Stolen from the lovely Etana: A rare unlocked post.
30 Things About My Invisible Illness You May Not Know
1. The illness I live with is: undiagnosed. It may be MS, Lupus, CFS, Chronic Pain with Nerve Presentations, or one of a million other guesses doctors have made in the last three years.
2. I was diagnosed with it in the year: n/a
3. But I had symptoms since: 2006
4. The biggest adjustment I’ve had to make is: picking activities based on energy stores and pain levels, not by how much I want to participate or feel obligated to join. Also, not being able to drive myself places.
5. Most people assume: That if I lost weight things would just clear up magically. Tell that to my misfiring nerves.
6. The hardest part about mornings are: Many days if I get up before 10 or so I'm completely worthless all day.
7. My favorite medical TV show is: House. See Icon.
8. A gadget I couldn’t live without is: my little pill holder attached to my wallet.
9. The hardest part about nights are: wanting to spend time with Ninja or other people, but not having the spoons to do it.
10. Each day I take __ pills & vitamins: 4-6, three times a day, plus a pain patch I wear all the time.
11. Regarding alternative treatments I: have serious access issues.
12. If I had to choose between an invisible illness or visible I would choose: Neither, but that's the easy answer. Sometimes I wish I just had a name to tell people, so they could say "oh" and we could be over it already.
13. Regarding working and career: I have cut back on a lot of what I do, and do a lot more over the internet than I used to. I'm also turning down gigs I'd love to take because I know I won't be able to do them.
14. People would be surprised to know: I have aphasia now, but I cover it up well.
15. The hardest thing to accept about my new reality has been: not being taken seriously about the amount of pain I'm in all the time.
16. Something I never thought I could do with my illness that I did was: take hikes in the woods.
17. The commercials about my illness: don't exist, or insinuate that I might just need the right anti-depressant.
18. Something I really miss doing since I was diagnosed is: driving myself places. I still do it, rarely, but I'm really not supposed to because of the symptoms and drugs.
19. It was really hard to have to give up: a vigorous, enthusiastic sex life. Sometimes I can pretend for a while, but I always end up having to pay for it in other ways.
20. A new hobby I have taken up since my diagnosis is: learning about rare neurological diseases.
21. If I could have one day of feeling normal again I would: go camping.
22. My illness has taught me: how much time humans spend trying to forget that we're all going to die, and we don't get to choose when (most of the time), and it's a bad idea to want to choose when you die.
23. Want to know a secret? One thing people say that gets under my skin is: "Do you think it might be..?" Or "Have you tried..."
24. But I love it when people: treat me like a normal person even when I can't get out of bed.
25. My favorite motto, scripture, quote that gets me through tough times is: "It will be okay in the end. If it's not okay, it's not the end."
26. When someone is diagnosed I’d like to tell them: I think knowing and being able to treat what's happening is infinitely better than not knowing.
27. Something that has surprised me about living with an illness is: how disability unfriendly people can be, without even knowing it. How much places assume they're handicap accessible if they're wheelchair accessible, even though it's not the same thing.
28. The nicest thing someone did for me when I wasn’t feeling well was: understand that I wanted to be there for them in person, but all I could offer was internet/phone.
29. I’m involved with Invisible Illness Week because: I am not so easily defined by a commercial for a new pill, or a medical website; I am not so easily healed by fresh air, exercise, and lots of internet hugs.
30. The fact that you read this list makes me feel: Like maybe you understand my situation a little better.
Taken from National Invisible Chronic Illness Week.
1. The illness I live with is: undiagnosed. It may be MS, Lupus, CFS, Chronic Pain with Nerve Presentations, or one of a million other guesses doctors have made in the last three years.
2. I was diagnosed with it in the year: n/a
3. But I had symptoms since: 2006
4. The biggest adjustment I’ve had to make is: picking activities based on energy stores and pain levels, not by how much I want to participate or feel obligated to join. Also, not being able to drive myself places.
5. Most people assume: That if I lost weight things would just clear up magically. Tell that to my misfiring nerves.
6. The hardest part about mornings are: Many days if I get up before 10 or so I'm completely worthless all day.
7. My favorite medical TV show is: House. See Icon.
8. A gadget I couldn’t live without is: my little pill holder attached to my wallet.
9. The hardest part about nights are: wanting to spend time with Ninja or other people, but not having the spoons to do it.
10. Each day I take __ pills & vitamins: 4-6, three times a day, plus a pain patch I wear all the time.
11. Regarding alternative treatments I: have serious access issues.
12. If I had to choose between an invisible illness or visible I would choose: Neither, but that's the easy answer. Sometimes I wish I just had a name to tell people, so they could say "oh" and we could be over it already.
13. Regarding working and career: I have cut back on a lot of what I do, and do a lot more over the internet than I used to. I'm also turning down gigs I'd love to take because I know I won't be able to do them.
14. People would be surprised to know: I have aphasia now, but I cover it up well.
15. The hardest thing to accept about my new reality has been: not being taken seriously about the amount of pain I'm in all the time.
16. Something I never thought I could do with my illness that I did was: take hikes in the woods.
17. The commercials about my illness: don't exist, or insinuate that I might just need the right anti-depressant.
18. Something I really miss doing since I was diagnosed is: driving myself places. I still do it, rarely, but I'm really not supposed to because of the symptoms and drugs.
19. It was really hard to have to give up: a vigorous, enthusiastic sex life. Sometimes I can pretend for a while, but I always end up having to pay for it in other ways.
20. A new hobby I have taken up since my diagnosis is: learning about rare neurological diseases.
21. If I could have one day of feeling normal again I would: go camping.
22. My illness has taught me: how much time humans spend trying to forget that we're all going to die, and we don't get to choose when (most of the time), and it's a bad idea to want to choose when you die.
23. Want to know a secret? One thing people say that gets under my skin is: "Do you think it might be..?" Or "Have you tried..."
24. But I love it when people: treat me like a normal person even when I can't get out of bed.
25. My favorite motto, scripture, quote that gets me through tough times is: "It will be okay in the end. If it's not okay, it's not the end."
26. When someone is diagnosed I’d like to tell them: I think knowing and being able to treat what's happening is infinitely better than not knowing.
27. Something that has surprised me about living with an illness is: how disability unfriendly people can be, without even knowing it. How much places assume they're handicap accessible if they're wheelchair accessible, even though it's not the same thing.
28. The nicest thing someone did for me when I wasn’t feeling well was: understand that I wanted to be there for them in person, but all I could offer was internet/phone.
29. I’m involved with Invisible Illness Week because: I am not so easily defined by a commercial for a new pill, or a medical website; I am not so easily healed by fresh air, exercise, and lots of internet hugs.
30. The fact that you read this list makes me feel: Like maybe you understand my situation a little better.
Taken from National Invisible Chronic Illness Week.