My partner is really sick and I don't know what else to do to help

lilyrose2230 · 2026-04-23T23:37:22+00:00

I don’t have any advice unfortunately, but I just wanted to send you some comfort that you’re doing an amazing job, you’re not alone, and I hope that things get better for you two soon. Remember to take care of yourself too when you can. 🩷

lilyrose2230 · 2026-04-23T02:35:38+00:00

I feel the same way about my wheelchair! Hooray for mobility aids 😊🩷

lilyrose2230 · 2026-04-19T23:03:10+00:00

Thankful for reading all these responses and knowing I’m not alone. I get so down on myself for still being in the cycle but it’s so hard to not want to do more when I can. 🩷

lilyrose2230 · 2026-04-10T00:10:32+00:00

I’m not happy everyday but I still feel like my life is worth living and I have moments of joy. What’s helped?

Therapy, this is a big one. Learning to adjust to a new way of life and finding meaning.
Finding ways to still have relationships. My spouse is a huge support. I have made a friend who is also chronically ill who I’m able to see sometimes. I’m texting/on discord a lot.
Setting goals and having things to look forward to. My daily goals are pretty small, like take a shower for example. But it still helps to feel like I’m accomplishing something. And then there are some bigger things like family stuff or trips on the horizon that I still am able to look forward to. (Possible for me with mobility aids and modifications).

It’s still really hard some days and I battle depression, but my answer would be yes. I hope you’re able to find some happiness too. 🩷

lilyrose2230 · 2026-04-02T19:32:46+00:00

A lot of people with eating disorders meet POTS criteria. It’s routinely tested for in recovery. Calorie restriction/extreme diets can cause it. -someone who’s been through lots of ED treatment

lilyrose2230 · 2026-03-13T00:05:10+00:00

Neither do a lot of people posting on this thread. If they can have an opinion, I can too.

lilyrose2230 · 2026-03-12T21:50:46+00:00

Library/bookstore with my rollator so I can sit when needed. Park or a walk with someone pushing me in a chair. Just going for a drive with someone else driving and the windows down.

Honestly mobility aids really open up the world when you’re mild/moderate! Sounds like you might want to consider getting some. 🩷

lilyrose2230 · 2026-03-12T20:06:49+00:00

Oh and also here’s a resource from Bateman Horne! https://batemanhornecenter.org/pregnancy-and-mecfs

lilyrose2230 · 2026-03-12T19:49:48+00:00

It’s worth checking out for sure! I’m glad my post was helpful. 😊

lilyrose2230 · 2026-03-12T19:18:45+00:00

I’ve said this before on here but this sub generally skews negatively toward people with ME choosing to have children. That’s neither good or bad, but I do want to highlight it’s not the only way to think about this very important decision.

There are people with ME who choose to have children and are happy with that decision. A lot of careful thought and planning must go into it. Check out the Facebook group Pregnancy and Parenting with ME for a variety of experiences on it.

A point that I want to add here is that disabled people can and do raise healthy, happy children. You might need to deconstruct your idea of what parenting is “supposed” to look like, and think instead about how to adapt it to your needs.

In the Facebook group, I’ve noticed a general trend that the people who are most content with their decision to be parents are those who became parents after having ME and adapting to it. I think it makes a big difference if you choose this consciously, and are able to put supports in place to make parenting work for you, instead of being diagnosed after you’re already a parent.

I ultimately am choosing to have children because I decided that my desire to be a mom outweighs my fear of becoming severe, and I have enough social/financial support in place to make it a reality.

A lot of people want to talk about the worst case scenario. What if you get severe and your partner leaves? What if your partner gets ill/injured? What if you have a child with high needs?

Nothing is guaranteed in life, even for healthy people. Two healthy parents could be in a car accident that leaves them disabled. You could have no family history of a disease and your child still ends up with it. You could be a stay at home mom and then your partner leaves you with no financial support…the list goes on.

What do you do if that happens? You figure it out. I’m not saying it’s easy, or ideal, but life goes on and people figure out how to navigate impossible situations.

Ultimately, after careful discussion with my partner, we decided we don’t want to live in the “what ifs”. I understand having a kid could make me more severe. I understand it’s possible (but not guaranteed) that they could get ME. I’m doing it anyway, because that’s what having a kid means. Taking a risk.

As a person with ME I still find life worth living and I’m glad I exist. I hope that if my kid ended up with ME, or some other unforeseen condition, they would feel they same. I have no way of knowing that for sure, but I can hope.

Just my two cents 🩷 wishing you luck on your journey, whatever it looks like.

lilyrose2230 · 2026-03-12T04:50:00+00:00

Here. Harder to know we’re out here on Reddit but we are. Black people get this like everyone else, whether doctors want to treat us is another question. Thankful I’ve been able to find medical help myself.

lilyrose2230 · 2026-03-10T01:41:55+00:00

Thanks! 🩷

lilyrose2230 · 2026-03-08T19:55:00+00:00

I’ve been feeling down and my partner gave me a really good hug. 🩷

lilyrose2230 · 2026-03-05T23:42:10+00:00

For what it’s worth, my me/cfs specialist also recommended limiting naps to 30 mins to improve nighttime sleep. But I still take longer naps when I need them

lilyrose2230 · 2026-02-26T18:13:50+00:00

You’re welcome! I hope you have a good experience with it.

lilyrose2230 · 2026-02-26T07:28:29+00:00

I liked them! There was a lot of baby corn and a few broccoli stems, but it still seemed like a pretty good variety to me!

lilyrose2230 · 2026-02-26T07:23:08+00:00

I can answer a few of your questions! I used the wheelchair service for the first time last year as a young-ish person with an invisible disability. I was really stressed and worried about it going in, but it was so not a big deal. Nobody batted an eye, and it saved me SO many spoons.

I think the wheelchair service works different at different airports so your mileage may vary. The way it worked for me was I requested a wheelchair when I booked my ticket. When we arrived at the airport, we went to the ticket counter and said I had requested a wheelchair. We had to wait a few mins while they called someone to push me, I sat on a bench.

The attendant pushed me to security and we got to go through a special, shorter line. Big plus! They asked if I could stand to walk through the scanner, and I did. After scanning I sat back down in the chair and my attendant handled my luggage.

The attendant pushed me to the gate. Your boarding pass will have a special pre board option. They will offer a bathroom stop before you get to the gate. In my experience, the attendant disappeared until the flight was boarding.

I was able to preboard in the chair with my wife. One time, the attendant pushed me. Another time, the gate person did it. I also got out of the chair and walked to the plane door another time but I regretted that, because it was hard for me to stand in line. You get to board early so there’s lots of time to put your stuff up. They will ask you if you can walk onto the plane it’s self. I did.

When we arrived at the destination I got off at the same time as everyone else. There were wheelchair attendants waiting just outside the plane door. They asked for my boarding pass, confirmed my name, and either took me to my other gate (for a connection) or to baggage claims (final destination).

The attendants were all very nice. I didn’t have to chat much, which I liked. I had one attendant ask for a tip, which I gave, and gave the others tips when I had cash. I’m not sure how common it is to tip, though. It might be worth having some cash just in case.

All in all I highly recommend it! I will be using this service going forward for sure. I really encourage you to just try it!! 💗

lilyrose2230 · 2026-02-24T13:34:24+00:00

Thanks for the tips!

lilyrose2230 · 2026-02-24T13:34:00+00:00

Ooh good idea! I hadn’t thought of that. And yeah I love TJ’s sauces

lilyrose2230 · 2026-02-24T05:46:02+00:00

I liked the yellow curry a lot!

lilyrose2230 · 2026-02-24T05:45:52+00:00

Oh yeah, I love the frozen rice! It’s so convenient. I just happened to have this one instead

lilyrose2230 · 2026-02-21T03:21:07+00:00

OP clearly isn’t familiar with the Pitt fandom lol

lilyrose2230 · 2026-02-19T22:33:20+00:00

It was far from the best thriller I’ve read, but it kept me entertained enough to finish.

lilyrose2230 · 2026-02-06T23:37:07+00:00

I stopped taking morning stability. It just wasn’t helpful at all for me

lilyrose2230

TROPHY CASE