Apparently it's Invisible Illness Week.
Sep. 8th, 2009 08:03 am![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
snugglekittyWhy? Go here if you don't know what that means.
1. The illness I live with is: PTSD and migraines - I have two! The PTSD is more limiting so I'll talk about that for the rest of these questions.
2. I was diagnosed with it in the year: 1998
3. But I had symptoms since: As far back as I can remember.
4. The biggest adjustment I’ve had to make is: Really changing the way I deal with my family.
5. Most people assume: I worry people think I'm being selfish or self-indulgent for not "taking a pill and getting over it."
6. The hardest part about mornings are: Seeing everyone around me go to their normal jobs and feeling like I'm not up to it.
7. My favorite medical TV show is: Ugh, I hate medical TV shows with a blinding passion.
8. A gadget I couldn’t live without is: My feeling scale, which I created myself based on ideas from the book Hello, Cruel World!
9. The hardest part about nights are: The nights when I'm too scared to go to bed are the worst.
10. Each day I take __ pills & vitamins. : I don't take any pills for my PTSD and I never have. I do take four a day for my migraines.
11. Regarding alternative treatments I: I've tried a lot of things in the past ten years. There's no magic bullet. Acupuncture helps a bit.
12. If I had to choose between an invisible illness or visible I would choose: Visible. I feel really alone in this sometimes.
13. Regarding working and career: I had to change my job to one that was mostly very flexible about hours. I still can't work anywhere near as much as I would like to.
14. People would be surprised to know: Recovering from trauma is not self-indulgent, it's fucking hard work you don't get paid for.
15. The hardest thing to accept about my new reality has been: People spend decades trying to heal from this sort of thing. There are no short fixes. I've spent ten years and I'm not even close to done.
16. Something I never thought I could do with my illness that I did was: I don't really think that way. If I've got to do something, then I find a way. But it did surprise me I was able to get my own business started and in the black.
17. The commercials about my illness: Mostly have to do with veterans. A lot of people, myself included, have trauma from other sources (especially in places like the US where war is not a daily reality for most people).
18. Something I really miss doing since I was diagnosed is: Uncomplicated sex with guys. Having intercourse without it having to be a big deal.
19. It was really hard to have to give up: My financial independence.
20. A new hobby I have taken up since my diagnosis is: Crochet. I started to get a little stir crazy, so I had![[livejournal.com profile]](https://www.dreamwidth.org/img/external/lj-userinfo.gif)
catskillz teach me.
21. If I could have one day of feeling normal again I would: Have a lot of sex, maybe go to an event that was really crowded like a concert.
22. My illness has taught me: You can't control your life. Actually it's an awesome lesson, one I really needed. It helped me to stop worrying about a lot of things.
23. Want to know a secret? One thing people say that gets under my skin is: "You're not leaving the party already?" Trust me, I already feel bad enough when I walk out early.
24. But I love it when people: Respect how much I want to say about things.
25. My favorite motto, scripture, quote that gets me through tough times is: "Perhaps all the dragons of our lives are princesses who are only waiting to see us once beautiful and brave." - Rainier Maria Rilke
26. When someone is diagnosed I’d like to tell them: This isn't the end. You're still you.
27. Something that has surprised me about living with an illness is: People really can't tell. They just assume you're fine.
28. The nicest thing someone did for me when I wasn’t feeling well was:trouble4hire rocked my world helping me come up with an action plan for times when I don't feel good.
29. I’m involved with Invisible Illness Week because: It's too invisible.
30. The fact that you read this list makes me feel: supported.
1. The illness I live with is: PTSD and migraines - I have two! The PTSD is more limiting so I'll talk about that for the rest of these questions.
2. I was diagnosed with it in the year: 1998
3. But I had symptoms since: As far back as I can remember.
4. The biggest adjustment I’ve had to make is: Really changing the way I deal with my family.
5. Most people assume: I worry people think I'm being selfish or self-indulgent for not "taking a pill and getting over it."
6. The hardest part about mornings are: Seeing everyone around me go to their normal jobs and feeling like I'm not up to it.
7. My favorite medical TV show is: Ugh, I hate medical TV shows with a blinding passion.
8. A gadget I couldn’t live without is: My feeling scale, which I created myself based on ideas from the book Hello, Cruel World!
9. The hardest part about nights are: The nights when I'm too scared to go to bed are the worst.
10. Each day I take __ pills & vitamins. : I don't take any pills for my PTSD and I never have. I do take four a day for my migraines.
11. Regarding alternative treatments I: I've tried a lot of things in the past ten years. There's no magic bullet. Acupuncture helps a bit.
12. If I had to choose between an invisible illness or visible I would choose: Visible. I feel really alone in this sometimes.
13. Regarding working and career: I had to change my job to one that was mostly very flexible about hours. I still can't work anywhere near as much as I would like to.
14. People would be surprised to know: Recovering from trauma is not self-indulgent, it's fucking hard work you don't get paid for.
15. The hardest thing to accept about my new reality has been: People spend decades trying to heal from this sort of thing. There are no short fixes. I've spent ten years and I'm not even close to done.
16. Something I never thought I could do with my illness that I did was: I don't really think that way. If I've got to do something, then I find a way. But it did surprise me I was able to get my own business started and in the black.
17. The commercials about my illness: Mostly have to do with veterans. A lot of people, myself included, have trauma from other sources (especially in places like the US where war is not a daily reality for most people).
18. Something I really miss doing since I was diagnosed is: Uncomplicated sex with guys. Having intercourse without it having to be a big deal.
19. It was really hard to have to give up: My financial independence.
20. A new hobby I have taken up since my diagnosis is: Crochet. I started to get a little stir crazy, so I had
catskillz teach me.21. If I could have one day of feeling normal again I would: Have a lot of sex, maybe go to an event that was really crowded like a concert.
22. My illness has taught me: You can't control your life. Actually it's an awesome lesson, one I really needed. It helped me to stop worrying about a lot of things.
23. Want to know a secret? One thing people say that gets under my skin is: "You're not leaving the party already?" Trust me, I already feel bad enough when I walk out early.
24. But I love it when people: Respect how much I want to say about things.
25. My favorite motto, scripture, quote that gets me through tough times is: "Perhaps all the dragons of our lives are princesses who are only waiting to see us once beautiful and brave." - Rainier Maria Rilke
26. When someone is diagnosed I’d like to tell them: This isn't the end. You're still you.
27. Something that has surprised me about living with an illness is: People really can't tell. They just assume you're fine.
28. The nicest thing someone did for me when I wasn’t feeling well was:
trouble4hire rocked my world helping me come up with an action plan for times when I don't feel good.29. I’m involved with Invisible Illness Week because: It's too invisible.
30. The fact that you read this list makes me feel: supported.
![[identity profile]](https://www.dreamwidth.org/img/silk/identity/openid.png){kind=small}
no subject
Date: 2009-09-08 05:43 pm (UTC)no subject
Date: 2009-09-08 06:12 pm (UTC)no subject
Date: 2009-09-08 05:44 pm (UTC)Amen, sister, AMEN.
no subject
Date: 2009-09-08 06:07 pm (UTC)no subject
Date: 2009-09-08 06:12 pm (UTC)no subject
Date: 2009-09-08 10:09 pm (UTC)One thing that I did learn from being on an impatient unit that was primarily PTSD and Bipolar folk is.. it takes strength. And god knows that that you've got it in spades. I always hope for the best for you, and that the PTSD becomes less of an issue as time marches on. :) You are kicing it's ass, and will continue to do so. :)
no subject
Date: 2009-09-11 07:23 pm (UTC)All you can do is keep going.
no subject
Date: 2009-09-08 11:46 pm (UTC)no subject
Date: 2009-09-09 01:31 am (UTC)no subject
Date: 2009-09-11 09:09 pm (UTC)no subject
Date: 2009-09-10 06:35 pm (UTC)no subject
Date: 2009-11-04 01:06 pm (UTC)no subject
FWIW, when we lived in the same city (I assume this is relevant because it was less than 10 years ago; please correct any nonsense), I was always impressed by your self-discipline in adhering to a schedule of activities even when they were solitary — writing, praying, painting, whatever. The idea that you might have trouble getting out of bed in the morning seemed ludicrous. Was I just being dense or are you really that powerful even when moving through a long healing process?
After I read this, I wished I knew how to shapeshift into a velvety wide-eyed raver chick, so that it couldn't be a problem to offer you a big hug.
no subject
Date: 2009-11-04 01:10 pm (UTC)In thinking about how things were in the past - this has been relevant to me for more than ten years, yes, but the peak of the challenges, when I had the most trouble with getting out of bed or doing anything that wasn't self-care, was after you had moved away.
I would gladly accept a hug from you even without the shapeshifting. Thank you.