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asleep at mal 9/09
alumiere
yeah - so this is a great article about "invisible" illness 
5/31/09 0:58
asleep at mal 9/09
the author talks about MS, but it applies equally well to many other illnesses, including my struggles with arthritis, adrenal system failure and fibromyalgia

http://news.bbc.co.uk/1/hi/health/8064192.stm



the thing that really hit me the most was her frank discussion of "mind blanks" - it pretty well describes a newish (and terrifying) part of my condition... and so far, nothing is making them any less frequent or severe

It's difficult to communicate how the mind of a highly intelligent person can completely stop functioning and pretty much become a vacant space.

....

It is like looking at a vacant lot where there used to be houses, or not being able to retrieve files from a computer though you know they are there.


i hate this, i'm tired of being this broken, i want someone to find a way to rebuild my adrenal system so this stops now

and in other health related news, it's been miserably damp and chilly here all week, my arthritis has been flaring so badly i've been shaking (as in i can't hold a glass more than 3/4 full without spilling it everywhere - and that's when i'm paying attention) when the pain meds wear off, and my lack of a properly functioning immune system means that a few hours out friday (dressed warmly too) has tipped me over from "pain, but i can cope" to "i have another fucking cold too" (which is really tough - i can't take cold meds such as nyquil, robutussin, etc because of allergies and/or reactions with the heparin)

yeah - and i still feel flat emotionally, which is so alien - intellectually i'm fighting this & trying to keep things going normally (and not really succeeding)

but emotionally - it's like that part of my brain has been wrapped in cotton batting then shrink wrapped and shipped to antarctica where i get to talk to it once a week on aim for 15 minutes (and it's typing through the wrappings so there are a lot of typos and very slow responses) - i'd rather be the overly emotional mess i was a few years ago than feel like this all the time

ok - enough complaining; i'm lucky to have a great group of friends both locally and back east who help keep me sane and i can't thank you enough for being here to do that - and i can hope that tomorrow's a better day
Comments 
5/31/09 17:53 (UTC)
Thank you for that article! People always seem to forget that I have arthritis & fibromyalgia too. They find it a big surprise when I can't hold something or when I can't do the things that require fine motor skills of the hands. It sucks and believe me I wish it would go away. I wish it would go away too...I would love to be fixed and not be reliant on drugs...I know that it is an impossibility but hey we can always dream...also getting the meds I need not lets jeep you on this though it isn't doing anything for your condition....

GL and tender hugs!
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6/1/09 1:50 (UTC)
i know hollywood gets that wrong all too often

and i would bet my lj is hard to read; try setting your friends list to view in your chosen style (i view all my fl like this; too much white on the screen gives me bad headaches and eyestrain as i'm very sensitive to bright - hence the dark background/text - now if only i could figure out how to reset the background on the reply/post windows to at least a light grey...)
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6/1/09 2:19 (UTC)
I'm sorry, it all sounds like hell, I hope it gets better. I can hardly imagine it, I have a few things that flare up when I'm stressed, but all my issues are pretty mild compared to other chronic pain conditions. I hope at least the weather improves for you :(
6/1/09 15:18 (UTC) - love
That's the key, isn't it? tomorrow is a better day, you have to hold out hope.

Thanks for the article. It really helped clarify things. I Googled the phrase mind blanks (or however you put it last time) & the information that was online was vague & unspecific, disorganized..which is appropriate now that I have a better idea of what this feels like.

I know this is a cold comfort, but I'm glad you're writing about this. When things do get better for you - and they will - you'll be glad you kept a clear as possible log.

I hope you are slathering yourself with heat. Hot tub, hot showers, do you have an electric blanket? Those things have proved godly to me when I'm cold & achy. Are there affordable MT's out by you, or do you know someone who does it?

I can't imagine how scary the brain blips must be. I was watching a DVD last night, gay 90's era flick called Get Real, not bad..in a couple of the scenes, one of the actor's faces had some weird digitization issue, & the line of his jaw would go weirdly n & out of focus. both Jason & I commented on it, & weirdly, it occurred to me that how that *looked* must be how what you were trying to describe *felt*: kind of an emotional flatline, with weird flashes that might be emotions, but dim. Cotton batting says it all.

I feel for you. That must be freaky shit. I'm glad you have friends, family & love in your life to help see things through. Even if you think it's "just" whining, please keep sharing with folks who care about ya.

Edited at 2009-06-01 03:19 pm (UTC)
6/1/09 17:49 (UTC)
as someone with CFS, who knows many vibrant women facing MS, arthritis, and other chronics, I found this article to be really right on. Sadly.

the hardest thing is rebuilding yourself to go on with things every time--I wish you luck--
6/2/09 13:50 (UTC)
Thank you for continuing to give me brilliant links to explain me to other people. Even just this weekend, I said something about my arthritis to someone, got a funny look. For some reason they always follow with "how long have you had that?" and when I tell them since I was five they look at me like I've told them I'm actually a purple elephant. People just don't get it, don't understand that just because I look fine doesn't mean I'm not in agony, or using every last bit of my concentration to hold this thing or do that thing.

Hope the cold clears up soon, sweetie. I know what a bitch it is being sick in the summer, and I wish you well.
6/8/09 12:23 (UTC)
Yeah, from what people tell me, the fibro fog is very similar to the MS mind blanks. Don't you just hate all of these autoimmune disorders? *hugs*