I'm feeling a little blue right now. I feel like I have very little support at all, at least on the home front. Don't get me wrong, my friends and family aren't bad or necessarily negligent, it's just that they know next to nothing about my condition. They don't understand, hell *I* barely understand. But I feel like I can't get them to even close to my level of understanding. I feel demonized. I feel like I'm better off talking to a brick wall. I have difficulties doing even the most mundane tasks and no one attributes it to my condition. I can't clean like normal people. 5 minutes of bending to pick stuff up and I'll need to lay down. For a while I tried sitting in the floor and cleaning areas and then scooting to another, lather, rinse, repeat. It takes ages that way. Mainly because I don't like "straightening", it needs to be just right. I can't do it all. I can barely do "it" at all. I do alright as long as I don't have to stand for long periods or bend repeatedly but it's hard. I need help doing it and that frustrates my husband. He feels I'm just being lazy and that my condition isn't that bad. See what I mean, he doesn't get it. He says, "You're a stay at home mom, this is your job". "How about I stay home and you go get a job, then I'll clean it all". Nice idea, in theory. Only I can't. But he doesn't understand that. I'll admit by broad definition, I am lazy. But not just for the sake of being lazy. I'm lazy because the activity required to not be labeled as lazy would wear me out, if I could even do it without passing out or falling over with weakness. Then he asks how I'm able to read or get on the internet on my cell phone or watch movies. I'm not sure if you can find what they have in common so if not, allow me. None of those activities requires me to be active. Paper books, I'm merely flipping pages, eBooks I'm just scrolling with a thumb, same with my phone. And I can do all of the above while laying down or reclining.
He's not bad, he's just frustrated and doesn't understand. He helps with just about everything. I honestly don't know what I'd do without him. I feel bad, like I'm dragging him through the mud but I'm not trying to. He does SO much for me. He cleans (like actual cleaning) since I can only straighten up, he cooks for me and brings it to me, he helps out tremendously with the kids, especially the older two since they're more rambunctious. Plus he works a hot, hard, long job. He has no normal set hours since he's a laborer, it's not uncommon for him to be gone from 6 AM to 10 PM one day then 8A-3P the next. And he works with asphalt. He does a lot more than I have any right to expect, and I love him for it. I just wish he'd understand that I'm not like this because I WANT to be. I don't want to be bedridden or couch-ridden or to have migraines and weakness, dizziness and fainting. I don't want to be so weak I can't chase my kids around outside and tumble and play with them with gusto. I don't LIKE having to rely on other people.
I just wish I could show people. Be disappointed in my actions or lack thereof (as other people have said), judge me for what you think you know. But you're wrong. Getting out and being active might help a tiny bit, but it won't help enough to satisfy you (general you). I want to weep when I think about it. I've dealt with this for over 13 years. I was around 9 when I remember the first incident, possibly 10, but who knows how early it really started. I've been punished as a kid for laziness, I've been ridiculed as a teen, teased and sneered at as an adult. And by reading the info, it makes sense. I don't know what normal is. Not in any mature fashion of the word. I've never been normal. I've been passing out since I was 10. Who knows how I'd feel if I were normal. So I can't tell you what I'd be capable of. But I assure you, if I had the energy to be Super Woman, I would be. Any bursts of energy you see, are miraculous, and pitifully short lived.
And Dr. M already said, even if I was taking medication, it won't cure it. It won't fix me. It's just there to help. I don't know how much it'd help. I want to try it but I'm already depressed and anxious enough without adding nursing guilt on top of it. I just feel so alone sometimes. I have no one who really gets it. I can't even find much online. I only have one diagnosis that explains things so far and that's NCS, and I can find next to nothing online. Sure I've found several Dysautonomia blogs and sites but most are predominantly about POTS, which I have not been diagnosed with. I don't know what else IS wrong with me so I'm stuck just trying to find as much on NCS and then just following the POTS train. Which is very informative (even if not widely known). I've found a bunch of sites and blogs with very helpful information about Dysautonomia in general but I feel like a fraud when most everything is geared towards POTS. I feel like I have a sign taped to my virtual back in big bold neon letters screaming "I DON'T BELONG." I don't want to feel alone.