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asleep at mal 9/09
alumiere
chronic illness 
6/29/09 18:07
asleep at mal 9/09
i just took a survey on dealing with chronic illness - i hadn't really thought about some of the questions they asked so this took a lot longer than the 50-60 minutes they suggested, but i think it was definitely worth my time

first - for those of you on my f-list also suffering from chronic illness if you have time please take the survey at http://chronicdisease.survey.sgizmo.com

as for me, i know how frustrated i am with dealing with all of this, and how often i'm sick, feel down, etc. but i hadn't realized how much time every day i spend just on "managing my illness" as recommended by my doctors - somewhere around 16% of my waking day, every day, is spent making sure i take my meds, exercise, and track those things that i'm supposed to track for my treatment

but wait - that doesn't include the diet (and all the cooking that entails); the time lost to "mind blanks" and being sick (since my immune system doesn't really work, that's way too often); the extra sleep i need; time for actual doctors visits, tests, etc

and then there are all the real life needs - work (or trying to find a job), housework, endless reams of paperwork for insurance and taxes, bills, etc

and i wonder why i'm stressed and exhausted so much of the time... i want my life back now
Comments 
6/30/09 10:50 (UTC) - .08 where only .02 is required, as usual..;)
Given how much management it takes to take care of yourself - & I am not saying this disparagingly, in any way - wouldn't it make more sense to go on disability, & supplement your income w/ work you actually like doing? Your body is giving you so much grief that taking the right care of it/you IS like a job. & it drains you. For you to prolong your life & quality of life, it would seem wisest to admit the seriousness of what you are facing & then get some clever, creative work under the table. This would also leave you more time for the things that now take longer = housework, paperwork, etc. I dunno. You pay into a system so it can take care of you when you need it. Sounds like you need it.

You're not the type to just sit around, so it's not like you'd be idle. I can think of three of four people off the top of my head who wold love to have things sewn for them.

Just thoughts. I haven't done the best job managing my own situation, so take whatever I say w/ a grain of salt or two.