maree

I just dont know what to do. I dont want to die. I just want the pain to go away. and the only way i see it going away is death but I dont want to kill myself. Sure I get sad sometimes, I get frustrated sometimes, but i also get extremely depressed sometimes and it always leads to suicidal thoughts. I took a nap. I read a "self help" book. I have tried to meditate. I tried to clear my mind. I tried to focus on my problems and figure out a solution for them but when you feel hopeless its hard to think positively about the future and when you cant stop crying and thinking of all the emotions its hard to clear your mind. Nobody understands. They say just watch tv just do something until the feeling goes away. but when the feeling is so strong that it consumes your emotions what are you supposed to do?

I get to feeling that way too. Especially when I think about how my dog suffered because of me, and how much life my partner does not have since he foolishly chose to be my carer.

I am not always alone in the house, if I was, I would not be able to survive, but I try to make a point of always having somewhere to go every day of the week, despite that I am so very tired. Even a trip to the doctor/dentist/ hairdresser/ supermarket is better than staying home alone. Even if we do not need any groceries, or maybe one item, if I feel really low, i will go to the supermarket - it gets me out of the house, and amongst people, doing something that normal able bodied people have to do. If there is absolutely no need to go to the shops, I will take the dog out for walk, or down to the park, just a short distance away, and take a book with me. Getting out of the house is the most important thing.

Before the stroke, I used to do those things too, except that back then, I always had a part time job that I could go to.

Maree: from a caregivers viewpoint. Family day today. Everyone is in the house discussing what the plans are. Bruce can't get into the house easily and since we are going right back out, I don't get him and the WC, and walker out; just to get him back in. When my sister and I discussed this tonight, I explained that this is the loneliness and isolation Bruce and I feel. Does anyone think to do this by the car and include us? Or come out and offer to help get Bruce inside. I said it is almost like we have become an afterthought. And this from family, can you imagine the rest of the world?

 

I just accept it now. If people ask, as my sister did, I explain it. If not, just go with whatever we are given and be thankful for it. Debbie

I know that people make plans...then, after they have done so, they say - what about Maree? Maree, of course, cannot do whatever it is, (or they do not want to interrupt their enjoyment by helping me) so they, then have to make plans for me, exclusively, which is annoying for them, and embarrassing for me. My partner solves the problem by leaving me in the car, or on a seat, whatever. Why do they not see, that I would just be glad to go along and watch them rock climbing, go-cart racing, whatever, rather than being left behind as an after thought

I believe the problem is that other people cannot even begin to comprehend what it is like to be a competent normal person, one day, then permanently disabled the next. They cannot identify with you what it is like to wake up in the morning and know that you will have to limp around the house doing the stuff you used to do easily and competently, but now doing poorly and slowly with difficulty. And they are embarrassed because they know that they cannot say anything that will make it better. No, "give it time" will improve the disability, no hard work makes it any better, it is permanent, which is the greatest fear of all humans.

Certainly both I, and they are happier when I have a "genuine" health concern, like a broken arm, a cold, whatever, they can then identify with me and offer sympathy, which makes them feel good, and makes me feel a little less of an outsider

And the worst thing is that they have no respect for a disabled (and therefore retarded) person, so they do not want to have anything to do with you, it is embarrassing to have to relate normally to a person who is retarded, since that then, could identify THEM as retarded also.

My feeling is that I no longer produce oxytocin (the trust hormone) and that is why people do not want to have anything to do with me. My partner is a very popular man, obviously producing a lot of oxytocin, and I have reached the stage wherein I do not wish to go out socially with him, because his presence overrides mine, people do not wish to converse with me, when he is around.

Unfortunately I NEED people interaction, because life is so empty and lonely, now, anyway, and that people do not want to have anything to do with me makes life that much more lonely because I no longer have the ability to get out there and join in.

I have strayed from what I was planning to say, I am afraid. To me, it is the lack of understanding (maybe they do not want to understand) which then leads to lack of respect, and my own lack of oxytocin which makes me socially repellant