Gift Miles Registry Update, & The Question of Asking for Help

Well. Apparently my U.S. Airways Gift Registry is not working! I had a really hard time finding support for it to, all there seems to be is an e-mail address. No matter, I actually found one I like a bit better, for United Miles. Here is the link:
Hope for M.E

I confess, I had some moments of wavering resolve earlier today. I had told me brother about it, and he said that he didn't think people would understand, which sent me down into that spiral of shame, followed by hurt, anger, and sadness. (It's not the fact that many people can't afford to help, that I understand, I think it's the fact that it seems like people won't think it's a worthy, that's what really hurts. I mean, I'm really sick, I'm about to be homeless, and I've been through hell...I know I'm not dying, but I'm certainly not living...and still, it's a fight every day I am alive...)

It's been years now that I've spent dealing with my health issues and the wreckage they've turned my life into, mostly on my own, and I've had to come to terms repeatedly with what seems to be the hard cold facts of the matter: most people just don't care. It makes them uncomfortable, bums them out, they're too busy, or worse, they think I'm a liar, that I could get better if I really wanted to, if I tried this potion, that therapy (and believe me, I probably have) went to bed early, exercised more, or just stopped thinking about it. (Tried those, too! Some even Against Medical Advice!) What they don't understand is, I've tried it all...I guess if they really knew me, they'd know what a stubborn, determined person I am. How much I wanted for my life and that I'd never give up without a fight, no matter what the diagnosis. They'd know I tried going back to work repeatedly, tried working from home, that I've researched like crazy, hunted down every resource I could find to get myself free or low-cost medical care and medicines, and just been to hell and back in general, just trying to survive. It didn't help that I seem to have lost about 50 Twitter followers since posting my link. (But then, there's a reason when I forgot my old Twitter password, I swore I would not focus on my health issues on my new one; I wanted an identity outside that of patient, so maybe that wasn't the right audience.)

But I think what hurt me most while contemplating all this was, that I think part of the reason people seem to get turned off or not take it seriously is that I'm asking for help for myself.I really think that's part of it...Maybe people figure if I was really sick, wouldn't my family and friends be doing everything they could to help me? Wouldn't they be telling people about it and wouldn't they have joined me in my efforts to spread awareness? (Nevermind that it's extremely difficult to make OR keep friends when you're this ill.) I know if it was my child, or even sibling, I'd be organizing my family into a team to do the Awareness Day walks & activities, be raising funds for research, just doing everything I could, but I guess not everyone's cut from that mold, and I have to say, at least my two closest family members do understand I am sick and offer me what moral support they can, limited though it may be. (While a third seems to have happily convinced himself that I am well enough that they can stick me with all their bills & problems and leave the country, but that's another story.) 
So I kind of get it, but I still feel like they do me a disservice by deliberately keeping my illness hush-hush and that this encourages people to form misguided beliefs... Maybe it's just me, but I would want to know if any of my family was wanting for basic needs...I'm not a secretive person by nature, so after years of being dead broke, scrimping and scraping for things like food, clothes, gas and medicine, it's surprising to me that they could plead ignorance.


I don't know why asking for help is such a shameful thing. So I do admit to feeling a bit raw and exposed for a bit there, even contemplated giving up. I'm still not sure if I want to actively pursue this, I was much happier getting my own miles, haha. Actually, I worked on that for a bit earlier, and I think it's what perked me back up. Plus, to be fair, I had a wonderful demonstration that there ARE people out there who care, however much of a freakish hermit I might be with my freakish illness that no one understands, I had some great people come over yesterday (after days of insistence) and perform the miracle of cleaning my kitchen (my most overwhelming challenge; try washing dishes with back problems, tachycardia, and blood pressure that drops when you're standing up and a nervous system that doesn't like heat!) AND they helped me pack up my mother's China. Ironically, I actually find it hard to accept help! (I still hate not being completely self-sufficient. Must be the first-born thing.) And it makes me squirm a little, but at the same time I am SO grateful... Being ill is so complicated! Aside from the physical, it can be a psychological wormhole, I swear. Maybe I'll give up on the miles registry. Maybe I won't.