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Sep. 16th, 2009 03:41 pm![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
nilchanceHappy (er?) Invisible Illness week! I don't have the juice to do that daily essay thing this year, but it's IIW every week in my house anyway.
1. The illness(es) I live with are:
Fibromyalgia, intractable migraine, depression, and polycystic ovarian disorder.
2. I was diagnosed with it/them in the year:
Migraines, 2004. Fibromyalgia, 2007 (?). Depression, 2001. PCOS, 2001.
3. But I had symptoms since:
Migraines, since I was 7; this involved a lot of pain painpainpainPAIN until I cried, puked, crashed into sleep and woke up better.
Fibromyalgia really began with intensity in 2005 but I think my pain tolerance has been messed up since forever.
Depression-- uh, yeah. Preteen years were bad and involved pulling my hair out strand by strand to comfort myself. I cut, I had suicidal ideation. But I was finally diagnosed because my then-GP refused to grant an MRI or painkillers for my "headaches", told me I was malingering because my mom has MS, saw me crying with frustration and decided I was depressed. Fail.
With the PCOS, to put it bluntly, 've been bleeding onto my own feet since I first started bleeding.
4. The biggest adjustment I've had to make is:
Learning that I can't be who I was at 17, physically or emotionally, and that my softening body is not disgusting.
5. Most people assume:
I'm lazy.
6. The hardest part about mornings is:
Feeling like Derek Jeter went at me in a steroid rage.
7. My favorite medical TV show is:
... um. Dr. G, Medical Examiner?
8. A gadget I couldn't live without is:
The laptop is critical to my continued existence.
9. The hardest part about nights is:
Getting comfortable. Getting to sleep. Staying asleep.
10. Each day I take [?] pills & vitamins.
Cymbalta, Tramadol, Codeine, Benadryl, Zanaflex and Lyrica.
11. Regarding alternative treatments, I:
I did okay with acupuncture but it was too expensive. I practice reiki and it's good for sleep. My massage therapist is my favorite man living.
12. If I had to choose between an invisible illness and a visible one, I would choose:
Visible. If somebody is going to be a douchenozzle about disabilities, I would rather know in advance than find out later.
13. Regarding working and career:
... it sucks. My coworkers don't comprehend and ask me to do a thousand stupid physical things that cost them nothing and cost me days. My boss gives me guilt-trips about my sick days, tries to manage my health care and calls into question my competancy.
14. People would be surprised to know:
How many times I've come too close to killing myself.
15. The hardest thing to accept about my new reality is:
That there are people who will never empathize no matter how hard you work or try to explain. If you don't work, you should. If you do work, work harder. If you work hard, look happier about it. Etc.
16. Something I never thought I could do with my illness was:
Feel pretty?
17. The commercials about my illness:
I hate that stupid bakery-owning bitch.
18. Something I really miss doing since I was diagnosed:
Dancing. Running around all weekend. Going to movies without thinking about the flashing lights and the physical cost. Drinking wine. The ren faire. Trusting doctors.
19. It was really hard to give up:
Beating on myself for not being able to do it all.
20. A new hobby I've taken up since my diagnosis is:
Driving animals to new rescues/adoptive homes.
21. If I could have one day of feeling normal again, I would:
Spend it with my wife.
22. My illness has taught me:
To find the joy in among the struggle. There is no such thing as an easy year, but I'm happier these days than I've been in healthier times.
23. Want to know a secret? One thing people say (about my illness) that gets under my skin is:
You would feel so much better if you (took this drug / walked more / found Jesus / lived my life)... seriously, people, knock it off. What're the odds that you (hypothetical healthy you) know more about my condition than I do?
24. But I love it when people:
Acknowledge that this isn't easy.
25. My favorite motto, scripture, quote that gets me through tough times is:
"Be gentle with yourself. You are a child of the universe."
26. When someone is diagnosed I like to tell ask them:
Um. See above?
27. Something that has surprised me about living with an illness is:
How strong I am.
28. The nicest thing someone did for me when I wasn't feeling well was:
Smooshed me up in bed and called in to work for me.
29. I'm involved with Invisible Illness Week because:
I have it. I live it. I work with it. I'm married to it. We're all going there, so be kind.
30. The fact that you read this list makes me feel:
Overly verbose and crankypants.
1. The illness(es) I live with are:
Fibromyalgia, intractable migraine, depression, and polycystic ovarian disorder.
2. I was diagnosed with it/them in the year:
Migraines, 2004. Fibromyalgia, 2007 (?). Depression, 2001. PCOS, 2001.
3. But I had symptoms since:
Migraines, since I was 7; this involved a lot of pain painpainpainPAIN until I cried, puked, crashed into sleep and woke up better.
Fibromyalgia really began with intensity in 2005 but I think my pain tolerance has been messed up since forever.
Depression-- uh, yeah. Preteen years were bad and involved pulling my hair out strand by strand to comfort myself. I cut, I had suicidal ideation. But I was finally diagnosed because my then-GP refused to grant an MRI or painkillers for my "headaches", told me I was malingering because my mom has MS, saw me crying with frustration and decided I was depressed. Fail.
With the PCOS, to put it bluntly, 've been bleeding onto my own feet since I first started bleeding.
4. The biggest adjustment I've had to make is:
Learning that I can't be who I was at 17, physically or emotionally, and that my softening body is not disgusting.
5. Most people assume:
I'm lazy.
6. The hardest part about mornings is:
Feeling like Derek Jeter went at me in a steroid rage.
7. My favorite medical TV show is:
... um. Dr. G, Medical Examiner?
8. A gadget I couldn't live without is:
The laptop is critical to my continued existence.
9. The hardest part about nights is:
Getting comfortable. Getting to sleep. Staying asleep.
10. Each day I take [?] pills & vitamins.
Cymbalta, Tramadol, Codeine, Benadryl, Zanaflex and Lyrica.
11. Regarding alternative treatments, I:
I did okay with acupuncture but it was too expensive. I practice reiki and it's good for sleep. My massage therapist is my favorite man living.
12. If I had to choose between an invisible illness and a visible one, I would choose:
Visible. If somebody is going to be a douchenozzle about disabilities, I would rather know in advance than find out later.
13. Regarding working and career:
... it sucks. My coworkers don't comprehend and ask me to do a thousand stupid physical things that cost them nothing and cost me days. My boss gives me guilt-trips about my sick days, tries to manage my health care and calls into question my competancy.
14. People would be surprised to know:
How many times I've come too close to killing myself.
15. The hardest thing to accept about my new reality is:
That there are people who will never empathize no matter how hard you work or try to explain. If you don't work, you should. If you do work, work harder. If you work hard, look happier about it. Etc.
16. Something I never thought I could do with my illness was:
Feel pretty?
17. The commercials about my illness:
I hate that stupid bakery-owning bitch.
18. Something I really miss doing since I was diagnosed:
Dancing. Running around all weekend. Going to movies without thinking about the flashing lights and the physical cost. Drinking wine. The ren faire. Trusting doctors.
19. It was really hard to give up:
Beating on myself for not being able to do it all.
20. A new hobby I've taken up since my diagnosis is:
Driving animals to new rescues/adoptive homes.
21. If I could have one day of feeling normal again, I would:
Spend it with my wife.
22. My illness has taught me:
To find the joy in among the struggle. There is no such thing as an easy year, but I'm happier these days than I've been in healthier times.
23. Want to know a secret? One thing people say (about my illness) that gets under my skin is:
You would feel so much better if you (took this drug / walked more / found Jesus / lived my life)... seriously, people, knock it off. What're the odds that you (hypothetical healthy you) know more about my condition than I do?
24. But I love it when people:
Acknowledge that this isn't easy.
25. My favorite motto, scripture, quote that gets me through tough times is:
"Be gentle with yourself. You are a child of the universe."
26. When someone is diagnosed I like to tell ask them:
Um. See above?
27. Something that has surprised me about living with an illness is:
How strong I am.
28. The nicest thing someone did for me when I wasn't feeling well was:
Smooshed me up in bed and called in to work for me.
29. I'm involved with Invisible Illness Week because:
I have it. I live it. I work with it. I'm married to it. We're all going there, so be kind.
30. The fact that you read this list makes me feel:
Overly verbose and crankypants.
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no subject
Date: 2009-09-16 08:37 pm (UTC)Hugs
no subject
Date: 2009-09-16 08:45 pm (UTC)The fact that they may have illnesses in common is not a good enough reason to bring them together and I doubt either of them will appreciate being weighed solely as their illnesses and not their personalities.
no subject
Date: 2009-09-16 09:00 pm (UTC)I had no intention of turning nilchance into a 'circus attraction' and I know my boss is quite capable of finding her own support, but sometimes its good to hear from others that we might not otherwise hear about.
Sorry if this makes little sense to you, blame the diazepam!!!
no subject
Date: 2009-09-16 09:09 pm (UTC)Your overt intention may not have been to turn nilchance into a circus attraction. However, she made a very personal recollection in the form of this post and then, rather engage with her about it, or reflect on what she said, your reaction was "Hey, can I pass this on to my boss? She's sick too!"
I'm not speaking for anyone but myself. If Nilchance has something to say, I have absolutely no doubt that she's more than capable of saying it for herself. I found your query problematic. I said something about it. I don't need to hide behind Nilchance or vice versa, and it's insulting to both of us for you to suggest otherwise. If you think Nilchance needs someone else to be her mouthpiece, you haven't been reading this journal as much as I thought you had.
no subject
Date: 2009-09-16 10:11 pm (UTC)I am sorry if I offend you, but had already taken offence, otherwise would not have replied.
I do not believe Nilchance needs a mouthpiece.
no subject
Date: 2009-09-17 06:45 pm (UTC)/ my thoughts on yaoi
no subject
Date: 2009-09-17 07:09 pm (UTC)Thank you for your reply.
I shall now go back to reading stories and avoiding any personal information anyone wants to impart.
Hoping you are well today and continue to cope.
no subject
Date: 2009-09-16 08:38 pm (UTC)Fourteen made my throat close up and my eyes sting. I am SO GRATEFUL for all of us getting a chance to know part of who you are and appreciate the brilliance.
*offers you sincere, non-painful hugs and best wishes*
no subject
Date: 2009-09-17 06:46 pm (UTC)no subject
Date: 2009-09-16 09:24 pm (UTC)But yeah, it's tiresome to try a lot of stuff, hear people tell you more stuff to try and worse to be letdown when nothing helps. Here's to good days and understanding people ♥
no subject
Date: 2009-09-17 06:48 pm (UTC)Also, *hugs*
no subject
Date: 2009-09-17 08:58 pm (UTC)But I was referred to her by my acupuncture/massage person because he was thinking he was seeing me too often where he could do nothing but help me with pain relieve on a day to day basis. And because I'd started seeing him for not just the hip, but back and neck leading to three days bathroomfloorsickfests of migraines as well.
But basically the first session as she calls it was laying on a comfortable bench where she checked several times if this was a comfortable spot to lie in, so it didn't put any pressure on my sore points. Then she basically told me to relax and she would do small movements with my body. Start at the feet, lift a foot, the knee, bend gently and all I'd have to do was relax. Which I thought I was doing. But after she'd done the leg it felt as if it was several inches longer than the other. And so forth. Basically with one session she showed me that I was never relaxed, and therefore never gave my body any rest and the pain just accumulates.
The sessions is to rework my brain and body and learn it not to do it's habitual ways of tensing even when you don't know it's tensing. You're getting lessons sent home with you and they actually help. Unless I've forgotten and is already too far gone, or I've hurt myself by overdoing.
But for ex the neckpains I've had since I lifted too heavily on Sunday has only resulted in one migraine which is a definite win (when the neckpain usually don't give in for oh two weeks or so with several migraines, and none of them where my usual migraine meds help as this has nothing to do with expanding bloodvessels). It gives me tools to make my body rest so even if I have pain it doesn't cross the line into unforgivable pain.
It was like trying to relearn how not to limp after one of my months of hipjointfuckup was fixed, and it's so damn difficult it's laughable. It's like relearning how to breathe, as you're so used to having your body move in certain patterns and now you're telling it it can't nomore. I'm not saying it's for everyone, a co-worker didn't get much relieve at all and she has severe neckproblems. But for my body it worked to lower the pain from a 7-ish down to a 1 on most days. And 1 is what I'm used to by now, that 0 never even is on the mindmap. If I can walk and function and sleep and smile, I'm all good. Running isn't for everyone ;)
no subject
Date: 2009-09-17 12:42 am (UTC)no subject
Date: 2009-09-17 06:49 pm (UTC)Thank you.
no subject
Date: 2009-09-17 01:52 am (UTC)*hugs gently*
no subject
Date: 2009-09-17 06:50 pm (UTC)no subject
Date: 2009-09-17 11:54 am (UTC)no subject
Date: 2009-09-17 06:50 pm (UTC)no subject
Date: 2009-09-17 07:37 pm (UTC)And thank you.