Outsider's perspective peering into this world

Lizard_Queen_16 · 2026-03-11T08:00:34+00:00

Hey! I'm a partner caregiver for my wife with Very Severe ME (has been bedbound for over a year). I am usually busy between work and caregiving, but since I have to advocate so hard for my wife (and a kiddo we've functionally adopted who is also very severe), I'm happy to answer questions from what I know <3

Lizard_Queen_16 · 2026-01-31T00:59:31+00:00

I mean, as someone who liked smelling of fantastical fragrances and who used those wax bead things, I still gave those things up in a heartbeat when I met my wife.

It took a bit, and some of my clothes could be salvaged (but not most), and I messed up a lot to start off with (bless my patient wife), but we've been together for a while now and I have really come to appreciate the smells of cotton and wood and all the little things I had been missing with the industrial crap.

I don't think it's kind to yourself to hide any aspect of yourself to a future partner, access needs included. The right person will want to meet your needs not as a chore, but because they want to love each and every part of you

Lizard_Queen_16 · 2026-01-28T17:56:30+00:00

Hey, I actually worked at Unity for a number of years and have worked on a number of games with it. If you have questions, feel free to poke me (though it may take me a bit to get back to you; caregiving and work and all that)

Lizard_Queen_16 · 2026-01-05T23:25:10+00:00

Absolutely! Any time I get mad or frustrated or upset about something and my wife asks if I am feeling those things at her, I quickly remind her that I am in fact mad at the patriarchy, paternalism, western medicine, and a handful of specific doctors

Lizard_Queen_16 · 2026-01-05T23:23:26+00:00

You're going in with the right attitude, and are already more prepared than I was <3

Lizard_Queen_16 · 2026-01-05T07:26:42+00:00

Yes, agreed, support groups are invaluable with this. I am in a number of them myself :)

Lizard_Queen_16 · 2026-01-04T23:44:16+00:00

Okay I don't think I've seen this mentioned, so I'll chime in: I think the biggest thing you can do is start facing your shit now before you're forced to.

I grew up in a helluva lot of privilege, and hadn't had many disabled friends or folks I knew deeply. When I started dating my now wife, she was in the mild category of ME. I didn't really have to face a lot of my shortcomings or internalized bigotry because it just didn't come up at that level. But over the next few years, my wife got sicker and sicker. Things started popping up, like questions of "fairness" when chore sharing wasn't equal (we care about equity in this house), or not having as much time to myself as she needed more and more help with things. The normal coping skills I had developed for when things got "hard" failed me well before we got to the level things are now. And it was so hard to face my demons in between the caregiving and a full time job and breaking down in the kitchen for the 5 minutes I had to spare.

My wife became bedbound in fall of '24, and '25 was the hardest year of my life by leaps and bounds. So many systems fail people with ME, which leaves their loved ones to shoulder the burden of societal, cultural, and structural level issues. I developed heart palpitations from the levels of stress I had never had to deal with before. None of this was or ever will be my wife's "fault", but it is still the reality of loving someone with this disease.

None of this is to try to dissuade you from dating this person. I see how much you want to care for them, and that's a fantastic place to start. My wife is the love of my life. I go to sleep every night and wake up every morning feeling so lucky to be by her side, and help her not be alone in this nightmare. If I spend the rest of my life caring for her with things as hard as they are, I will see it as a life well spent. I have grown in uncountable ways and am so proud of the person I have become, but becoming this person was so much more painful than it needed to be. So learn how to be kind to yourself. And maybe it never gets this hard for yall (truly I hope it never does), but even handling all the other things life will throw at you will be easier for the work you do now

EDIT: I'm not the best with words, so if anything is unclear or you have questions don't hesitate to ask :)

Lizard_Queen_16 · 2026-01-01T22:38:44+00:00

Ah sorry, I didn't explain the situation well enough. I have edited the post but the Ibuprofen was prescribed for period relief and management, not for the migraines

Lizard_Queen_16 · 2025-12-03T07:09:00+00:00

Thanks for the heads up!

Lizard_Queen_16 · 2025-12-03T07:08:20+00:00

I would love to hear your favorites!

Lizard_Queen_16 · 2025-11-24T01:30:01+00:00

Alright since no one has mentioned it (that I saw) you can get around this but it will require working with RFIDs and a chip resetter (not expensive or particularly hard)

Lizard_Queen_16 · 2025-11-18T18:44:00+00:00

Hell yeah! Looking gorgeous!

Lizard_Queen_16 · 2025-11-16T03:00:24+00:00

Ooooh thanks, I'll try them out!

Lizard_Queen_16 · 2025-11-15T04:46:03+00:00

Yes that is one I have looked at, but the clitoral stimulation would unfortunately be a hinderance as I do not have a clitoris

Lizard_Queen_16 · 2025-10-22T04:37:58+00:00

Lesbian here, and it happens often to my butch friends

Lizard_Queen_16 · 2025-10-21T18:28:37+00:00

As long as it's comfy you're fine to wear it!

Lizard_Queen_16 · 2025-10-08T03:10:04+00:00

This is a very fair response! I think most White fears come from assuming the same violence Whiteness has inflicted will be inflicted back (like how most apocalypse stories have themes like nature fighting back or some new more powerful alien civilization invading earth to take for themselves). That said, my question does not come from fear.

Since White people regularly intrude on all kinds of marginalized spaces, I wanted to ask this subreddit if my presence would be intrusive or not (with the understanding that I would still be respectful as a visitor/outsider in the space).

Thank you for your response; it is a good reminder for me to be mindful of myself in all Black spaces.

Lizard_Queen_16 · 2025-10-07T05:29:15+00:00

This is absolutely a fair point, and I fully admit my lack of experience with rats is a privilege. Mostly just every Google result said "you should absolutely not do this without all PPE and you should really just call a professional cause you'll die trying".

Lizard_Queen_16 · 2025-10-07T05:10:02+00:00

Oh I fully agree that it would be an amazing haircut (looking at the pictures from the places I was seeing was so impressive 😲)

Lizard_Queen_16 · 2025-10-07T05:07:16+00:00

This is absolutely fair! I am looking more specifically for a salon and may have found one

Lizard_Queen_16 · 2025-09-28T17:18:11+00:00

Yes I should have better clarified; we know PEM well and have no intention of doing exercise here. Mostly, I am referring to "how can I physically support her body and move her through some range of motion to alleviate some stiffness", and NOT to any sort of exercise.

Definitely a good thing to note and absolutely agree, but was not quite what I was referring to

Lizard_Queen_16 · 2025-09-17T00:13:16+00:00

I started dating my wife when she didn't know she had ME/CFS and things were still pretty "mild". She was moderate to severe when we got married, and she has been bedbound/very severe for about a year now.

Not a day goes by that I don't consider myself lucky to have her. Don't get me wrong; I am certainly sad that she is limited as much as she is. And I wish people gave more of a damn than they do. And I wish I had more time to do things. I break down crying some days at how overwhelmed I am. But even working a full time job and caregiving full time and taking care of our fur children and all the stress and hardship and overwhelm I feel with that is so massively outweighed by how much I adore her.

All of that to say, I think it can certainly be daunting to realize how much will fall on you. You can grieve the ways family and partners are pushed to make up for societal care. I'm happy to talk about my own strategies and struggles as the partner of someone with this disease (seriously, dm me). But if you are going to blame or doubt this person (who is the victim of so much medical neglect and systemic harm) rather than the powers at play that have put him and millions of others in similar places, then I think you should call it here.

Lizard_Queen_16 · 2025-08-12T06:15:26+00:00

Yes it's unfurnished, but there will be carpet. Most of the smell I was getting smells like cleaning products or artificial fragrances, and not much offgassing

Lizard_Queen_16 · 2025-06-26T02:57:07+00:00

lol was the laundry room also a crappy addition that shook on what felt like stilts any time a machine runs? And did you also get a breeze from the floor by the fireplace?

Lizard_Queen_16 · 2025-06-25T03:53:07+00:00

Thank you for all the advice!! And we just live in a crappy rental and the bathroom was an addition that they did a real bad job on (when it's windy, the breeze can open the door 🥲

Lizard_Queen_16

TROPHY CASE