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asleep at mal 9/09
alumiere
It's been quite some time since I've posted here, mostly because I… 
8/13/11 13:52
asleep at mal 9/09
It's been quite some time since I've posted here, mostly because I haven't wanted to spew my anger and despair all over the place. The world is going to hell, our governments are failing us in tons of ways, and a lot of people can't seem to understand their own privilege. But rather than rail about politics or equality or how crappy I feel at the moment, I have a specific thing to discuss.

I keep calling people out on this in person, and it is not getting through, so perhaps writing it down will give everyone time to process what I'm saying. I have had enough of being asked when I'll get better, when I'll be back to normal, of being told to get well. It's really simple - I have multiple chronic illness, none of which have cures, and several of which don't have effective treatments; there is no fucking better, and this is the new normal as much as I hate it.

I have good days and bad days (more bad than good the last few weeks), but the problems never go away. The pain drops from a 10 (nauseous) or 11 (really nauseous, can't think about food, but not throwing up yet) or an 12 (throwing up because I hurt so bad) to at best a 5. At 5 I still hurt, but I can take less pain medication and do more than 1 thing today - ie: go to the store OR shower and shave, then later on go out with friends OR dance for a little bit. I should note that all these levels are with medications that help without dulling my brain more or making me sleep. The numbness is covering more area now, but staying in the 5-10 range, and I've gotten better at coping with it so I hurt myself less often.

The thyroid disease and associated immune failures are never going away, but the doctor and I have found the right medication to keep my metabolism functional, I get boosters and immunizations regularly to help minimize my risks, and I keep my distance when people are sick. The memory loss continues, and I still don't drive. And the side effects from 'lyrica fail' are ongoing over a year and a half later - hyper- and para-osmia and constant ringing in the ears don't stop, I just have days when they're not as bad/obvious.

I love all my friends and family, and the support and love you give me is invaluable. But please stop with these questions, don't ask me why I've got my cane today (hint - my pain is bad or we're doing more walking than I can handle without it), and allow me to enjoy your company in whatever way I can.

The two pieces below are great things for you to check out as well - they're written by people with chronic illness and cover some of the realities I deal with daily.

http://www.butyoudontlooksick.com/xmedia-press/new-video-christine-miserandino-reads-the-spoon-theory/

http://hoydenabouttown.com/20110813.10393/border-gimps-living-on-the-border/
Comments 
8/13/11 23:24 (UTC)
Ah, me. My thoughts are with you, as loving and useless as we both know that sentiment to be.
8/14/11 0:05 (UTC)
I like the Spoon Theory, definitely a good way to explain all the extra effort that goes into routine stuff. Sometimes I wonder how helpful it really is for our species that our brains are wired to forget pain the way they do when it goes away. We'd be a lot more sympathetic and understanding toward each other if we could remember it better.

The internet is so full of awfulness. Lately I've found myself avoiding blogs that I used to read regularly just because I see so many articles about horrible things people have done, and then comments that are even worse.
8/14/11 11:43 (UTC)
Life's just not fair sometimes. Sorry you have to deal with this. Love to you. xx
8/15/11 7:17 (UTC)
I *love* the second link.
8/16/11 22:22 (UTC)
I'm glad you know people MEAN well, when they ask when things will get better, but a better question would be: how are you? how are you feeling? If you feel like talking about your health that day, you will. Otherwise yeah. People need to accept things are as they are.

I'm grateful you are getting quality care & attention & that you have Ty & Bellz-n-Jody nearby. I happy you still reach out through the 'net to let us know you're still chugging. I'm glad life has some kind of pattern for you, even if it's a new normal to adjust to. I'm glad that although you hate the new reality, that you still DO stuff, you still go & try & do.

I'm happy you are in the world, as your support & warm friendship have improved the lives of many.
8/21/11 2:48 (UTC)
*hugs*

Hear hear!

*sends spoons*

I am glad you are getting somewhere with diagnoses and medications. Would it be okay to hope that you have a better-than-usual day today (rather than wishing that you get well soon)?

P.S. I have a number/couple/few/some of "spoons" icons in my icon stable and you are welcome to them if you credit them as I have, if I have. ;-p

Edited at 2011-08-21 02:53 am (UTC)
11/5/11 21:22 (UTC)
Wow...I had a feeling about all this but I only knew you a bit from the clubs so didn't want to pry too much in depth. It's admirable that you have the courage to talk about your health and all the adjustments needed. I gleaned as much from your tweets but didn't want to ask about it too much.

Be well.
-Irene
11/6/11 19:11 (UTC)
Thanks. The way I look at it is that this is in part a record for me, and in part so people who want to understand have a better chance. Life is; I fail at coping a lot but to quote Jean 'every day above ground isn't all bad.