Family

[Chrissy]

My brother has come to the conclusion that I need to grow up and learn to rely on myself. I need to pursue my drivers' license, take courses, get friends to do stuff with, and who knows what else. In his opinion I'm not retarded I should be able to take care of myself. He says my parents won't live forever and that he is not gonna be my "guardian". No one asked him too, anyways. What he doesn't understand is I'm not safe behind the wheel, I absolutely can't handle florescents and they are everywhere, I didn't drop out of school because I wanted to, and I tried doing the party all night thing. I'm not normal, I know that and my parents know that, that doesn't mean I expect him to take care of me. He acts like I don't want to grow up or that I still depend on my parents to take care of me. I don't. We are like 3 adults living in one house. I keep my mom company when my dad's offshore. I do stuff with my dad that my mom doesn't like doing, we're friends. Yeah they've paid all my expenses until now (hopefully disability goes through), and drive me around town, and let me live at home. But I pull my weight as much as I can and if I had to I could live on my own.

Besides it take a lot of maturity to deal with a condition like this. Anyone can drive a car, work a job, rent an apartment, have a family, and live free and easy. It takes alot of maturity to accept life relying on someone else to drive you around and pay your bills, be limited to what you can do and when, deal with the debilitating symptoms, and still not be a complaining thorn in everyone's side. But people don't see that part of your situation. All they care about is how you affect their lives.

Sorry to unload this, I just never thought my brother would disown me when my parents pass, which should be a good 50 years away.

[MightyMouse]

Chrissy,

I think that there is hope that you may be able to do some of what your brother suggests, but not necessarily do it exactly the way he might envision.

Having been ill all my life, I have to say that time DOES change one's view of what's important. I know you talked about maturity in your other thread--that's part of, I think, living a life reliant on others. I don't know if maturity is exactly the right word to describe what's going on for you or not...for me, when I've been homebound, I know I ended up growing a bit fearful of doing things alone, and I felt very dependent on others--and reality was, I WAS reliant on others.

For me, it took time for me to build back confidence about doing things independently, including driving (although driving isn't safe for folks with uncontrolled syncopal issues). Some of the things I did was to go on errands with Teri, but we'd part ways in the store, and I had my "to do" list to tackle then. Flourescent lights mess with me too, but I still plugged along anyway, b/c I knew that if I got into trouble, Teri was right there in the store. Then, if I was up to it, I drove us home--we only live about 2 miles from the store, and there's only a stretch of about 500 yards of busy road--everything else is more residential and quiet.\

As for schooling, there are options with regard to distance learning. Some distance programs are probably too hard for someone with a chronic illness b/c the coursework is fast paced and students are expected to participate nearly every day i.e. at university of Phoenix, they require substantial participation 5 of 7 days, and the undergrad courses are 5 or 6 weeks long. Regular univ courses are usually 10 to 13 weeks. Many colleges have disability support services and can assist you in setting up a program tailored to you.

As for friends--that's a tough one, but there are a few really good friends I've had for nearly all my life. They know I can't always go "out and play", but that we can catch up via phone or email often. Sometimes, all we do is a short dinner out at a local place and they drive. Granted, I'm working f/t now, but the issue then is, i've used up everything i have during the work week--and evenings and weekends I completely CRASH. By Sunday night I'm almost okay... Mondays are always tough--we'll honestly, every morning is incredibly hard. I do get lots of emotional happiness out of my job though, so it really, really helps me to drag myself up and out of the house (after the coffee, meds, and days like today, my support hose).

There's no easy answer here Chrissy. All I can say is that you have to do what you're body will allow with regard to independence with your life activities, and set achievable goals for yourself, one at a time. There is a bit of truth to the saying with regard to the brain that one must "use it or lose it". Even doing things like sudoku or crossword puzzles can help your brain.

Nina

[Chrissy]

I use my brain, just not as often as I should. I right screenplays, build puzzles, word search, and assist in running a home based business. I'm just limited to how often I do it or how much I'm able to accomplish before I get frustrated to physically unable to do it.

[Kitsakatsa]

It sounds like the conversations that I have with my brother when he tells me to just go off all medication. Brothers are like that. They want to fix you, and they feel bad when they can't.

Living on one's own and relatively independently takes time, but should be a series of small and meaningful goals. I know how frustrating it can be, and at times how scary it is. The way I see it though, I have to take baby steps each day or I will end up in the same place for way too long. My full time + schoolwork and my own house life has only been possible through a series of very, very small steps.

Everyone is different, but for me- I do two deliberate things:

1. I go to my limit each day and then go 10 minutes more. This can be laundry, running up and down the stairs for no reason, or going into a new store for no other reason than to keep yourself moving. Go to Home Depot and pick out your favorite paint chips. It doesn't matter, because the point is to keep your limitation level moving.

2. I tell myself that I'm not going to be young forever and as long as I'm sick anyway, I might as well go have fun with my friends and pretend that there's nothing wrong me and pay the price the next day. I call it my hangover saturday or sunday even though I don't drink. I plan for it. No-one would have ever guessed that the girl with the fishnet tights and the metallic outfit New Year's Eve at the Voodoo Lounge in Las Vegas ever had POTS!!!!

You must plan your success and roll with the punches. Only you can determine the next crazy step that you will take to get your life back. The most important thing is to make sure they are moving you in a good direction. I'm sorry to say, but writing and puzzles are good for the mind and not so good for the calf muscles.

Best of luck in your planning!

[pat57]

I feel your pain. And I don't have an answer for you!

people refuse to understand I think. Could he be setting the distance now because he is afraid that you may need him in the future? Rather then look his own selfish considerations in the face he is setting the blame ON YOU. This is a way out for him. Convoluted yes. In other words, he cannot face the truth.

Anyway, the future is not here and I hope you become well and make millions !!!!!!!

[Guest tearose]

What already has been said really is what I am also thinking.

I think those we love and who love us get scared for what our life may be like...and they worry about how we will manage.

Also, they want to be "free" of responsibility of taking care of us, this is natural.

If you can see how you will manage yourself in the future than share that path with others.

If you see yourself finding a way to move forward, then others will be at peace.

take care,

tearose

[MightyMouse]

Chrissy, I think that the "not using" the brain thing happens for us ALL. Thinking, at least for me, takes energy. When I've been persistently ill, I notice that my common sense disappears, and thinking through simple problems is out of my reach. For example, I had noticed that my closet light was just too dim and for months I put up with it--then one day this Summer, while i was recovering from surgery and my energy (and brain) were in the dump, Teri and I were walking through Home Depot. I told her that I needed to get a new fixture for my closet and she asked me why...and I explained I couldn't see well enough b/c the light was too dim. She looked at me like I had a few extra heads--and said, "why didn't you just put in a brighter bulb?" DUH!!!

Like I said, just take one step at a time.

Nina

[flop]

LOL Nina, I think most of us have had those sort of moments! Perhaps a "reverse lightbulb moment" when someone has to point out the obvious, rather than having a brainwave?

Flop

[roxie]

HI Chrissy! I read your post the other day, but have been trying to recover from an outing, but feel like I need to post, so I will try to make sense of this. I FEEL YOUR PAIN!!

I am 22 years old and have been sick since I was 12, I know exactly what you are going through. It's like your brain wants to be an adult, but your body can't keep up and you get treated like you are a child b/c you can't do everything people our age can do!

The thought of not being able to be on my own and living with my parents for ever is one of my biggest fears and makes me feel like my blood is running cold. Actually, it's even harder for me today b.c last night at dinner we were talking about my brother and his girlfriend's controlling mother, my dad says that if they get married the best thing they can do is move so she won't be around 24/7. I said something to the effect that if my parents still live here they would never be able to stay at my parents house bc they will always have to be at her house.

and my dad was all shocked and said "Where are you going to be?" It completely surprised him and blew him over that I want to move out. It's like it doesn't even occur to my parents that I think about daily how I am ever going to live b./c I want to be a woman but I have absolutely no idea how to achieve this

Idk if I am making any sense, but it just hurts my soul. If anybody has anytips on how to create independance or hope I'd be happy to hear them?

As you said in your other thread sometimes I feel less mature than others my age, but I don't think its that I am immature it's more that I haven't had the same oppurtunities that everyone else has had. I finally did complete my GED last year and started taking on online writing class, but that is all I can manage to do right now, I am stuck in a loop that I can't get out of things going wrong with my body, I keep reactin to my medications and it is torture it makes me fear of never being independant even deeper.

It's crazy to think that one of my best friends since first grade is getting married next May and I have never ever had a boyfriend(thats something that makes me feel immature and embaressed Chrissy!)

Am I crazy? I mean is there really hope for us POTSIES?

Madeline