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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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Date: 2012-08-08 11:55 pm (UTC)no subject
Date: 2012-08-09 05:44 pm (UTC)