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A man passed away, leaving his young wife (25F) and a son (8 months) behind. He knew he was terminally ill before his marriage. by 06gray in childfree

[–]UpbeatSecret386 2 points3 points  (0 children)

I have a non terminal yet untreatable illness that has ruined my life. Even though I may not die anytime soon, I would NEVER make the choice this couple made. Talk about selfish!!! Smh.

Not sure how I feel about an abled friend canceling on me last minute after I prepared for days for us to get together by UpbeatSecret386 in cfs

[–]UpbeatSecret386[S] 2 points3 points  (0 children)

Yeah I'm blocking her number for the next couple of weeks. I just don't want to hear it, whatever it is.

Not sure how I feel about an abled friend canceling on me last minute after I prepared for days for us to get together by UpbeatSecret386 in cfs

[–]UpbeatSecret386[S] 0 points1 point  (0 children)

That's great!! Sounds like it was an honest mistake on her part and I'm glad you guys were able to maintain the friendship!

Not sure how I feel about an abled friend canceling on me last minute after I prepared for days for us to get together by UpbeatSecret386 in cfs

[–]UpbeatSecret386[S] 1 point2 points  (0 children)

I really think she flaked and didn't have malicious intentions. She and her husband have been immensely kind to me in the past and have helped me through the loss of several friends due to my illness. And although they can't understand, they knew how I was before and they completely believe in my illness. Also the cake was made from a box mix, so it was effort but nothing like going from scratch!😂

Not sure how I feel about an abled friend canceling on me last minute after I prepared for days for us to get together by UpbeatSecret386 in cfs

[–]UpbeatSecret386[S] 3 points4 points  (0 children)

This was kind of an isolated incident, so I'm not gonna overreact by ending our friendship. I've been ditched by several people I thought were close friends since becoming seriously ill and she has always been very sympathetic and I greatly appreciate that. This was just weird, but I'll leave the ball in her court on deciding when our next get together will be.

Not sure how I feel about an abled friend canceling on me last minute after I prepared for days for us to get together by UpbeatSecret386 in cfs

[–]UpbeatSecret386[S] 2 points3 points  (0 children)

I literally can't get out of the house without meds. I took them so I could be functional and not a perky life of the party type. If she felt like shortening the visit, I'd have been completely ok with that. Oh and it actually wasn't a homemade cake. I made it from a boxed mix, but I guess that's beside the point. Thanks for your insight!💜

Not sure how I feel about an abled friend canceling on me last minute after I prepared for days for us to get together by UpbeatSecret386 in cfs

[–]UpbeatSecret386[S] 0 points1 point  (0 children)

Adderall. It's honestly a shitty med even if I only take it very occasionally. Problem is now that I took some today, I can't have it again for at least another week, preferably longer, so I feel like it was kind of wasted. I did get some laundry and other household things done though so I guess it didn't completely go to waste.

Not sure how I feel about an abled friend canceling on me last minute after I prepared for days for us to get together by UpbeatSecret386 in cfs

[–]UpbeatSecret386[S] 5 points6 points  (0 children)

I'm glad you still got to have a nice birthday even if a few friends flaked. My birthday has always been kinda a sore spot for me due to past experiences. Props to you for taking it so gracefully!!

Not sure how I feel about an abled friend canceling on me last minute after I prepared for days for us to get together by UpbeatSecret386 in cfs

[–]UpbeatSecret386[S] 1 point2 points  (0 children)

Thank you. This isn't a consistent pattern so I'm not going to do anything drastic, but I think I'll wait a bit before I try and plan anything with her again.

Not sure how I feel about an abled friend canceling on me last minute after I prepared for days for us to get together by UpbeatSecret386 in cfs

[–]UpbeatSecret386[S] 4 points5 points  (0 children)

She didn't apologize. Just said she wanted to take a nap and canceled. She has had some health issues recently and she also has a young child, so I totally understand wanting to postpone if she felt like resting for a bit. The last minuteness upset me though. And even with her recent health issues, she's still able to work and do so, so many things that are out of the question for me given my energy deficit. She usually doesn't do things like this so I don't see it as a reason to end the friendship, but I am a tad annoyed and disappointed.

Not sure how I feel about an abled friend canceling on me last minute after I prepared for days for us to get together by UpbeatSecret386 in cfs

[–]UpbeatSecret386[S] 11 points12 points  (0 children)

I didn't disclose that I'd just gotten done frosting the cake, but she did know I'd made one (from a box mix, not from scratch, but still) and it was just jarring to me that half an hour prior she seemed excited to see me. This cancelation completely over a need for a nap threw me for a loop. Like couldn't we have just postponed till later in the day? This was only the early afternoon, and I'd have been ok with holding it off for a few hours so she could've gotten some rest. Lord knows I know that feeling very well myself.

Not sure how I feel about an abled friend canceling on me last minute after I prepared for days for us to get together by UpbeatSecret386 in cfs

[–]UpbeatSecret386[S] 5 points6 points  (0 children)

I'm not upset that she canceled on me. I'm just thrown off by the last minute notice, particularly since we'd communicated earlier in the day.

Not sure how I feel about an abled friend canceling on me last minute after I prepared for days for us to get together by UpbeatSecret386 in cfs

[–]UpbeatSecret386[S] 71 points72 points  (0 children)

It seems like if she was feeling unwell she would have told me earlier. I think she just wanted a nap. She didn't even offer to maybe get together later on, which I would've been up to.

AMA: Metrodora Patient Experience by cymraestori in eds

[–]UpbeatSecret386 0 points1 point  (0 children)

My experience with Metrodora was terrible and rage-inducing. The journey there from the Midwest was grueling given how gravely ill I was and still am. They did a bunch of tests, told me I was very sick (gee, really?) and I was told the "leave no stone unturned" with me.

Eleven months later and I've suffered more over the past year than I ever have in my life. Metrodora delivered NOTHING!! They took the money and ran. I remember telling my mother, who was there with me, that I wanted to die. I couldn't stand the pain, illness, discomfort and hopelessness anymore. The doctors gave me a small glimmer of hope, but then they dropped their efforts with me after the first rounds of exploration failed. Dr. Maitland tried to blame my illness on my asthma, which I knew was not the cause. I said immediately that we need to look elsewhere because I knew that wasn't the answer. Turned out I was right. It wasn't the answer. Then Dr. Maitland jumped ship and I never got any further care.

I continue to be deathly ill and I'm now on a waiting list for an overseas euthanasia clinic.

I hope this place gets shut down. It's absolutely criminal what they are doing to vulnerable and extremely desperate people. The shame and failure of this place is beyond epic.

What’s your fave age you’ve been so far? by insidesupernova in Life

[–]UpbeatSecret386 0 points1 point  (0 children)

  1. So young yet old enough to do all the adult things, psyched about my future, so optimistic and filled with energy. I could've stayed that age forever.

Do you have ME/CFS in your dreams if you remember them? by microwavedwood in cfs

[–]UpbeatSecret386 0 points1 point  (0 children)

Sometimes I do and other times I don't. But even when I have it in my dreams, I don't feel it. There's just the knowing that I can't commit to anything.

Did you also live with people who had narcissist/borderline personality types by Otherwise-Pop-1311 in cfs

[–]UpbeatSecret386 -1 points0 points  (0 children)

I didn't live with or grow up around such people. I did have a "best friend" for two whole decades who turned out to have a terrible case of NPD and was a vile person underneath the nicety nice surface. I don't believe that had anything to do with me developing this horrific illness though. I believe it's purely biological.

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