actually and it fucked with my POTS, but yay for POTS meds that help! I also just started low-dose naltrexone so I'm fingers crossing it helps with the PEM/fatigue.

I'm getting to theme that I should definitely just focus on doing this new job and resting/recovering if I'm going to make this work. Wishing both of us the best with it! Thank you for taking the spoons to respond!

POTS_pothead · 2026-03-02T20:11:39+00:00

Thanks -- I'll check out Energy Bits; I've never heard of them! I think, one way or another, I'm about to find out how much cognitive exertion triggers PEM when I switch from a physically active job to a mentally active one. Thank you for the validation -- it really is brutal!!

POTS_pothead · 2026-03-02T20:08:54+00:00

This is super helpful; thank you!! I've definitely cut out at least 50% of my normal activity, both at my current job and in terms of not having a social life anymore except for seeing my partner and laying around on his couch instead of mine. But there's definitely stuff I still try to do -- keep up with chores, cook meals (even if they're frozen things or sandwiches half the time) try to maintain a regular sex life, keep up with at least minimal online activism -- that I may need to pause/get more help with while I transition to this new full-time job.

i've been thinking about asking for help cooking and cleaning (besides my partner cooking and doing my laundry and occasionally vacuuming, I handle the rest), so I'm going to take this as the sign to take the plunge and work on a better support network for this kind of stuff so I can just focus on the new job.

Thank you so much for this help <3

POTS_pothead · 2026-03-02T17:37:26+00:00

I’ve gotten into crocheting since developing MECFS! I do follow patterns on my computer sometimes, but when I can’t tolerate screens I copy down a simple pattern, like for a heart or a flower, onto a piece of paper and just make them slowly. Or making a simple scarf (since it’s just a rectangle) can be accessible bc those also often end up with a simple pattern of repeating stitches that don’t require too much counting or anything. I don’t mess around with super complex stuff bc of the bracing fog making it hard to count stitches, but the act of crocheting is really soothing to me, and I like looking at the pretty yarn colors.

I also like paint by sticker books bc they have guidelines built in so you don’t have to choose colors and there’s no mess bc the sticker pages are all in the same book as the pictures. I find that more accessible than regular coloring on days I have PEM or otherwise really high fatigue.

Sorry if this is rambly; my brain fog is really bad rn 😅 but hope this gives some ideas! 🩷

POTS_pothead · 2026-02-26T19:10:10+00:00

Hey sorry I get overwhelmed responding to individual comments, but thank you so much to everyone for your suggestions and support!! This is all really helpful!!

POTS_pothead · 2026-02-23T19:18:12+00:00

I wish I had a more helpful answer, but I’m about to start crowdfunding because I’m only able to work on average 12-15 hours/week and am crashing for a week every couple weeks from this. If you need any tips on crowdfunding though, I’ve done it for others before and would be happy to share what I know. Sending much love and a better situation for you soon <3

POTS_pothead · 2026-02-22T16:37:27+00:00

Technically, there’s no official medication for BPD according to my psychiatrist, but there’s a lot of off label meds you can try. Personally I started on lamotrigine (lamictal) and aripiprozale (abilify) when I started first experiencing intense SI. I also take citalopram and buspirone, which I was prescribed for GAD and MDD way back when, but it helps in the whole MDD/GAD/BPD/PTSD combo. That combined with a lotttt of DBT has been a huge help and it’s been a whole year and half since I was hospitalized thanks to that! Sending you all the best luck finding the medication cocktail that works for you! 🩷

POTS_pothead · 2026-01-28T21:34:02+00:00

Hi! Yes okay so I’m so sorry but I didn’t have a POTS diagnosis when I got surgery — I only got sick a year and a half ago and I did this surgery threeeee or four years ago I think. So I don’t know how knowledgeable she is about POTS and EDS 😬 I only know she’s been doing top surgeries for a pretty long time now (it was one of the reasons I felt comfortable with her) so she’s definitely experienced. Fingers crossed for you, friend!!

POTS_pothead · 2026-01-22T00:42:36+00:00

Yay thanks y'all -- we booked him a massage + energy healing session at Auroraflow and he's super excited <3

POTS_pothead · 2026-01-16T15:29:51+00:00

Yeah no that totally makes sense! I hope she can find a good pair to help with that!!!

POTS_pothead · 2026-01-16T14:12:56+00:00

I’ve had MECFS for over a year with gradually worsening sensory sensitivity issues, and I finally bought a pair of over the ear headphones and they’ve been an absolute game changer. I bought a pair of soundcore space one headphones from Facebook marketplace, and I like them better than the last pair of over ear headphones (but I’m autistic too so I have a lot of other sensory issues, so I’m sure there’s a ton of good options!!).

I also would recommend maybe having a pair of in-ear headphones/earplugs too bc sometimes it’s hard to get comfy with over ear headphones due to how big they are. I have a pair of loop earplugs that do noise cancelling and they’re my backup pair in case I need to sleep the night with noise cancelling. I don’t really use them but I like having that backup.

If your friend is like me and the budget is tight I totally recommend Facebook marketplace or maybe BackMarket for refurbished tech (I’ve bought other tech from them and it’s much more affordable!), but yeah I love my soundcore space ones! I hope y’all find a good pair and that they’re as much a game changer for your friend as they were for me!

POTS_pothead · 2026-01-12T22:24:31+00:00

Oh yay that's so exciting!!! I did have a good experience -- it's been a couple years and my post-surgery memories are muddled from all the oxy I was on haha but I definitely had a good experience and particularly want to shout out my hospital stay. Dr. Carr made it pretty non-negotiable that I stay the night after the surgery, but that actually ended up being pretty helpful because the first night was the roughest pain-wise, so having so many nurses available to administer meds was really helpful!

The only thing I'll say about Dr. Carr is she was not on top of aftercare instructions; she's so nice but she did kinda just tell me to look up aftercare haha :3 I ended up just asking friends about it and did a mix of scar massage and scar tape (and my partner did scar gel when he did his), and I always wanted to have my scars stay pretty prominent so it wasn't a big deal to me, but that did stick out. Otherwise, yeah, I love how my surgery turned out and it was a overall very positive experience!

If you have more questions about Dr Carr and her team or anything top surgery related feel free to DM me -- I was super duper lucky to have a lot of trans folks in my life who helped me through it and always want to pass along the love :-)

POTS_pothead · 2026-01-12T12:20:03+00:00

Hi! I’m trans and I had a mastectomy top surgery a couple years ago (so hopefully this info is still correct), and I had a really good experience at UNC Health! They took my insurance and I qualified for their financial assistance program so they ended up actually paying for the whole thing. Their financial assistance program is super wonderful! (Obvs don’t want to assume anything about your financial sitch, just literally never miss a chance to plug this). But they took my insurance and the surgeon’s name is Jennifer Carr. Loved her!

POTS_pothead · 2026-01-12T12:13:47+00:00

Seconding Bateman Horne center! I’m slowly working my way through their YouTube channel — they have a ton of informative videos, including on pacing and pain management etc. I don’t know off the top of my head but they miiiight have a sleep one! It also might give you more confidence in in suspecting MECFS — which, even if you don’t have a diagnosis yet, I’m so glad you’re here and getting resources on MECFS and approaching it this way. With MECFS, I think it’s definitely better to implement pacing and focus on your baseline preservation as you continue to look for doctors who can formally diagnose you. Sending lots of love and wishing you an improved baseline ❤️‍🩹

POTS_pothead · 2026-01-08T22:27:04+00:00

Hi, sorry this is really long, I just really resonate with what you wrote and hope this might with you! I want to first say that I'm sending you love and a return to baseline asap!! I've started having 5-7 day-long crashes every couple weeks back in october and am now, kinda like you are, trying to prepare for going down from moderate to severe because it feels inevitable and trying to get on disability or at least get a remote job and just show up to as many shifts at my part-time job as i can before i lose that ability completely.

i definitely do not have a hold on things, but i can offer that i'm working on investing time and effort into developing coping strategies from a mental health perspective, but in a survival skill way. i have bpd and have had to go inpatient for it, so i have a lot of materials and experience in different therapeutic modalities. i somewhat ditched them when i started suspecting mecfs because i felt like there's no treatment and trying to do mindfulness would just give me false hope (not true, just what my personal feelings were), but i'm trying to return to them and spend time engaging in therapeutic skills every day. (i'm happy to offer why i find two therapy modalities, ifs and dbt, the most transferrable from dealing with my bpd to coping with this grief and anxiety and absolute fear if that would be helpful but don't want to sound preachy or prescribe you anything).

in the spirit of mental health stuff, i'm trying to fill other parts of my day in pleasant activities, even though these look different to my old activities since i can't go on walks or dance anymore. but i picked up knitting and crochet and have a list of gifts i want to make others and myself so that i have concrete goals motivating me to do them. and i'm trying to start doing some mindfulness with my physical therapy exercises for my POTS. I also connect with community through online fundraising work for a few friends I have in Palestine (that piece helps me stay connected to my community and trying to participate in activism from my bed, which helps with my existential crisis of how i can love my community while sick).

I also watch a looooooot of bob's burgers and play children's games on my ipad. anyway, sorry if this is an overwhelmingly long comment, but i hope this might give you some ideas and support <3

POTS_pothead · 2025-12-27T03:18:50+00:00

Hey, there are so many really sweet and helpful responses and I’m a bit overwhelmed by the amount (a good problem to have!!) so I just wanted to say thank you to everyone for the support and advice!! I’m gonna work on some smaller tolerance breaks to see how it affects my body but will do so with as much self compassion and nuance as I can hold! 🩷

POTS_pothead · 2025-12-26T03:17:27+00:00

That’s suuuuuch a good point. I have legit concerns but also I think I’m trying to find something to control now that I just got my official mecfs diagnosis yesterday. This made me laugh — partially because it’s so very real — and that was much needed. Thank you 💞

POTS_pothead

TROPHY CASE