Invisible Illness Week
I have an invisible illness. Well, actually I have several, but there is one in particular I want to talk about, one that newer readers might not even know about, because I have been in something close to "remission" since the surgery I had March 2008. This does *not* mean I'm cured for life. In fact, it's already starting to be a problem again. So, here's 30 things about my invisible illness you might not know:
1. The illness I live with is: Neurofibromatosis. In plain language, this means I have a tendency to grow (non-cancerous) tumors on my nerves. Depending on where the tumors grow, they may or may not cause physical problems. According to my doctor, I probably have several at the moment. The one that caused the most trouble was growing on my left sciatic nerve - the one that runs from the spine all the way down the leg. As it grew, it caused increasing amounts of pain and muscle spasms in my lower back and left leg. The first twinges of pain occurred in 1998 and it finally became so impossible to live with that I had it removed in 2008. The pain was sufficient to cause major life disruptions by 2003, and by 2006 I had to walk with a cane, because my left leg was too damaged to take my weight, and would often collapse under me. Removing the tumor fixed *that* problem. But the main thing about my illness is that I am always growing more. I've been having pain in my right leg recently, and I believe there's another tumor growing on the right sciatic nerve. It's not to 2006 levels yet, but it's heading there.
2. I was diagnosed with it in the year: 2006
3. But I had symptoms since: 1998
4. The biggest adjustment I’ve had to make is: Learning my limits, which may change from day to day.
5. Most people assume: the fact that I've been better since the surgery means I'm cured. I'm not.
6. The hardest part about mornings are: Getting out of bed. Especially if there was pain the night before.
7. My favorite medical TV show is: House. Not because of my illness (which they actually got wrong when they mentioned it, which ticked me off) but because I love the sarcasm.
8. A gadget I couldn’t live without is: Until the surgery, it was my cane. Now - nothing really. At least not until next time.
9. The hardest part about nights are: The pain that wakes you up and makes you sob and curl up into a ball and wish you could just cut your own damn leg off because at least then it would stop *hurting*.
10. Each day I take __ pills & vitamins. (No comments, please) When you combine all my invisible illnesses (which include depression, insomnia, and general anxiety disorder) I take 2 pills daily, plus extra when I have an anxiety attack or when the pain flares. Before my surgery I was on 5 pills daily - including the strongest opiates you could get without an IV
11. Regarding alternative treatments I: have tried massage (helps for awhile) and reiki (also helps for awhile). Neither helps for longer than a day or two, max.
12. If I had to choose between an invisible illness or visible I would choose: Depends on the illness. There are plenty of times I wish people could understand that just because I look fine, doesn't mean I *am*. In particular, I wish my employers could realize that if I'm sometimes a little late to work, or don't get as much done as they think I should, it's not because I'm lazy.
13. Regarding working and career: The intermittent nature of my illness means that I can usually work full time, but I miss a lot of work when there are flare ups. I have been lucky in that academia is usually pretty accommodating. I've had to have graduate assistants do some of the shifting and carrying books that I would normally do. And for the year before my surgery I was allowed to work from home part of the week - I don't think I could have made it otherwise.
14. People would be surprised to know: Tumors can cause major problems even when they *aren't* cancer.
15. The hardest thing to accept about my new reality has been: Accepting that this is my life, and that it will keep happening, again and again and again, forever.
16. Something I never thought I could do with my illness that I did was: Finish grad school.
17. The commercials about my illness: The Children's Tumor Foundation (which advocates for children with NF) has a billboard with a quote along the lines of "What will you do when you find out your child has Neurofibromatosis."
18. Something I really miss doing since I was diagnosed is: Not having to add the "if I feel well that day" to every plan I make.
19. It was really hard to have to give up: thinking of myself as healthy.
20. A new hobby I have taken up since my diagnosis is: I haven't really taken up anything new. Luckily I always preferred low key activities like reading and playing video games to the more active stuff anyway.
21. If I could have one day of feeling normal again I would: Well, the fact that my symptoms come and go means that I do have days of feeling normal, which means the rest of the time is even harder.
22. My illness has taught me: I'm one tough bitch.
23. Want to know a secret? One thing people say that gets under my skin is: "I can imagine!" No, you can't. Really.
24. But I love it when people: Accept the fact that my symptoms are unpredictable, and don't assume that because I felt ok today, I'll be fine tomorrow.
25. My favorite motto, scripture, quote that gets me through tough times is: Since my symptoms are usually worse at night: "Cast me gently into morning, for the night has been unkind." - Sarah McLachlan.
26. When someone is diagnosed I’d like to tell them: Don't overdo it on the days you feel good. It'll make the days to follow that much worse. Learn your limits.
27. Something that has surprised me about living with an illness is: You can bear a lot when there's no other choice.
28. The nicest thing someone did for me when I wasn’t feeling well was: Brought me food when I was complaining on the phone that I was hungry but didn't feel up to going out to get something.
29. I’m involved with Invisible Illness Week because: Too few people understand that illnesses don't have to be obvious to rule your life.
30. The fact that you read this list makes me feel: Thankful that you cared enough to get this far, and hopeful that you've learned something :)
1. The illness I live with is: Neurofibromatosis. In plain language, this means I have a tendency to grow (non-cancerous) tumors on my nerves. Depending on where the tumors grow, they may or may not cause physical problems. According to my doctor, I probably have several at the moment. The one that caused the most trouble was growing on my left sciatic nerve - the one that runs from the spine all the way down the leg. As it grew, it caused increasing amounts of pain and muscle spasms in my lower back and left leg. The first twinges of pain occurred in 1998 and it finally became so impossible to live with that I had it removed in 2008. The pain was sufficient to cause major life disruptions by 2003, and by 2006 I had to walk with a cane, because my left leg was too damaged to take my weight, and would often collapse under me. Removing the tumor fixed *that* problem. But the main thing about my illness is that I am always growing more. I've been having pain in my right leg recently, and I believe there's another tumor growing on the right sciatic nerve. It's not to 2006 levels yet, but it's heading there.
2. I was diagnosed with it in the year: 2006
3. But I had symptoms since: 1998
4. The biggest adjustment I’ve had to make is: Learning my limits, which may change from day to day.
5. Most people assume: the fact that I've been better since the surgery means I'm cured. I'm not.
6. The hardest part about mornings are: Getting out of bed. Especially if there was pain the night before.
7. My favorite medical TV show is: House. Not because of my illness (which they actually got wrong when they mentioned it, which ticked me off) but because I love the sarcasm.
8. A gadget I couldn’t live without is: Until the surgery, it was my cane. Now - nothing really. At least not until next time.
9. The hardest part about nights are: The pain that wakes you up and makes you sob and curl up into a ball and wish you could just cut your own damn leg off because at least then it would stop *hurting*.
10. Each day I take __ pills & vitamins. (No comments, please) When you combine all my invisible illnesses (which include depression, insomnia, and general anxiety disorder) I take 2 pills daily, plus extra when I have an anxiety attack or when the pain flares. Before my surgery I was on 5 pills daily - including the strongest opiates you could get without an IV
11. Regarding alternative treatments I: have tried massage (helps for awhile) and reiki (also helps for awhile). Neither helps for longer than a day or two, max.
12. If I had to choose between an invisible illness or visible I would choose: Depends on the illness. There are plenty of times I wish people could understand that just because I look fine, doesn't mean I *am*. In particular, I wish my employers could realize that if I'm sometimes a little late to work, or don't get as much done as they think I should, it's not because I'm lazy.
13. Regarding working and career: The intermittent nature of my illness means that I can usually work full time, but I miss a lot of work when there are flare ups. I have been lucky in that academia is usually pretty accommodating. I've had to have graduate assistants do some of the shifting and carrying books that I would normally do. And for the year before my surgery I was allowed to work from home part of the week - I don't think I could have made it otherwise.
14. People would be surprised to know: Tumors can cause major problems even when they *aren't* cancer.
15. The hardest thing to accept about my new reality has been: Accepting that this is my life, and that it will keep happening, again and again and again, forever.
16. Something I never thought I could do with my illness that I did was: Finish grad school.
17. The commercials about my illness: The Children's Tumor Foundation (which advocates for children with NF) has a billboard with a quote along the lines of "What will you do when you find out your child has Neurofibromatosis."
18. Something I really miss doing since I was diagnosed is: Not having to add the "if I feel well that day" to every plan I make.
19. It was really hard to have to give up: thinking of myself as healthy.
20. A new hobby I have taken up since my diagnosis is: I haven't really taken up anything new. Luckily I always preferred low key activities like reading and playing video games to the more active stuff anyway.
21. If I could have one day of feeling normal again I would: Well, the fact that my symptoms come and go means that I do have days of feeling normal, which means the rest of the time is even harder.
22. My illness has taught me: I'm one tough bitch.
23. Want to know a secret? One thing people say that gets under my skin is: "I can imagine!" No, you can't. Really.
24. But I love it when people: Accept the fact that my symptoms are unpredictable, and don't assume that because I felt ok today, I'll be fine tomorrow.
25. My favorite motto, scripture, quote that gets me through tough times is: Since my symptoms are usually worse at night: "Cast me gently into morning, for the night has been unkind." - Sarah McLachlan.
26. When someone is diagnosed I’d like to tell them: Don't overdo it on the days you feel good. It'll make the days to follow that much worse. Learn your limits.
27. Something that has surprised me about living with an illness is: You can bear a lot when there's no other choice.
28. The nicest thing someone did for me when I wasn’t feeling well was: Brought me food when I was complaining on the phone that I was hungry but didn't feel up to going out to get something.
29. I’m involved with Invisible Illness Week because: Too few people understand that illnesses don't have to be obvious to rule your life.
30. The fact that you read this list makes me feel: Thankful that you cared enough to get this far, and hopeful that you've learned something :)