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beltainelady1. The illness I live with is: Fibromyalgia, Narcolepsy, Depression and some strange tremor which isn't Parkinson's related, at least the doctors don't think it is. I seem to be developing arthritis or bursitis as well, need to see a doctor.
2. I was diagnosed with it in the year: Hmmm...Fibro in 2003, I think. The narcolepsy and tremors are new additions, as is the joint pain.
3. But I had symptoms since: I've had some sort of pain issue since at least 2001, if not earlier. I've had knee problems for a very long time.
4. The biggest adjustment I’ve had to make is: Planning my day around my energy levels. I have to be very careful if I want to go anywhere, because if I'm tired, I can fall asleep in an instant, including while I'm driving. I've become a homebody, and I used to be very social and active...now I'm a lump (at least that's how it feels).
5. Most people assume: Thankfully, I have many friends with invisible illnesses, so they don't assume anything. Strangers seem to think I'm pretending or lazy.
6. The hardest part about mornings are: Being in a fugue state. It takes a long time to wake up, and once I'm awake it takes a long time to actually be able to think or move.
7. My favorite medical TV show is: I don't watch medical shows anymore. ER is over.
8. A gadget I couldn’t live without is: My computer and internet. Often, it's my only way to communicate with the greater world and my friends.
9. The hardest part about nights are: Staying awake long enough to enjoy time with my family. I'm usually ready to drop right after dinner. I guess that's the one good thing about the narcolepsy: when I'm ready to sleep, I sleep. Tylenol PM is usually enough to manage my pain at night, so I've been able to sleep through. Apparently, I twitch and moan a lot in my sleep, though, so I honestly can't say whether my sleep is restorative.
10. Each day I take __ pills & vitamins. (No comments, please) Neurontin: 400 mg 3x a day; Effexor XR: 150 mg once a day; Ritalin: 15 mg 2x a day; Ibuprofen, Darvocet, Flexeril...all as needed to manage pain.
11. Regarding alternative treatments I: find massage helps my pain levels, but only temporarily and some therapists are better than others. Acupuncture made my pain worse.
12. If I had to choose between an invisible illness or visible I would choose: HAHAHA, Silly question. None.
13. Regarding working and career: I don't work anymore, being on Social Security Disability. I'd much rather work and feel like I'm contributing to society and my family.
14. People would be surprised to know: How much I still manage to accomplish through the pain.
15. The hardest thing to accept about my new reality has been: My loss of independence. It's been REALLY hard to allow myself to depend on others financially, emotionally, everything. I still struggle with accepting it, and am thankful that Will seems to understand that it's not him, it's me.
16. Something I never thought I could do with my illness that I did was: Modeling. Harder than it looks.
17. The commercials about my illness: all sell some miracle drug that has horrible side effects and doesn't work for everybody.
18. Something I really miss doing since I was diagnosed is: Dancing. I love to go out dancing but I can rarely stay awake to go out at night, much less dance.
19. It was really hard to have to give up: My independence.
20. A new hobby I have taken up since my diagnosis is: Knitting. At least I can do it lying down.
21. If I could have one day of feeling normal again I would: Normal?? What's that? For me, normal is probably other people's "horrible". But, if I could go without pain and fatigue for one day I think I'd go traipse around NYC. I miss home.
22. My illness has taught me: To be patient with myself. I can't do everything in one day and perfection is an illusion.
23. Want to know a secret? One thing people say that gets under my skin is: "If you just ____________, you'll be better." Thanks for the advice attempt, but I've tried it all and have learned to deal.
24. But I love it when people: Accept me as I am.
25. My favorite motto, scripture, quote that gets me through tough times is: This too shall pass.
26. When someone is diagnosed I’d like to tell them: Be gentle with yourself. You'll have to make adjustments, but you CAN still live life fully.
27. Something that has surprised me about living with an illness is: That I am tougher than I thought. My good days would probably bring others to their knees and I still manage to accomplish things and enjoy my life.
28. The nicest thing someone did for me when I wasn’t feeling well was: Let me cry and vent and they still loved me.
29. I’m involved with Invisible Illness Week because: There are so many of us in the "But you don't look sick" category, and people need to be aware of just how debilitating these illnesses can be.
30. The fact that you read this list makes me feel: Grateful, like you actually care.
2. I was diagnosed with it in the year: Hmmm...Fibro in 2003, I think. The narcolepsy and tremors are new additions, as is the joint pain.
3. But I had symptoms since: I've had some sort of pain issue since at least 2001, if not earlier. I've had knee problems for a very long time.
4. The biggest adjustment I’ve had to make is: Planning my day around my energy levels. I have to be very careful if I want to go anywhere, because if I'm tired, I can fall asleep in an instant, including while I'm driving. I've become a homebody, and I used to be very social and active...now I'm a lump (at least that's how it feels).
5. Most people assume: Thankfully, I have many friends with invisible illnesses, so they don't assume anything. Strangers seem to think I'm pretending or lazy.
6. The hardest part about mornings are: Being in a fugue state. It takes a long time to wake up, and once I'm awake it takes a long time to actually be able to think or move.
7. My favorite medical TV show is: I don't watch medical shows anymore. ER is over.
8. A gadget I couldn’t live without is: My computer and internet. Often, it's my only way to communicate with the greater world and my friends.
9. The hardest part about nights are: Staying awake long enough to enjoy time with my family. I'm usually ready to drop right after dinner. I guess that's the one good thing about the narcolepsy: when I'm ready to sleep, I sleep. Tylenol PM is usually enough to manage my pain at night, so I've been able to sleep through. Apparently, I twitch and moan a lot in my sleep, though, so I honestly can't say whether my sleep is restorative.
10. Each day I take __ pills & vitamins. (No comments, please) Neurontin: 400 mg 3x a day; Effexor XR: 150 mg once a day; Ritalin: 15 mg 2x a day; Ibuprofen, Darvocet, Flexeril...all as needed to manage pain.
11. Regarding alternative treatments I: find massage helps my pain levels, but only temporarily and some therapists are better than others. Acupuncture made my pain worse.
12. If I had to choose between an invisible illness or visible I would choose: HAHAHA, Silly question. None.
13. Regarding working and career: I don't work anymore, being on Social Security Disability. I'd much rather work and feel like I'm contributing to society and my family.
14. People would be surprised to know: How much I still manage to accomplish through the pain.
15. The hardest thing to accept about my new reality has been: My loss of independence. It's been REALLY hard to allow myself to depend on others financially, emotionally, everything. I still struggle with accepting it, and am thankful that Will seems to understand that it's not him, it's me.
16. Something I never thought I could do with my illness that I did was: Modeling. Harder than it looks.
17. The commercials about my illness: all sell some miracle drug that has horrible side effects and doesn't work for everybody.
18. Something I really miss doing since I was diagnosed is: Dancing. I love to go out dancing but I can rarely stay awake to go out at night, much less dance.
19. It was really hard to have to give up: My independence.
20. A new hobby I have taken up since my diagnosis is: Knitting. At least I can do it lying down.
21. If I could have one day of feeling normal again I would: Normal?? What's that? For me, normal is probably other people's "horrible". But, if I could go without pain and fatigue for one day I think I'd go traipse around NYC. I miss home.
22. My illness has taught me: To be patient with myself. I can't do everything in one day and perfection is an illusion.
23. Want to know a secret? One thing people say that gets under my skin is: "If you just ____________, you'll be better." Thanks for the advice attempt, but I've tried it all and have learned to deal.
24. But I love it when people: Accept me as I am.
25. My favorite motto, scripture, quote that gets me through tough times is: This too shall pass.
26. When someone is diagnosed I’d like to tell them: Be gentle with yourself. You'll have to make adjustments, but you CAN still live life fully.
27. Something that has surprised me about living with an illness is: That I am tougher than I thought. My good days would probably bring others to their knees and I still manage to accomplish things and enjoy my life.
28. The nicest thing someone did for me when I wasn’t feeling well was: Let me cry and vent and they still loved me.
29. I’m involved with Invisible Illness Week because: There are so many of us in the "But you don't look sick" category, and people need to be aware of just how debilitating these illnesses can be.
30. The fact that you read this list makes me feel: Grateful, like you actually care.
![[identity profile]](https://www.dreamwidth.org/img/silk/identity/openid.png){kind=small}
(no subject)
Date: 2009-09-12 05:30 pm (UTC)Hug
(no subject)
Date: 2009-09-13 12:16 am (UTC)(no subject)
Date: 2009-09-13 03:24 pm (UTC)#6 - One of my friends calls the first 2 hours of the morning her "thawing out period."
#s 17 & 23 (and 11 a bit) - Oh FUCK yeah. And trying new stuff? Well, sometimes you just want to stick with the devil you know.
*gentle hugs*
I haven't forgotten about the IM thing; I just haven't spent much time at the computer lately.