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brightrosefoxBecause the meme I originally linked to on Facebook kind of irritated me and some of my more able-bodied friends with the author's answers, I'm doing my own.
(http://www.butyoudontlooksick.com/articles/written-by-christine/30-things-about-my-invisible-illness-you-may-not-know/)
1. The illness I live with is: *deep breath* Cerebral palsy (spastic-ataxic hemiplegia), Spastic Hypertonia (with spastic hemiparesis and intention tremors), Fibromyalgia, Temporal Lobe Epilepsy, Asthma, Raynaud's Disease (primary), Sensory Integration Dysfunction, Attention Deficit Disorder (non-hyperactive), Dyscalculia, Obsessive-Compulsive Disorder (mild), Sciatica, Hyperlordosis, Migraines, Non-Allergic Rhinitis (mainly gustatory), Anorexia Nervosa (recovering), Chondromalacia Patella, Joint Pain (overall), Clinical Depression (mild to moderate), Anxiety Disorder (general and social)
2. I was diagnosed with it in the year: Birth in April 1979 up to age 32?
3. But I had symptoms since: Birth.
4. The biggest adjustment I've had to make is: Understanding that there are many things I can do but there are many things I need to forever compromise on and compensate for. Like, I really can do lots of things but it will hurt like hell, it will be quite difficult, and I must find my own methods. Also, really needing to make all of that known and understood so people understand that I have Medical Issues and can't do everything the way they do.
5. Most people assume: That I don't look disabled. That I'm really cute when I'm angry and therefore I can't actually get angry. That I am completely weak in every way.
6. The hardest part about mornings are: Waking up without agony. Getting out of bed without agony. Crying myself awake because it hurts too much. Actually waking up at a decent morning hour before 11:00 AM.
7. My favorite medical TV show is: I'm not sure I have one. Any SF/F show featuring futuristic or magical healing tools? Babylon 5, Star Trek TNG, Star Trek DS9, Farscape, Star Trek VOY, Star Trek ENT, Battlestar Galactica, Caprica, and Futurama come to mind. And I loved M*A*S*H when I was younger.
8. A gadget I couldn’t live without is: Laptop, Smartphone.
9. The hardest part about nights are: Sleep without constant pain and constant waking. Nightmares. Nightmares with pain.
10. Each day I take: Seven or eight pharmaceutical pills, at least twice as many supplement and vitamin pills. Did you want the whole list?
11. Regarding alternative treatments: I was actually raised on them, as my mother didn't really trust pharmaceuticals (I was, of course, vaccinated, since you don't fuck with that, and vaccines are important to me). When I was younger, I echoed my mom's somewhat fervent desire for supplements and alternatives over prescriptions, and as a result I didn't get properly medically treated for epilepsy and fibromyalgia for many years. Eventually, I got the fuck over that and started taking pharmaceutical drugs that helped so much and I was grateful and felt stupid. I still go for alternative treatments when I can, but I carefully balance them with the pharmaceuticals. I refuse to be one of those people who thinks All Big Pharma Is Evil and Alternative Treatments Are The Best Way To Save Us. I am profoundly grateful for vaccines, for seizure drugs, for depression and anxiety drugs, for pain drugs. I don't know where I would be without them. But at the same time, if I can find an alternative or supplemental treatment that works better for me for an issue, I will go with that. It's called supplement and alternative for a reason.
12. If I had to choose between an invisible illness or visible I would choose: Both. The cerebral palsy classifies as visible, although mine is mild enough to be less visible to those who aren't looking for it. And those symptoms are very evident when I am tired enough. The rest of the pack, being mostly invisible, classify as ice-breaking conversation starters to bounce off the cerebral palsy. I'd rather someone see me hobbling, ask questions, then learn about the rest.
13. Regarding working and career: I worked in library settings from age 18 to age 30. Some people expressed surprise that I was able to work for so long without falling apart, including the judge who granted me SSDI. But that proved how strong I was. I miss working. I miss lots of things. But now that I am on disability from my government, I plan on making the most of doctors and healing and treatments, so I can get on with my desired career as a novelist. I want to write fantasy novels and stories and I think I can manage that.
14. People would be surprised to know: That I have so many issues, because plenty of people have expressed wonder and shock that I have stuff really wrong with me (See: But you don't look disabled!).
15. The hardest thing to accept about my new reality has been: New reality? I've been like this since I was a child, so I've already accepted. But I suppose my newest reality is that the government deems me disabled enough to receive money and assistance, and at first that was hard to accept. I was bouncing between "Yay, they think I'm disabled and worth it! I'm so relieved!" and "Aww, shit, they think I'm disabled and worth it. I'm sad now." In fact, I kind of felt like Fry in that Futurama episode "A Fishfull Of Dollars" when he learns that he has billions in his bank account from his being frozen for a thousand years with his account earning all that interest, and his response is to hyperventilate, foam at the mouth, and collapse. When I saw that my back-pay had been deposited, my heart skipped a beat and I started whimpering.
I've watched the system being constantly abused by citizens who aren't disabled and somehow got through and that right there is hard to accept without blackout raging anger. Like, I and many truly disabled friends spent years getting denied and waiting and waiting before we were approved, and these cheating assholes worm their way in? Blackout raging anger. Yeah, that's hard to accept.
16. Something I never thought I could do with my illness that I did was: Survive. There were doctors who honestly thought I would not live past thirty without severe issues. On one hand, they had a point, as I started snowballing downhill once I turned thirty. But three years later, I am alive and doing all right. I plan on being ninety and playing wheelchair games with my husband.
17. The commercials about my illness: Never seem to show people under the age of forty. Younger people have these problems too!
18. Something I really miss doing since I was diagnosed is: I was never good at it, but dancing. If I hadn't been born with the brain damage that led to all these disorders, I probably would have been a dancer and martial artist. I mean, a dancer and a martial artist without disabilities. I know there are plenty of disabled dancers and martial artists. I know I could technically train to become a dancer and martial artist with/despite my disabilities. My point is, I wish I could be an "able-bodied" dancer and martial artist.
19. It was really hard to have to give up: That gymnastics class when I was seven and that tai chi class when I was sixteen. And a bunch of other stuff. Like physical work that I really wanted to keep doing. Mental and intellectual work. Actually feeling smart, even though I hate the whole "Intelligent Quotient" concept. I mean, I used to win high school spelling competitions without trying, leading the other kids to cheer like sports fanatics and chant my name until they were hoarse. And when I came in second place, they chanted even harder and I spent weeks being treated like a champion, being asked to spell "popcorn" and "Doritos" in the cafeteria. Now my brain actually stutters. Fuck a bunch of that.
20. A new hobby I have taken up since my diagnosis is: Qigong exercises, holistic skin care.
21. If I could have one day of feeling normal again I would: Not have it. Some of my medicines give me a few hours of feeling some kind of "normal" and I just keep going. So I would just do what I do. However, if I really wanted to take advantage of feeling normal for a whole day, I would go dancing and do some serious martial arts training. And then I would curl up crying at the end, because it was only one day and it was like a massive fucking tease.
22. My illness has taught me: Everyone is fallible. No matter how smart, no matter how knowledgeable, no matter what they study. Also that the only person who truly knows me and my disabilities is me. And that anyone who claims to have my "cure" or "permanent treatment" is probably full of shit. The world is full of things we don't understand.
Also? It has taught me to laugh. A lot. To make fun of my disabilities. To enjoy silly stories, to make other people laugh. That is so important. I need to laugh as much as I can.
23. Want to know a secret? I twitch and feel bubbling anger whenever someone tries to explain what is wrong with me without truly knowing me. I mean, I have strong desires to punch them, or throw them against a wall, or do something rather violent and vicious. And I do nothing because I just don't want to hurt someone who is probably just assuming they can help.
24. But I love it when people: Listen. Understand. Express honest sympathy and/or empathy. Offer help in little ways. Ask me questions. Honestly want to know what is wrong and how to help in their own ways. Not insist that they can "cure" me. Listen. Laugh with me. Put me at ease. Again, listen to me.
25. My favorite motto, scripture, quote that gets me through tough times is: "It's all good."
26. When someone is diagnosed I'd like to tell them: You are not alone. You are never alone. It won't be easy. It may never be easy. You are your own best advocate, and you will need yourself. Make sure you have a support group. Make sure you are loved and understood. But mostly, treat yourself well. Laugh with yourself. Be as happy as you can. Treat yourself well.
27. Something that has surprised me about living with an illness is: I have been surprised by the community. Other people dealing with this? Advocating for our rights to live as any "able bodied" person? And I can help just by writing? Sign me up.
28. The nicest thing someone did for me when I wasn't feeling well was: There is no one thing. It is the friends who offered to drive me places. It is the friends who helped me with chores and errands. It is the friends who helped stretch out my limbs and massage my muscles and gave me very helpful information. It is the friends who mad me laugh until I cried breathlessly. It is the friends who dedicated things to me. It is the friends who told me how deeply they loved me. It is the friends who really listen and understand and know me without question.
29. I'm involved with Invisible Illness Week because: Wait, we have a week?
30. The fact that you read this list makes me feel: Maybe like I’m doing something right. Maybe.
(http://www.butyoudontlooksick.com/articles/written-by-christine/30-things-about-my-invisible-illness-you-may-not-know/)
1. The illness I live with is: *deep breath* Cerebral palsy (spastic-ataxic hemiplegia), Spastic Hypertonia (with spastic hemiparesis and intention tremors), Fibromyalgia, Temporal Lobe Epilepsy, Asthma, Raynaud's Disease (primary), Sensory Integration Dysfunction, Attention Deficit Disorder (non-hyperactive), Dyscalculia, Obsessive-Compulsive Disorder (mild), Sciatica, Hyperlordosis, Migraines, Non-Allergic Rhinitis (mainly gustatory), Anorexia Nervosa (recovering), Chondromalacia Patella, Joint Pain (overall), Clinical Depression (mild to moderate), Anxiety Disorder (general and social)
2. I was diagnosed with it in the year: Birth in April 1979 up to age 32?
3. But I had symptoms since: Birth.
4. The biggest adjustment I've had to make is: Understanding that there are many things I can do but there are many things I need to forever compromise on and compensate for. Like, I really can do lots of things but it will hurt like hell, it will be quite difficult, and I must find my own methods. Also, really needing to make all of that known and understood so people understand that I have Medical Issues and can't do everything the way they do.
5. Most people assume: That I don't look disabled. That I'm really cute when I'm angry and therefore I can't actually get angry. That I am completely weak in every way.
6. The hardest part about mornings are: Waking up without agony. Getting out of bed without agony. Crying myself awake because it hurts too much. Actually waking up at a decent morning hour before 11:00 AM.
7. My favorite medical TV show is: I'm not sure I have one. Any SF/F show featuring futuristic or magical healing tools? Babylon 5, Star Trek TNG, Star Trek DS9, Farscape, Star Trek VOY, Star Trek ENT, Battlestar Galactica, Caprica, and Futurama come to mind. And I loved M*A*S*H when I was younger.
8. A gadget I couldn’t live without is: Laptop, Smartphone.
9. The hardest part about nights are: Sleep without constant pain and constant waking. Nightmares. Nightmares with pain.
10. Each day I take: Seven or eight pharmaceutical pills, at least twice as many supplement and vitamin pills. Did you want the whole list?
11. Regarding alternative treatments: I was actually raised on them, as my mother didn't really trust pharmaceuticals (I was, of course, vaccinated, since you don't fuck with that, and vaccines are important to me). When I was younger, I echoed my mom's somewhat fervent desire for supplements and alternatives over prescriptions, and as a result I didn't get properly medically treated for epilepsy and fibromyalgia for many years. Eventually, I got the fuck over that and started taking pharmaceutical drugs that helped so much and I was grateful and felt stupid. I still go for alternative treatments when I can, but I carefully balance them with the pharmaceuticals. I refuse to be one of those people who thinks All Big Pharma Is Evil and Alternative Treatments Are The Best Way To Save Us. I am profoundly grateful for vaccines, for seizure drugs, for depression and anxiety drugs, for pain drugs. I don't know where I would be without them. But at the same time, if I can find an alternative or supplemental treatment that works better for me for an issue, I will go with that. It's called supplement and alternative for a reason.
12. If I had to choose between an invisible illness or visible I would choose: Both. The cerebral palsy classifies as visible, although mine is mild enough to be less visible to those who aren't looking for it. And those symptoms are very evident when I am tired enough. The rest of the pack, being mostly invisible, classify as ice-breaking conversation starters to bounce off the cerebral palsy. I'd rather someone see me hobbling, ask questions, then learn about the rest.
13. Regarding working and career: I worked in library settings from age 18 to age 30. Some people expressed surprise that I was able to work for so long without falling apart, including the judge who granted me SSDI. But that proved how strong I was. I miss working. I miss lots of things. But now that I am on disability from my government, I plan on making the most of doctors and healing and treatments, so I can get on with my desired career as a novelist. I want to write fantasy novels and stories and I think I can manage that.
14. People would be surprised to know: That I have so many issues, because plenty of people have expressed wonder and shock that I have stuff really wrong with me (See: But you don't look disabled!).
15. The hardest thing to accept about my new reality has been: New reality? I've been like this since I was a child, so I've already accepted. But I suppose my newest reality is that the government deems me disabled enough to receive money and assistance, and at first that was hard to accept. I was bouncing between "Yay, they think I'm disabled and worth it! I'm so relieved!" and "Aww, shit, they think I'm disabled and worth it. I'm sad now." In fact, I kind of felt like Fry in that Futurama episode "A Fishfull Of Dollars" when he learns that he has billions in his bank account from his being frozen for a thousand years with his account earning all that interest, and his response is to hyperventilate, foam at the mouth, and collapse. When I saw that my back-pay had been deposited, my heart skipped a beat and I started whimpering.
I've watched the system being constantly abused by citizens who aren't disabled and somehow got through and that right there is hard to accept without blackout raging anger. Like, I and many truly disabled friends spent years getting denied and waiting and waiting before we were approved, and these cheating assholes worm their way in? Blackout raging anger. Yeah, that's hard to accept.
16. Something I never thought I could do with my illness that I did was: Survive. There were doctors who honestly thought I would not live past thirty without severe issues. On one hand, they had a point, as I started snowballing downhill once I turned thirty. But three years later, I am alive and doing all right. I plan on being ninety and playing wheelchair games with my husband.
17. The commercials about my illness: Never seem to show people under the age of forty. Younger people have these problems too!
18. Something I really miss doing since I was diagnosed is: I was never good at it, but dancing. If I hadn't been born with the brain damage that led to all these disorders, I probably would have been a dancer and martial artist. I mean, a dancer and a martial artist without disabilities. I know there are plenty of disabled dancers and martial artists. I know I could technically train to become a dancer and martial artist with/despite my disabilities. My point is, I wish I could be an "able-bodied" dancer and martial artist.
19. It was really hard to have to give up: That gymnastics class when I was seven and that tai chi class when I was sixteen. And a bunch of other stuff. Like physical work that I really wanted to keep doing. Mental and intellectual work. Actually feeling smart, even though I hate the whole "Intelligent Quotient" concept. I mean, I used to win high school spelling competitions without trying, leading the other kids to cheer like sports fanatics and chant my name until they were hoarse. And when I came in second place, they chanted even harder and I spent weeks being treated like a champion, being asked to spell "popcorn" and "Doritos" in the cafeteria. Now my brain actually stutters. Fuck a bunch of that.
20. A new hobby I have taken up since my diagnosis is: Qigong exercises, holistic skin care.
21. If I could have one day of feeling normal again I would: Not have it. Some of my medicines give me a few hours of feeling some kind of "normal" and I just keep going. So I would just do what I do. However, if I really wanted to take advantage of feeling normal for a whole day, I would go dancing and do some serious martial arts training. And then I would curl up crying at the end, because it was only one day and it was like a massive fucking tease.
22. My illness has taught me: Everyone is fallible. No matter how smart, no matter how knowledgeable, no matter what they study. Also that the only person who truly knows me and my disabilities is me. And that anyone who claims to have my "cure" or "permanent treatment" is probably full of shit. The world is full of things we don't understand.
Also? It has taught me to laugh. A lot. To make fun of my disabilities. To enjoy silly stories, to make other people laugh. That is so important. I need to laugh as much as I can.
23. Want to know a secret? I twitch and feel bubbling anger whenever someone tries to explain what is wrong with me without truly knowing me. I mean, I have strong desires to punch them, or throw them against a wall, or do something rather violent and vicious. And I do nothing because I just don't want to hurt someone who is probably just assuming they can help.
24. But I love it when people: Listen. Understand. Express honest sympathy and/or empathy. Offer help in little ways. Ask me questions. Honestly want to know what is wrong and how to help in their own ways. Not insist that they can "cure" me. Listen. Laugh with me. Put me at ease. Again, listen to me.
25. My favorite motto, scripture, quote that gets me through tough times is: "It's all good."
26. When someone is diagnosed I'd like to tell them: You are not alone. You are never alone. It won't be easy. It may never be easy. You are your own best advocate, and you will need yourself. Make sure you have a support group. Make sure you are loved and understood. But mostly, treat yourself well. Laugh with yourself. Be as happy as you can. Treat yourself well.
27. Something that has surprised me about living with an illness is: I have been surprised by the community. Other people dealing with this? Advocating for our rights to live as any "able bodied" person? And I can help just by writing? Sign me up.
28. The nicest thing someone did for me when I wasn't feeling well was: There is no one thing. It is the friends who offered to drive me places. It is the friends who helped me with chores and errands. It is the friends who helped stretch out my limbs and massage my muscles and gave me very helpful information. It is the friends who mad me laugh until I cried breathlessly. It is the friends who dedicated things to me. It is the friends who told me how deeply they loved me. It is the friends who really listen and understand and know me without question.
29. I'm involved with Invisible Illness Week because: Wait, we have a week?
30. The fact that you read this list makes me feel: Maybe like I’m doing something right. Maybe.
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no subject
Date: 2012-08-08 11:55 pm (UTC)no subject
Date: 2012-08-09 05:44 pm (UTC)no subject
Date: 2012-08-09 02:14 am (UTC)I especially liked your answer to: - I'd never thought about it that way but I think thats how I'd feel too.
How do you find Qi Gong? I recently bought a DVD on it as I think it would help Me.
no subject
Date: 2012-08-09 05:47 pm (UTC)And I've done it before, too. I tested a medication that actually allowed me to dance and move and flow for about 24 hours, and the after-effects lasted around a week. But the "comedown" though mild, was devastating.
no subject
Date: 2012-08-09 06:35 pm (UTC)I think you would love the gentle, flowing movements in Qi Gong exercise. And perhaps your Love might as well. His name is Perseus, right? He would enjoy the deep connections he can make with you.
no subject
Date: 2012-08-11 12:09 am (UTC)I found a local college will be starting Qi Gong classes next month but Im not sure I can/want to do it in that sort of environment.
Perseus has done a few martial arts over the years and watched the video with Me. :-)
no subject
Date: 2012-08-11 12:41 am (UTC)no subject
Date: 2012-08-09 02:33 am (UTC)*hugs*
no subject
Date: 2012-08-09 06:04 pm (UTC)no subject
Date: 2012-08-09 04:21 am (UTC)no subject
Date: 2012-08-09 05:53 pm (UTC)(And I say that knowing that those drugs have such a bitter taste from the titanium dioxide coating, I have to put food-grade botanical oils on them to swallow them down!)
This is for smiles, not to mock your conditions.
Date: 2012-08-09 01:49 pm (UTC)5. In their defense, I'm sure you are very cute when angry. However, probably cuter when not angry. Cuter is always better.
7. There was an episode of Babylon 5 in which a "healer" uses a strange alien device to cure people's ailments, and she was using it to heal the poor who didn't have access to good medicine. Turned out that the machine worked by siphoning off the healer's life and transferring it to others, and the healer, who had a terminal disease herself, knew this and willingly did it anyway, knowing it would eventually kill her. Then a killer takes her hostage after being wounded in a fight and forces her to heal him; she reverses the machine's settings and inflicts her illness on him, incapacitating him.
10. I know you don't like people telling you what meds to take, but that whole "bathing in the blood of a hundred virgins" thing? Works better than you'd think. I'm actually 312 years old.
Plus, virgins are delicious with butter.
17. You need to make a commercial. You're bringing sexy back to fibro! Wooooo!
18. Dancer-Martial Artists are tough cookies. They have really good flexibility and can kick really high and move fast. I have to punch them in the face to slow them down. Cheeky dancers.
22. It should be pointed out that Robert Smith of The Cure probably does have the cure. I mean, he wouldn't have named the band that if it weren't true, right?
23. Am I a bad person for wanting to watch you punch someone?
24. Actually, I do enjoy reading what you write. Granted, my contributions are usually valueless (much like this comment), but maybe it's better that way.
28. Honestly, I hope I have made you laugh at some point in time. It is the one thing I like to give to people. And that's me being serious, for once.
29. It's right there on the calendar between "Krill Week" and "Pudding Awareness Week." Mmmmmmpudding.
30. I'm probably the reason you said "maybe". ;-)
Re: This is for smiles, not to mock your conditions.
Date: 2012-08-09 05:49 pm (UTC)I loved that Bab 5 episode. Remember when Marcus used that machine to heal Ivanova while sacrificing himself? That was some damn good acting. I'm sorry Claudia Christian was having problems with the producers, because I was sad to see her go.
Re: This is for smiles, not to mock your conditions.
Date: 2012-08-09 05:59 pm (UTC)Poor Marcus. And yeah, it was sad to see Ivanova go. She had some of the best lines in the series.
Re: This is for smiles, not to mock your conditions.
Date: 2012-08-09 06:30 pm (UTC)Let's see. B5, Futurama, Star Trek TNG, and Star Trek DS9 really shaped my teenage years. I'm trying to remember the shows made after the year 2001 that truly resonated with me like that. I mean, aside from the "new" Doctor Who (2005-onward).
Re: This is for smiles, not to mock your conditions.
Date: 2012-08-09 06:37 pm (UTC)Man, B5 even did the "doctor addicted to his own meds" thing before that got all popular. They also invented the Department of Homeland Security before 9/11 invented it for us. Oh Straczynski, you are truly mighty!
Re: This is for smiles, not to mock your conditions.
Date: 2012-08-09 06:43 pm (UTC)Yeah, I keep wondering if Straczynski was psychic in some way. I mean, seriously it blew my mind looking back on everything...
Re: This is for smiles, not to mock your conditions.
Date: 2012-08-09 06:54 pm (UTC)ST:E just didn't grab me like other Treks did. And ST:V was... ok. Not terrible; just not as good as TNG and DS9. Of course, I'm all old and think ST:TOS is THE ONE TRUE WAY.
Re: This is for smiles, not to mock your conditions.
Date: 2012-08-09 07:08 pm (UTC)I was less of a fan of ST:TOS. But that's probably because I grew up with the spin-offs. ;)
Re: This is for smiles, not to mock your conditions.
Date: 2012-08-09 06:03 pm (UTC)5. This is true. I can never stop being cute. It's a curse! But a cute curse.
7. That episode was amazing. Also, poor Marcus!
10. Wait, really? Oh, shit, I need to find a hundred virgins. BRB, finding minions! Also, this is gonna sound awful, but can I look in churches?? Mmm, butter.
17. I could mimic Justin Timberlake with canes and wheelchairs! It'll be like the video for Lady Gaga's "Paparazzi" only more natural and cuter.
18. Not if they wear lobster helmets and use ink defense glands. *Zoidberg whooping noises, scuttling away*
22. Sigh. Now I'm going to have to bathe in the blood of Robert Smith! Okay, then. Off to find some butcher knives.
23. Nope. Maybe I am?
24. Valueless? Are you kidding? They actually brighten my day - seriously. I am really glad we know each other. Even though I haven't done LJDQ in a while, but that's because I can't think up witty enough answers.
28. You have. Oh, you have. Again, I am really glad to know you. I hope we can meet one day.
29. PUDDING. Ooh, that reminds me, I have some of those Jello Temptation puddings in Double Chocolate Pie and Strawberry Cheesecake - no sucralose. Jealous yet?
30. You are ONLY ONE on the reasons. ;)
no subject
Date: 2012-08-11 12:28 pm (UTC)