Parents have basically given up on me; Not sure what to do

vivreestesperer · Posted: Sun Aug 03, 2008 5:19 am Post subject:

I am not sure what to do and feel like I have come to my wit's end. It is a really complicated and weird/difficult situation so I will try to explain it the best I can.

In addition to Asperger's I have something called chemical sensitivity, this means that all chemicals and smells from chemicals make me really sick, like perfumes/scented products/buildings/etc etc etc etc the list is endless. Because of this I can't go most places or just about anywhere, I get really sick in most buildings as I react to building materials, cleaning products, pesticides, air fresheners, so on and so forth, and it is BEYOND BELIEF frustrating. To say the least.

This has only been the case for the last year or so, so I'm still getting used to it. Because of this I can not work or volunteer or do anything. I get disability. I also cant find a place to live. Ive been switching back and forth between my mom's and dad's in different states and neither one of them wants me and it is like hell living with them. I can't drive so I am completely dependent on them and they resent the hell out of it. I can't find an apartment because I have bad reactions to them, I am not sure exactly why for all of them but often it will be something the floors were refinished with or carpet or pesticides inside the building.

Living with a roommate is impossible because of all the things they use mostly.

I dont have any kind of life and this has gotten more and more depressing as the months go by. I have lived in 10 or 12 different places in the last year trying to find a place to live, between roommates, family, and apartments that I have tried.

I have been at my mom's for four months in Montana and getting worse and worse. The worst part is my mom does not believe i have a disability at all, she thinks it is all in my head and I am making it up or it is all psychological and i could "snap out of it" if I really wanted. I've seen doctors and psychiatrists and they can't do anything. But there are naturopathic doctors who might be able to help and have helped other people with my condition but my parents dont believe in naturopaths so I cant see them or do anything that might help cus of money and they wont help.

My mom has been really nasty to me and made it much harder and that is hard to take. I mean she we stay out of each other's way most of the time but sometimes she gets at it and it just makes me feel like the world is about to fall apart.

The thing that bothers me the most is what she has said lately. She told me in these words exactly that I am a waste of space, I am useless, I dont do anything. That hurt me so deeply. People that are disabled have value too, they just do things differently, they can help people with their problems by listenign to them and still have value. She tells me she doesnt believe I have this problem and that is killing me because I work so hard every day not to give up as every day I feel so sick from normal everyday things like her scented lotion or cleaners or such, sometimes so sick I feel like I want to die, and I have to keep rallying myself to not give up and keep going, and she doesnt even believe I have the symptoms inthe first place, it's maddening, I can't stand it. She thinks I am lazy but I am trying so hard every day and it so much f***ing work! I hope we can swear here.

And for nothing. She says "she's never seen me sick" but if you're not falling over vomiting or something really obvious like that then how the hell would she be able to tell??? Especially because I've made it my primary goal never to "look" sick or complain or seem to be doing badly around her as she will eat me alive if I do, she gets REALLY MAD if I ever show any weakness or seem to be doing not well. She's been that way since childhood. She keeps telling me I am going to end up in an institution or in the streets and what will I do when she dies? That is such fatalistic thinking, it's freaking ridiculous. Concentrate on getting through the day, the week, the month, the year, not what will happen 30 years from now.

If I look sick or if I stop trying so hard and let myself get overwhelmed and upset and start acting out I'll end up on the streets or an institution. If I keep trying really hard to do the best I can then she thinks I dont have any problems!!!!! It's a Catch 22 what is there to do about it??

The part I am really struggling with is this. I just don't know how I can go on like this. It is bad enough to have those thoughts privately and think "God, this is hard, why bother" and entirely another to hear your own mother tell you the things that are your own private worst fear and tell you with apparent glee (glee masked as worry probably but still very unsympathetic glee)
that you are not worth anything and are going to end up on the streets.

I just don't know what to do. I mean, before when I thought about giving up I would tell myself, No, you have to keep going,
you have to survive, you should be proud of yourself, you're a survivor, you're doing a really good thing just by fighting to stay in the world, fighting to go out every day and do something with yourself. I would set little goals for myself and things to look forward to, make sure I had a routine so that the hours would pass more quickly and seem almost useful, make sure I had something to look forward to every day. I still do that but I feel myself slipping, because now when I start to think of giving up I hear my mom's voice in my head basically telling me that I should. And I cant help but think, if my own mother doesn't care if I live or die, if she thinks I'm not worth it, then why the Hell am *I* sticking around for???? Why experience so much pain and suffering every day for nothing? And shouldn't my own mother be understanding and rooting for me, supporting me, telling me it will get better and to hang in there?

I don't have much for the way of friends and most of my family has basically given up on me. They think if i can't accomplish life on my own then they won't help me, that basically I created my mess and i can live or die by it. But I didn't - I never even heard of anything called chemical sensitity a year ago - the last year has been such a nightmare - if they had lived it they would have understood how frightening and bewildering it was to suddenly get sick like this - ive been on MCS lists for a year reading everything I can about it and trying to figure out how to help myself - most of it I cant even try because they wont pay for medical treatment for it because they dont even think it exists. Social services can't really help as the only thing that would really help is finding a place to live I dont react to and on this budget I dont know how to do that, or on any budget really, waiting lists for any kind of financial assistance take at least a year and even then it's no guarantee I'll find a place that is safe for me.

I have a nurse practitioner and occupational therapist who havent been that helpful but havent been harmful either who say they will talk to my mom but i dont know if they will be sympathetic to me or just make things much worse, if my mom thinks someone else thinks im "not trying" then she'll become unbearable. I have all these sensory issues from AS but the OT can't do anything about it and the NP can't help either.

my therapist who ive seen for only 5 or 6 weeks probably understands my challenges better as ive talked to him a lot more than either of those two but i dont know if he would agree to talk to my mom or if he would be an effective communicator, i havent decided if i like him or not, he's again not that helpful but not harmful either, he wants to help but doesnt know how.
I can ask him but not until next week.

Oh and meanwhile my mom has gotten a new car which is about the most toxic thing you can get for someone with a chemical sensitivity because of all the new chemicals in it and I am scared to freaking death because I dont want to lose the little health I have left and I have had breathing problems in a new used car before which is not as as bad as a used car would be. I have no method of transportation other than this car and we live about 4 miles away up a busy highway from the nearest bus stop or town. I have avoided it so far as I was able to take taxis Thurs and Fri and stayed in this weekend which I hate doing but not nearly as much as getting sick, but I will have to go in it very soon, and I am so scared.

I was just thinking, maybe it wouldnt be so bad to bike FROM the Walmart and not to it as if it is mostly downhill than I imagine I could just coast, except I dont think there is a bike path on the highway, most people dont bike on highways, is it even legal?
I dont know. I just looked on Mapquest. 3.19 miles actually from nearest bus stop to my house. EXCEPT, DAMN IT! We live on the steepest hill I have ever seen in my life. I felt like I was practically going to die the one time I had to walk up it. Granted I was probably going too fast but still. There's no way I could bike up it, I'd have to walk , probably an 8-10 min windy steep hot mosquito ridden walk at the end of a long bike ride, not so good. Ehh maybe it wouldnt be as bad the second time? Always something. I dont know, I dont actually have a bike, my mom said she has one though. Bikes are really uncomfortable for me to use and actually can hurt due to a particular unmentionable problem,a nd i havent used one since I was like probably 18, in 6 years, but maybe I coudl try. I'd have to take the bike in the taxi to town and then park it somewhere and then take it onthe bus to Walmart so it would be a huge deal though. I wish we lived in town. I cant for the life of me remember how long it takes to bike 3 miles. I used to bike when I was a kid 2 miles to a local store but I cant remember how long it took. Sometimes when I was older I would bike approx 7 miles to a shopping center (but hardly ever it was exhausting) and that took half an hour I think. So cut that in half and 3 miles might not take more than 15 min. Which would be good. I never considered that it might be possible to do it going back rather than there. Well, I never had a need to before the new car. I think I might be scared I'd fall since I havent done it in so long, the road is supposed to be kind of potholey and not great and if the downhill is too steep then you'd get too much speed, hit a pothole and fly off the bike. That would be bad. I dont know. When you're riding in a car you dont pay too much attention so I'm not sure what the road is really like. So yea it would be a half an hour bus ride to Walmart and I have trouble on buses cus of smells a lot, and then the bike ride and walk up the hill. Hmmmmm. Maybe? Oh yeah and I forgot to mention it's like 90 degrees out most of the time so that would make it more difficult. I would go later in the day when it wasnt as hot but the bus only goes up to 6 or 7 and I dont think its that much cooler by then not until like 8.

Okay I know this probably the longest post that has been posted in eons but I had to talk to somebody.

I just dont know what to do.

Thanks.
Kate