Invisible Illness Awareness
1. The illness(es) I live with are/is: Fibromyalgia and Rheumatoid Arthritis.
2. I was diagnosed: FMS : 2003, RA: 2007.
3. But I’ve had symptoms since: In retrospect the first symptoms started in 1992...
4. The biggest adjustment I’ve had to make is: having to change my whole life around my illness(es), not being able to do the things I love anymore. It took a while to accept these things, but I take things easy these days because there´s nothing else I can do about it anyway. Moving to a warm tropical island helps a lot!
5. Most people assume: because I look punky/goth and can put on make-up and dress well, I can´t possibly be in pain 24/7, even though simply getting into my car can be a chore on bad days, but hey, I still DO it. That´s life.
6. The hardest part about mornings is: pain and stiffness in my hands in particular, bad coordination (I drop things, walk into door frames, trip on the carpet etc.), and it taking up to 2 hours for me to "come to" properly. But my worst nightmare is, if I have to get up an hour earlier than usual or don´t get enough hours of sleep, the above symptoms are even worse.
7. My favorite medical TV show is: they´re all crap, but I used to like "Scrubs" for the comedy value.
8. A gadget I couldn’t live without is: too many!!! I need ALL my gadgets!
9. The hardest part about nights are: worrying about how many times I´m gonna wake up tonight... however, since taking Lyrica, I have slept like a baby without interruptions pretty much every night. Also, not being able to go out clubbing because my "shuts down" at a certain time.
10. Each day I take: Lyrica for fibro, Sulfasalazine for RA (but changing to biologics soon), some expensive Chinese herbal medicine that I´m trying at the moment (maybe I won´t need the biologics if this helps!), ginkgo biloba, omega 3 fish oil & various other supplements.
11. Regarding alternative treatments I: See number 10 above. The Chinese herbal treatment and practitioner cost 100€ a month (trying for a few months), but beggars can´t be choosers.
12. If I had to choose between an invisible illness or visible I would choose: I would choose NEITHER! Knowing what it´s like to live with an invisible illness every day, I think I´d rather choose not to live at all rather than choose from either two.
13. Regarding working and career: At the moment I am working 2 part time jobs. However, one of the part-time jobs is working from home, so it´s not a "real" job and I can still rest whenever I have to. I couldn´t work a full-time job, last time I tried and failed.
14. People would be surprised to know: That´s I´m in pain 24/7.
15. The hardest thing to accept about my reality has been: That´s I´m stuck with this crap for LIFE. I know I shouldn´t give up hope, but what makes me angry is that they seem to be putting more money and importance into cancer research than into illnesses like fibro or rheumatoid arthritis. At least people with cancer will be released from their life of pain shortly, whereas people with fibro or RA have their whole, long painful lives to look forward to.
16. Something I never thought I could do with my illness that I did was: Hmm... hasn´t happened yet....
17. The commercials about my illness: Commercials? I didn´t know there were any. At least not in my country (Spain).
18. Something I really miss doing is: Go-Karting, laser-questing, nightclubbing, socialising in general. Dancing, swimming... oh jeez, the list goes on!
19. It was really hard to have to give up: see 18 above.
20. A new hobby I have taken up is: photography. With the super-lightweight digital cameras of today, it´s not so difficult to hold the camera for long times, and I even get myself into all sorts of upside down and strange positions taking photos (whenever I feel well enough to do so, that is).
21. If I could have one day of feeling normal again I would: Clone it! So I can have it the next day and the next and the next!
22. My illness has taught me: it´s bad, but there´s always someone worse than you out there...
23. Want to know a secret? ok, here it goes. Sometimes I wish I rather had terminal cancer and knowing I will be released soon, than having to live another 30-40 years in pain.
24. But I love it when people: accept me for who I am *with* all my limitations.
25. My favorite motto, scripture, quote that gets me through tough times is: life´s a bitch, and so am I!
26. When someone is diagnosed I’d like to tell them: it´s tough, but you´re not alone. Find support on the internet or locally. Or even just call me and I´m happy to help/chat/support, whatever.
27. Something that has surprised me about living with an illness is: How few people even know that stuff like this exists. Or even if they have heard of it, how few people actually know anything at all about it.
28. The nicest thing someone did for me when I wasn’t feeling well was: hasn´t happened yet.
29. I’m involved with Invisible Illness Week because: Until my friend Sakara posted this meme on her LJ I didnt know it was Awareness Week, so anything that can get awareness of it across, I would like to help with.
30. The fact that you read this list makes me feel: hopeful that you might understand people with invisible illnesses better next time you meet one.
2. I was diagnosed: FMS : 2003, RA: 2007.
3. But I’ve had symptoms since: In retrospect the first symptoms started in 1992...
4. The biggest adjustment I’ve had to make is: having to change my whole life around my illness(es), not being able to do the things I love anymore. It took a while to accept these things, but I take things easy these days because there´s nothing else I can do about it anyway. Moving to a warm tropical island helps a lot!
5. Most people assume: because I look punky/goth and can put on make-up and dress well, I can´t possibly be in pain 24/7, even though simply getting into my car can be a chore on bad days, but hey, I still DO it. That´s life.
6. The hardest part about mornings is: pain and stiffness in my hands in particular, bad coordination (I drop things, walk into door frames, trip on the carpet etc.), and it taking up to 2 hours for me to "come to" properly. But my worst nightmare is, if I have to get up an hour earlier than usual or don´t get enough hours of sleep, the above symptoms are even worse.
7. My favorite medical TV show is: they´re all crap, but I used to like "Scrubs" for the comedy value.
8. A gadget I couldn’t live without is: too many!!! I need ALL my gadgets!
9. The hardest part about nights are: worrying about how many times I´m gonna wake up tonight... however, since taking Lyrica, I have slept like a baby without interruptions pretty much every night. Also, not being able to go out clubbing because my "shuts down" at a certain time.
10. Each day I take: Lyrica for fibro, Sulfasalazine for RA (but changing to biologics soon), some expensive Chinese herbal medicine that I´m trying at the moment (maybe I won´t need the biologics if this helps!), ginkgo biloba, omega 3 fish oil & various other supplements.
11. Regarding alternative treatments I: See number 10 above. The Chinese herbal treatment and practitioner cost 100€ a month (trying for a few months), but beggars can´t be choosers.
12. If I had to choose between an invisible illness or visible I would choose: I would choose NEITHER! Knowing what it´s like to live with an invisible illness every day, I think I´d rather choose not to live at all rather than choose from either two.
13. Regarding working and career: At the moment I am working 2 part time jobs. However, one of the part-time jobs is working from home, so it´s not a "real" job and I can still rest whenever I have to. I couldn´t work a full-time job, last time I tried and failed.
14. People would be surprised to know: That´s I´m in pain 24/7.
15. The hardest thing to accept about my reality has been: That´s I´m stuck with this crap for LIFE. I know I shouldn´t give up hope, but what makes me angry is that they seem to be putting more money and importance into cancer research than into illnesses like fibro or rheumatoid arthritis. At least people with cancer will be released from their life of pain shortly, whereas people with fibro or RA have their whole, long painful lives to look forward to.
16. Something I never thought I could do with my illness that I did was: Hmm... hasn´t happened yet....
17. The commercials about my illness: Commercials? I didn´t know there were any. At least not in my country (Spain).
18. Something I really miss doing is: Go-Karting, laser-questing, nightclubbing, socialising in general. Dancing, swimming... oh jeez, the list goes on!
19. It was really hard to have to give up: see 18 above.
20. A new hobby I have taken up is: photography. With the super-lightweight digital cameras of today, it´s not so difficult to hold the camera for long times, and I even get myself into all sorts of upside down and strange positions taking photos (whenever I feel well enough to do so, that is).
21. If I could have one day of feeling normal again I would: Clone it! So I can have it the next day and the next and the next!
22. My illness has taught me: it´s bad, but there´s always someone worse than you out there...
23. Want to know a secret? ok, here it goes. Sometimes I wish I rather had terminal cancer and knowing I will be released soon, than having to live another 30-40 years in pain.
24. But I love it when people: accept me for who I am *with* all my limitations.
25. My favorite motto, scripture, quote that gets me through tough times is: life´s a bitch, and so am I!
26. When someone is diagnosed I’d like to tell them: it´s tough, but you´re not alone. Find support on the internet or locally. Or even just call me and I´m happy to help/chat/support, whatever.
27. Something that has surprised me about living with an illness is: How few people even know that stuff like this exists. Or even if they have heard of it, how few people actually know anything at all about it.
28. The nicest thing someone did for me when I wasn’t feeling well was: hasn´t happened yet.
29. I’m involved with Invisible Illness Week because: Until my friend Sakara posted this meme on her LJ I didnt know it was Awareness Week, so anything that can get awareness of it across, I would like to help with.
30. The fact that you read this list makes me feel: hopeful that you might understand people with invisible illnesses better next time you meet one.