The Dark Side
I know I'm all brave and inspirational and so well adjusted and all that rubbish. But there is a serious dark side and it's been coming out lately.
I am NOT coping with the heat. I am virtually comatose in the heat - it makes the pain worse, it makes me really stiff and achy and it makes me miserable. I get very sooky and teary. So I am not a happy camper lately. I spent most of this weekend either asleep or in a LOT of discomfort and pain. This morning I cried from the pain - something I very rarely do.
I also think I will stop playing as much chess. It is extremely depressing to have a measurable sign of how much my brain is deteriorating. I lost 150 rating points in the past couple of months. And I'm just missing things. Big things. Like rooks.
I am very much noticing the effects on my brain now. Mama has established a policy of telling me after I've repeated something three times. (I am turning into Nana.) I forget things, I repeat things. I don't remember words or names. I am completely all over the shop. And things are so foggy in there - a perpetual narcotic miasma that makes sharp clear thinking impossible. I almost don't remember what it was like. I used to be so intelligent.
But the Dark Side? I am becoming obsessive about the unimportant stuff. It is not unusual for me to have a freak out at midnight about the need to get the washing done. I'm obsessive about the cleanliness and tidiness of the kitchen. It's really quite stupid.
We think we have worked out what it is though. I am so freaking well-adjusted to the big bad scary stuff in my life (ie the dying bit) that I don't have anything left to cope with the basic kitchen cleanliness stuff. I'm just projecting all my anxiety and worries onto something I can actually change. It is the same thing as when I'm in hospital - my tray MUST be impeccably arranged. It's my way of controlling the things I can control when there is so much that i can't. And I'm not the only one doing it.
I have also started apologising manically for being such a burden. And that is just stupid. I think I feel like I should be the perfect housewife, perfect wife, when it's all I can do sometimes to get out of bed. (Sometimes I can't even do that.) I feel bad asking people to do things for me. (Like get me painkillers or make food.) And I feel bad letting people down if I can't go out. I'm caught in a stupid guilt cycle and need to bust out of it. People who apologise all the time are really irritating.
I love Jason so much - he can see all this stuff when I can't. It is so amazing to be with someone who loves me so much and is a wonderful carer, companion and partner. God blessed me so much when he sent me to that party instead of the movies.
Thanks for the vent - I'd apologise for being a burden but I'm trying to stop that *wry smile*.
With much love,
Jessie
PS I'm wearing short shorts again today which has cheered me up a little.
I am NOT coping with the heat. I am virtually comatose in the heat - it makes the pain worse, it makes me really stiff and achy and it makes me miserable. I get very sooky and teary. So I am not a happy camper lately. I spent most of this weekend either asleep or in a LOT of discomfort and pain. This morning I cried from the pain - something I very rarely do.
I also think I will stop playing as much chess. It is extremely depressing to have a measurable sign of how much my brain is deteriorating. I lost 150 rating points in the past couple of months. And I'm just missing things. Big things. Like rooks.
I am very much noticing the effects on my brain now. Mama has established a policy of telling me after I've repeated something three times. (I am turning into Nana.) I forget things, I repeat things. I don't remember words or names. I am completely all over the shop. And things are so foggy in there - a perpetual narcotic miasma that makes sharp clear thinking impossible. I almost don't remember what it was like. I used to be so intelligent.
But the Dark Side? I am becoming obsessive about the unimportant stuff. It is not unusual for me to have a freak out at midnight about the need to get the washing done. I'm obsessive about the cleanliness and tidiness of the kitchen. It's really quite stupid.
We think we have worked out what it is though. I am so freaking well-adjusted to the big bad scary stuff in my life (ie the dying bit) that I don't have anything left to cope with the basic kitchen cleanliness stuff. I'm just projecting all my anxiety and worries onto something I can actually change. It is the same thing as when I'm in hospital - my tray MUST be impeccably arranged. It's my way of controlling the things I can control when there is so much that i can't. And I'm not the only one doing it.
I have also started apologising manically for being such a burden. And that is just stupid. I think I feel like I should be the perfect housewife, perfect wife, when it's all I can do sometimes to get out of bed. (Sometimes I can't even do that.) I feel bad asking people to do things for me. (Like get me painkillers or make food.) And I feel bad letting people down if I can't go out. I'm caught in a stupid guilt cycle and need to bust out of it. People who apologise all the time are really irritating.
I love Jason so much - he can see all this stuff when I can't. It is so amazing to be with someone who loves me so much and is a wonderful carer, companion and partner. God blessed me so much when he sent me to that party instead of the movies.
Thanks for the vent - I'd apologise for being a burden but I'm trying to stop that *wry smile*.
With much love,
Jessie
PS I'm wearing short shorts again today which has cheered me up a little.
posted by Jessie at 4:24 pm
2 Comments:
Hey Jess,
I hope the rest of the evening cheered you up a little more. Also maybe next time we catch up you can challenge me to a game of chess. Even at my most competetive you would still kick my ass... as your performance last night clearly reminds me. Any way a good cry or even a good sook never goes astray - god knows I have a good ball sometimes for not much reason at all. It just makes it easier to let go of everything for a little while.
Love and hugs.
Chelle.
Hi Jess,
I just read your story in this week's That's Life. You are an amazing young woman. To create this website takes enormous courage and I hope it is also helping you. My beautiful son Brenton died three years ago aged 19, and like you, he got the most out of his life. He was the bravest and strongest young man and taught me much. I feel him with me still, all the time. I wish you well on your journey, and remember to be kind to yourself.
with much love, Jenni
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