So the crappy thing is, I deal with it by myself.
I wish there was one person who would just understand every-which way I felt. There isnt, really though. Not unless you could fine someone with the exact same similar diseases, or similar symptoms with their disease, and my combination is pretty "special". I feel like I whine when I talk about it all to "normal" people, and by doing so alienate them from me. I push people away my father says.
My aunt tells me when I speak to her to only speak about the happy things in life. To perhaps water-down what I tell people about my life because it truth be told isnt so pleasant. I wonder why she honestly asks if she critcises me every time for telling her what goes on. It doesnt make me feel very nice. I've gotten to where I dont enjoy speaking to her at all, though I know she probably says it with decent intentions in her heart.
Boyfriends- they seem to never believe me at first when I claim to be as sick as I am. Like its impossible. And of course I'm always trying to be my best around them, so they often do not see me at my worst until the relationship has gone on a bit and Ive felt more at ease, more trusting, more...safe being my sick self. So when I allow myself to fall back a bit and take it easy (so I'm not always collapsing after they leave) they usually just go "ohmyGod, thiss is what she meant when she said she was ill? eww i cant handle thiss." then they poof. Friends are a bit better, but when I cant go outside always or go places they kind of get fed up with always doing the same old things with me at my house. I cant help being boring. I sort of like it. I never was a party-person. I actually dont think Im very boring, but some people think if theres no loud music or alcohol it automatically is.
Back when I was healthy, we would run around outside, me and my friends, all over my backyard and the playground at the school nearby. Manhunt, and roasting various edible things (and non edible, we were pyros hahaha) over my dad's fire pit in the backyard.. laying in the hammock.. We got a hottub out there recently though I havent the strenght to go in it much. Its huge, fits 7 people at least, and has one reclining part. Its made so big so I could do physical therapy in it, though I havent the chance. We're considering encasing the entire back deck and hottub in glass coated in that special material that would filter out the rays from the sun that harm me so I could even go out in the day... though night is a lot more fun cos I can go bathsuit-less and not be afraid of the neighbors seeing me hahaha. Also now in the winter, when one gets out the suit especially tends to immediately catch the cold air and cling to the body, where as nude one can merely throw on a thick robe and run for the cover of the kitchen. Moms always good to leave towels on the kitchen floor so I dont slip and fall on that tile. Then I either hop into bed or a hot bath. I cant wait til Im stronger and can use it more..
I will admit, I'm not having the best day. I got slightly burned last night by a light on dim (that was still white) so it just took longer for me to feel the effects of the burn and now I hurt all over. I preffer the brighter lights so I can recoil quickly. Mom thinks cloudy days are better for me, but theyre more dangerous because of the same thing. I dont feel the burn so I stay out longer and get burnt. But she said before "yeah but you can stay out longer though".... She just doesnt get it. Oh well. She at least admitted it was snowy out today and the reflection of that was very dangerous, I'm glad she conceded to that.
take care loves!