Invisible Illness Week Sept 14-20
Sep. 17th, 2009 08:57 am![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
helwenI wasn't going to do this one, but then I thought maybe I'd support all my friends who have invisible illnesses. And really, when you think about it, there are a lot of illnesses that aren't visible -- maybe people just need to stop looking at only the surface :P Although many folks also try to hide the things they deal with on a daily basis too, for various reasons so... well anyway, here's mine.
1. The illness I live with is: allergies, asthma, various joint and muscle injuries, and possibly some other things that I don't want to get into because I'm still figuring things out, however depression seems to be a side effect of whatever it is.
2. I was diagnosed with it in the year: Generally suffering from allergies in 1979 but no specific testing until 1981 when I returned to the States and had 6 bloody noses in one week.
3. But I had symptoms since: My mom says since grammar school but that was her and the purple lilacs. I started being allergic to pretty much everything that floats in the air in high school. Hong Kong has an inordinate amount of mold and mildew...
I also have a food allergy but didn't start discovering it until the 80s and then finally figured it out a few years ago. I can have some regular cane sugar -- the more processed the better. I can't have a lot of it. I also can't have raw cane sugar products _at all_, unless they're organic. Some of my friends have seen what happens when I have something with too much cane sugar in it -- fortunately one of them saw what was happening (a red flush spreading up my neck) before it affected my lungs so I was able to take some meds before the full effect could hit.
Asthma diagnosis was in 1981. It didn't slow me down significantly for a long time, as I was into ballet, synchronized swimming and scuba diving, which all work to improve your lung capacity and general fitness. Then I got walking pneumonia and bronchitis one summer, and bronchitis a number of summers after that.
Joint and muscle issues -- flat feet and a slight curvature and twist in the lower spine, leading to bad knees, "interesting" hips, oh and I also had corrective surgery to my right shoulder.
4. The biggest adjustment I’ve had to make is: Checking labels, and deciding whether or not to bring my meds with me. Every day is different. Being adaptive to whatever my body is willing to give that day. Everything takes longer to do, I can't do as much as I used to do because the energy is used up faster.
5. Most people assume: that I'm fine and can do most anything I want to do. That might be because I tend to take that attitude myself, but it isn't true, and I'm trying to learn to adapt to that truth and not view it as failure.
6. The hardest part about mornings are: Checking to see how my breathing is, what stretches I might need to do, what things I may need to postpone to another day.
7. My favorite medical TV show is: none
8. A gadget I couldn’t live without is: um..... ? Not a gadget, but I really like having my husband around -- he helps to make a lot more things possible for me.
9. The hardest part about nights are: Sometimes breathing. Sometimes grinding my teeth (L wakes me up if that happens so I can put in my mouth guard) -- although that's been happening less often since we started kung fu. Sometimes my right leg, back, shoulders or neck hurt too much. Sometimes I just wake up a lot.
10. Each day I take _ pills & vitamins: Nothing daily. Multi-vitamin on days I don't think I'm getting enough veggies, allergy and breathing stuff as needed, anti-inflammatories as needed.
11. Regarding alternative treatments I: Have a homeopathic for bronchitis that I take whenever the lungs are starting to be wheezy so I don't always have to use the inhaler with the steroids :P Have some tinctures too for various things, and also either have nettle tea or throw nettles into soups sometimes, as variations on taking nettle for allergies. Self-accupressure is also my friend :)
12. If I had to choose between an invisible illness or visible I would choose: I'd rather not have either, thanks. But more importantly, I'd rather not have people judge what I can and can't do based on an illness, since they're often wrong.
13. Regarding working and career: Well, I'm not an active MT anymore since the shoulder surgery, but am doing some spot work. Getting more into other things now. I have the true luxury of being able to do things at home, where I can take a break whenever I need to. 9 to 5 in an office would probably not work for me anymore, as I need to get up and move so that my hip will still work at the end of the day.
14. People would be surprised to know: Exercise can be good for people with asthma. Running or really fast aerobics are the hardest thing for me -- the start of many of the kung fu classes have that. But if I can make it through that part, I'm fine for the rest of the class.
15. The hardest thing to accept about my new reality has been: Constant vigilance, and accepting that not being able to do some things doesn't equal failure. The last I'm definitely still working on, and have accepted work to do that is taking forever for me to get done, which I feel very badly about. I will probably have to give up some more things this year/coming year.
16. Something I never thought I could do with my illness that I did was: kung fu
17. The commercials about my illness: I don't watch commercials
18. Something I really miss doing since I was diagnosed is: pushing myself as hard as I need to, whenever I need to. Also, jumping well.
19. It was really hard to have to give up: doing as much
20. A new hobby I have taken up since my diagnosis is: Since I've listed several things and they're over a span of time.... um... how about spinning?
21. If I could have one day of feeling normal again I would: Revel in being able to run, jump, bend down to pick things up, kneel on the floor to look at things, without pain or shortness of breath.
22. My illness has taught me: slow down and rest.
23. Want to know a secret? One thing people say that gets under my skin is: You shouldn't do X physical activity, you'll hurt yourself. It might be true, but it's my choice. Talk with me, don't tell me what to do with my life.
24. But I love it when people: Find ways to support me in what I want to do. Like when folks support us on the field by providing water and pretzels, or help me carry some of my stuff back to the camp (helmets and shields do get heavy). I'm getting stronger again, but without help it's hard to make that journey. Thank goodness for friends!
25. My favorite motto, scripture, quote that gets me through tough times is: Um.... Take a break?
26. When someone is diagnosed I’d like to tell them: try to figure out what isn't as important to you, so that you don't miss out on the things that are important to you. Life can still be full and interesting, and exercise is still good for you.
27. Something that has surprised me about living with an illness is: Things can be fine for days and then smack you down.
28. The nicest thing someone did for me when I wasn’t feeling well was: L does a lot all the time of course :) But of other folks, one thing I'll always remember was how good it felt when![[livejournal.com profile]](https://www.dreamwidth.org/img/external/lj-userinfo.gif)
harpnfiddle washed my hair for me, after the shoulder surgery. She was up for a visit and offered, having experience with doing this. I have the best friends :)
29. I’m involved with Invisible Illness Week because: there are more of us than you know, and I want to help make us visible.
30. The fact that you read this list makes me feel: Nervous. But I guess that's okay.
1. The illness I live with is: allergies, asthma, various joint and muscle injuries, and possibly some other things that I don't want to get into because I'm still figuring things out, however depression seems to be a side effect of whatever it is.
2. I was diagnosed with it in the year: Generally suffering from allergies in 1979 but no specific testing until 1981 when I returned to the States and had 6 bloody noses in one week.
3. But I had symptoms since: My mom says since grammar school but that was her and the purple lilacs. I started being allergic to pretty much everything that floats in the air in high school. Hong Kong has an inordinate amount of mold and mildew...
I also have a food allergy but didn't start discovering it until the 80s and then finally figured it out a few years ago. I can have some regular cane sugar -- the more processed the better. I can't have a lot of it. I also can't have raw cane sugar products _at all_, unless they're organic. Some of my friends have seen what happens when I have something with too much cane sugar in it -- fortunately one of them saw what was happening (a red flush spreading up my neck) before it affected my lungs so I was able to take some meds before the full effect could hit.
Asthma diagnosis was in 1981. It didn't slow me down significantly for a long time, as I was into ballet, synchronized swimming and scuba diving, which all work to improve your lung capacity and general fitness. Then I got walking pneumonia and bronchitis one summer, and bronchitis a number of summers after that.
Joint and muscle issues -- flat feet and a slight curvature and twist in the lower spine, leading to bad knees, "interesting" hips, oh and I also had corrective surgery to my right shoulder.
4. The biggest adjustment I’ve had to make is: Checking labels, and deciding whether or not to bring my meds with me. Every day is different. Being adaptive to whatever my body is willing to give that day. Everything takes longer to do, I can't do as much as I used to do because the energy is used up faster.
5. Most people assume: that I'm fine and can do most anything I want to do. That might be because I tend to take that attitude myself, but it isn't true, and I'm trying to learn to adapt to that truth and not view it as failure.
6. The hardest part about mornings are: Checking to see how my breathing is, what stretches I might need to do, what things I may need to postpone to another day.
7. My favorite medical TV show is: none
8. A gadget I couldn’t live without is: um..... ? Not a gadget, but I really like having my husband around -- he helps to make a lot more things possible for me.
9. The hardest part about nights are: Sometimes breathing. Sometimes grinding my teeth (L wakes me up if that happens so I can put in my mouth guard) -- although that's been happening less often since we started kung fu. Sometimes my right leg, back, shoulders or neck hurt too much. Sometimes I just wake up a lot.
10. Each day I take _ pills & vitamins: Nothing daily. Multi-vitamin on days I don't think I'm getting enough veggies, allergy and breathing stuff as needed, anti-inflammatories as needed.
11. Regarding alternative treatments I: Have a homeopathic for bronchitis that I take whenever the lungs are starting to be wheezy so I don't always have to use the inhaler with the steroids :P Have some tinctures too for various things, and also either have nettle tea or throw nettles into soups sometimes, as variations on taking nettle for allergies. Self-accupressure is also my friend :)
12. If I had to choose between an invisible illness or visible I would choose: I'd rather not have either, thanks. But more importantly, I'd rather not have people judge what I can and can't do based on an illness, since they're often wrong.
13. Regarding working and career: Well, I'm not an active MT anymore since the shoulder surgery, but am doing some spot work. Getting more into other things now. I have the true luxury of being able to do things at home, where I can take a break whenever I need to. 9 to 5 in an office would probably not work for me anymore, as I need to get up and move so that my hip will still work at the end of the day.
14. People would be surprised to know: Exercise can be good for people with asthma. Running or really fast aerobics are the hardest thing for me -- the start of many of the kung fu classes have that. But if I can make it through that part, I'm fine for the rest of the class.
15. The hardest thing to accept about my new reality has been: Constant vigilance, and accepting that not being able to do some things doesn't equal failure. The last I'm definitely still working on, and have accepted work to do that is taking forever for me to get done, which I feel very badly about. I will probably have to give up some more things this year/coming year.
16. Something I never thought I could do with my illness that I did was: kung fu
17. The commercials about my illness: I don't watch commercials
18. Something I really miss doing since I was diagnosed is: pushing myself as hard as I need to, whenever I need to. Also, jumping well.
19. It was really hard to have to give up: doing as much
20. A new hobby I have taken up since my diagnosis is: Since I've listed several things and they're over a span of time.... um... how about spinning?
21. If I could have one day of feeling normal again I would: Revel in being able to run, jump, bend down to pick things up, kneel on the floor to look at things, without pain or shortness of breath.
22. My illness has taught me: slow down and rest.
23. Want to know a secret? One thing people say that gets under my skin is: You shouldn't do X physical activity, you'll hurt yourself. It might be true, but it's my choice. Talk with me, don't tell me what to do with my life.
24. But I love it when people: Find ways to support me in what I want to do. Like when folks support us on the field by providing water and pretzels, or help me carry some of my stuff back to the camp (helmets and shields do get heavy). I'm getting stronger again, but without help it's hard to make that journey. Thank goodness for friends!
25. My favorite motto, scripture, quote that gets me through tough times is: Um.... Take a break?
26. When someone is diagnosed I’d like to tell them: try to figure out what isn't as important to you, so that you don't miss out on the things that are important to you. Life can still be full and interesting, and exercise is still good for you.
27. Something that has surprised me about living with an illness is: Things can be fine for days and then smack you down.
28. The nicest thing someone did for me when I wasn’t feeling well was: L does a lot all the time of course :) But of other folks, one thing I'll always remember was how good it felt when
harpnfiddle washed my hair for me, after the shoulder surgery. She was up for a visit and offered, having experience with doing this. I have the best friends :)29. I’m involved with Invisible Illness Week because: there are more of us than you know, and I want to help make us visible.
30. The fact that you read this list makes me feel: Nervous. But I guess that's okay.
