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question about disabilities


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#11
ashleigh

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on the humorous almost self depricating side, i do have the psycho lesbian with cat bit covered. but seriously, being as self conscious as i am most of the time or maybe it is just paranoia, not quite sure yet, i keep feeling that once the in depth conversations begin, i grow three heads, snarling with fangs whilst dripping acid, therefore causing the person to run away for dear life in fear of being devoured. our armor that we put on to protect us from the daily barbs and thorns soon becomes an almost permanent part of ourselves because we wear it so often and for so long. holly hobby crossed with a rotweiler might sound cute, but living such a life can take quite a toll on one's self. relaxation used to be a very rare thing for me. it had to be in a certain place in the presence of certain people, otherwise it would never happen. that is not a healthy state of mind to be in for extended periods of time. one thing that i have noticed, is that once a person has reached crisis point requiring intervention, self confidence seems to fly right out the window, no matter how strong and/or capable they are. and it is quite the bitch regaining it.

#12
ashleigh

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someone explained it to me in terms of having spoons. each day you start with a certain number of spoons, not always the same number, too. each activity you undertake requires a spoon. this would include getting out of bed, taking a shower, fixing a meal, etc. so each day requires seeing how many spoons you start with and then plan your day accordingly. the other tidbit was to always keep at least one or two spoons in reserve for emergencies. there are times that even dealing with people takes away a spoon or three. at some point on this forum, i believe i have mentioned having duck tape days. going to wallyworld when there is a large crowd takes away several spoons all at once and the duck tape is so that if i start to seriously wig out before exiting, my companion can restrain me before something bad happens. the main problem with crowds i have is that they make my internal radar ping off the wall like no tomorrow. it is worse than having flashbacks, because at least the flashbacks normally happen when i am alone. this way at least limits the potential trouble that can happen. i hope this makes some kind of sense.

#13
ashleigh

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trying to begin a relationship absolutely scares the piss out of me. if everything was able to be conducted during daylight hours, no prob, but the prospect of anything going on into the evening or even the morning bothers me. during those times, i feel like i am carrying around a portable pharmacy and i really don't relish the idea of trying to explain the meds, much less the conditions. sometimes i think it is easier to stay within the walls than being out in the world. very limited freedom, but acceptance is damn near guaranteed versus freedom and complete uncertainty, misconceptions and just plain ignorance.

#14
AmiDenise

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i, myself, have a veritable pharmacy in my bathroom, with meds that i take in the morning and at night.

here's what i've learned:

when you find the one that is really relationship material, she won't give a rat's a** how many med's you're on or what they're for. she'll just know that they're part of what's helping you to be the best you that you can be, and that will be all that matters.
One should no more deplore homosexuality than left-handedness. ~Towards a Quaker View of Sex, 1964

(As a left-handed lesbian, I'm particularly fond of this quote.)

#15
ashleigh

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someone once told me that add folk always tend to gather around/with other add folk, and from personal experience, i have found this to be very often true. i wonder if the same socializing patterns exist with other diagnoses?

#16
ashleigh

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Since my last comment on this, I have noticed that those of us that are touched with the divine madness do tend to gravitate towards each other regardless of diagnosis. The common bond is that we DO have a diagnosis and at some point in our illness, we gave recovery a chance. Recovery begins when we start to see and have hope. The reasons we seek each other out is are because we all have been through the hell of the onset of the illness and the crawl towards something of having a meaningful life. We listen, we share, we support one another and give encouragement and most important of all, we are living, breathing examples that recovery is possible. Does recovery mean that we go back to the way life was before the onset of illness? Nope. It does mean, however, that there is more to life than just waking up, taking meds and just trying to make it to the end of the day. It means that we can begin to live fulfilling lives and be a whole person who happens to have an illness instead of being seen as just our illness itself.

#17
LivvyB

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Quote

someone explained it to me in terms of having spoons. each day you start with a certain number of spoons, not always the same number, too. each activity you undertake requires a spoon. this would include getting out of bed, taking a shower, fixing a meal, etc. so each day requires seeing how many spoons you start with and then plan your day accordingly. the other tidbit was to always keep at least one or two spoons in reserve for emergencies. there are times that even dealing with people takes away a spoon or three.

Ah, I know that website... www.butyoudontlooksick.com. It corrolates better with some invisible ailments than others, though.

#18
velvetspoken

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"Ah, I know that website... www.butyoudontlooksick.com.
It corrolates better with some invisible ailments than others, though."

I noticed, I think, that this topic hasn't been posted on in a while,
but I'd like to add some comments. That website www.butyoudontlooksick.com
has some really funny stuff on it. On some of my most difficult days,
reading the jokes and wise crack answers to dumb and insensitive questions,
turned my mood if not my pain around. I've used the spoons theory page to try
to explain why I can do some things some days, but not others.
Not always successfully, but hey at least I tried. I've been sick for almost
10 years now and still adjusting. It took me 5 years just to get a diagnosis.
There is no cure for what I have only pain meds and so far ineffective treatments.
I have tried them all, but have not given up yet.
I have Complex Regional Pain Syndrome also known as Reflex Sympathetic Dystrophy.
Also Fibromyalgia and some stuff that's come up due to side effects of the meds I take.
It's mostly all invisible, unless you notice the subtle signs, after years of
learning to hide how bad I might be feeling. I still get from close family members
"just take some tylenol and get over it". Yes, thanks, I hadn't thought of that.
For the first 6 months of being in pain I did the (silent) crying, screaming,
begging to die thing, but the only answer I got was get up,
you aren't dying, so learn to deal. And it wasn't just the pain, it was the
loss of life as I knew it. The inability to live as I had been, do for myself,
the humiliation of having to ask for help from people who didn't even believe
I was sick. The loss and regain of self esteem. I've had good luck in love
and bad luck. Right now I find myself looking again, but I know there is
a woman out there who will see me for me and not for an illness that I happen to have.
We all deserve love. It's been hard, but I have survived and so have you women.
To AmiDenise and Ashleigh and the rest of us "Wow, you are one incredible woman
and a survivor." Ashleigh, thank you so much for serving your country so proudly
and bravely. The experience left you with emotional scars that run deep, but also
as a woman of great honor, substance and respect. If you'll accept a salute from a
girly civilian you've got one.
Lisa

#19
sarah plain and? average

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wow...you all are so strong and optimistic.
I am "only" 27...i say only because in chronological years that seems very small and insignificant. But i think, through experience and dealing with stigma, i am much older than my 27 years.
i have had a diagnosis of multiple personality disorder (now they call it dissociative identity disorder) for the past 5 years. I have been in treatment (called every diagnosis in the whole piece of crap DSM---psychiatrists bible) for the past 16. More than half of my life.
And i missed (if indeed missed is the correct word) junior high and high school.
i want to be in a relationship, and yes i realize that it will be work and i will have to adapt and i may have to go through some serious pain, but i want to be loved and to love. The problem is i freak out about little things. characters in movies kissing. sitting next to someone on the same couch. a stranger looking at me for too long. let alone holding hands with a potential lover.
Slowly things are getting better. but i have so many questions...
and i cant ask my therapist. she is straight and seems to shy from any broaching of the topic of same sex love.
and i am too afraid to read books or watch movies or other media.
and the last two women who said they loved me couldnt believe i was so stupid and ignorant. They had no patience and grew bored, impatient, angry, restless and petulant.
anybody who can field some questions?
"...tell me what is it you plan to do with your one most wild and precious life?" ---Mary Oliver





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