Invisible Illness meme
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firecat
30 things about my "Invisible Illness"
1. The illness I live with is:
The invisible illness I live with is post-polio syndrome (aka "late effects of polio"). This is on top of some very visible disabilities which may likely have been related to having had polio: a severely curved spine and a broken ankle that never healed right and is now bone-on-bone instead of having cartilege there. And I am quite overweight by American standards, which is often perceived as an illness although it is not.
2. I was diagnosed with it in the year:
2003, I think.
3. But I had symptoms since:
I had the polio when I was 2 months old, in 1952. The post-polio symptoms probably started around 1998 or so. I hadn't even heard of PPS until about 2001.
4. The biggest adjustment I’ve had to make is:
Reducing how much I do, and it's a constant challenge.
5. Most people assume:
I'm just lazy, I guess. Worse, that I have no brain because my body doesn't work right.
6. The hardest part about mornings are:
Standing up and walking. The transitions (from lying to standing, standing to sitting, sitting to standing, standing to lying) are sometimes more painful than moving around is.
7. My favorite medical TV show is:
ER at the moment, season 2; but I have no idea what this has to do with my health status.
8. A gadget I couldn’t live without is:
A tall toilet. I have one of those plastic risers on one of our toilets. It is VERY hard to get up from a regular low toilet.
9. The hardest part about nights are:
Getting the pain to stop enough so I can sleep. Even with all the meds.
10. Each day I take __ pills & vitamins. (No comments, please)
I agree with this editorial by firecat: "The parenthetical implies there's something shameful about taking a lot of pills and vitamins, such that one has to defend against possible shaming in advance. I hate the societal attitude that taking a pill means you're a failure and taking a lot of pills means you're a basket case.
I do understand people not wanting to feel dependent on pills, because there are a lot of hoops to jump through to get prescription medicines and it's scary to feel dependent on the good will of the medical establishment, and the health of one's bank account, to provide prescriptions one might need. I dislike it when people's personal dislike of pills turns into judgement about other people needing pills.
I also understand that there are pills to treat things that some people wouldn't consider a health condition (e.g., there's now a pill for people who want longer eyelashes) and that pills are sometimes overprescribed and that these are problems in my society. I dislike it when people's concern over overprescription and overmedicalization turns into judgement about other people needing pills."
That said, I take a shitload. 15 at breakfast, 6 at dinner, and 8-10 at bedtime (depends on whether I'm using naproxen..1 pill...or ibuprofen...3 pills....for the NSAID portion). Many of the pills are supplements. The rest are prescriptions and OTC.
11. Regarding alternative treatments I:
can't afford most of it.
12. If I had to choose between an invisible illness or visible I would choose:
mu? this question as posed makes no sense to me. I wouldn't CHOOSE to have any illness.
13. Regarding working and career:
I am now at a point where I believe I cannot work a regular, full-time, on-site job. That sucks in more ways than I can express.
14. People would be surprised to know:
No clue.
15. The hardest thing to accept about my new reality has been:
Not being able to do the things I love, including garden, bicycle, hike in the woods, clean the house, do yard work...
16. Something I never thought I could do with my illness that I did was:
No, it usually goes the other way. No, wait. Now that I have the scooter, I find I can do more than I expected sometimes.Going to the State Fair comes to mind.
17. The commercials about my illness:
I have no broadcast TV in my house. I have no clue what the commercials are.
18. Something I really miss doing since I was diagnosed is:
It's not since I was diagnosed because it started before. See #15.
19. It was really hard to have to give up:
Feeling free to go on outings without worrying about my mobility and pain levels.
20. A new hobby I have taken up since my diagnosis is:
Watching old TV series from Netflix.
21. If I could have one day of feeling normal again I would:
Say "no" because just one day would simply make me feel awful.
22. My illness has taught me:
To slow down. To not expect as much, form myself or others. To wait. To be really creative in finding ways to do things and tools that help. To ask for help (that was a hard one).
23. Want to know a secret? One thing people say that gets under my skin is:
Let's not go there, OK?
24. But I love it when people:
Are willing to accommodate my needs and still enjoy spending time with me.
25. My favorite motto, scripture, quote that gets me through tough times is:
"This, too, shall pass"
26. When someone is diagnosed I’d like to tell them:
Slow down! Get a scooter, a wheelchair, a walker, braces, whatever you need to help you conserve your muscles and nerves.
27. Something that has surprised me about living with an illness is:
Not much surprises me, but perhaps how much letting go is needed.
28. The nicest thing someone did for me when I wasn’t feeling well was:
Come over and clean my house for me.
29. I’m involved with Invisible Illness Week because:
I know too many people with CFIDS, MS, MG, fibromyalgia and a number of other invisible illnesses.
30. The fact that you read this list makes me feel:
Listened to.
firecat30 things about my "Invisible Illness"
1. The illness I live with is:
The invisible illness I live with is post-polio syndrome (aka "late effects of polio"). This is on top of some very visible disabilities which may likely have been related to having had polio: a severely curved spine and a broken ankle that never healed right and is now bone-on-bone instead of having cartilege there. And I am quite overweight by American standards, which is often perceived as an illness although it is not.
2. I was diagnosed with it in the year:
2003, I think.
3. But I had symptoms since:
I had the polio when I was 2 months old, in 1952. The post-polio symptoms probably started around 1998 or so. I hadn't even heard of PPS until about 2001.
4. The biggest adjustment I’ve had to make is:
Reducing how much I do, and it's a constant challenge.
5. Most people assume:
I'm just lazy, I guess. Worse, that I have no brain because my body doesn't work right.
6. The hardest part about mornings are:
Standing up and walking. The transitions (from lying to standing, standing to sitting, sitting to standing, standing to lying) are sometimes more painful than moving around is.
7. My favorite medical TV show is:
ER at the moment, season 2; but I have no idea what this has to do with my health status.
8. A gadget I couldn’t live without is:
A tall toilet. I have one of those plastic risers on one of our toilets. It is VERY hard to get up from a regular low toilet.
9. The hardest part about nights are:
Getting the pain to stop enough so I can sleep. Even with all the meds.
10. Each day I take __ pills & vitamins. (No comments, please)
I agree with this editorial by firecat: "The parenthetical implies there's something shameful about taking a lot of pills and vitamins, such that one has to defend against possible shaming in advance. I hate the societal attitude that taking a pill means you're a failure and taking a lot of pills means you're a basket case.
I do understand people not wanting to feel dependent on pills, because there are a lot of hoops to jump through to get prescription medicines and it's scary to feel dependent on the good will of the medical establishment, and the health of one's bank account, to provide prescriptions one might need. I dislike it when people's personal dislike of pills turns into judgement about other people needing pills.
I also understand that there are pills to treat things that some people wouldn't consider a health condition (e.g., there's now a pill for people who want longer eyelashes) and that pills are sometimes overprescribed and that these are problems in my society. I dislike it when people's concern over overprescription and overmedicalization turns into judgement about other people needing pills."
That said, I take a shitload. 15 at breakfast, 6 at dinner, and 8-10 at bedtime (depends on whether I'm using naproxen..1 pill...or ibuprofen...3 pills....for the NSAID portion). Many of the pills are supplements. The rest are prescriptions and OTC.
11. Regarding alternative treatments I:
can't afford most of it.
12. If I had to choose between an invisible illness or visible I would choose:
mu? this question as posed makes no sense to me. I wouldn't CHOOSE to have any illness.
13. Regarding working and career:
I am now at a point where I believe I cannot work a regular, full-time, on-site job. That sucks in more ways than I can express.
14. People would be surprised to know:
No clue.
15. The hardest thing to accept about my new reality has been:
Not being able to do the things I love, including garden, bicycle, hike in the woods, clean the house, do yard work...
16. Something I never thought I could do with my illness that I did was:
No, it usually goes the other way. No, wait. Now that I have the scooter, I find I can do more than I expected sometimes.Going to the State Fair comes to mind.
17. The commercials about my illness:
I have no broadcast TV in my house. I have no clue what the commercials are.
18. Something I really miss doing since I was diagnosed is:
It's not since I was diagnosed because it started before. See #15.
19. It was really hard to have to give up:
Feeling free to go on outings without worrying about my mobility and pain levels.
20. A new hobby I have taken up since my diagnosis is:
Watching old TV series from Netflix.
21. If I could have one day of feeling normal again I would:
Say "no" because just one day would simply make me feel awful.
22. My illness has taught me:
To slow down. To not expect as much, form myself or others. To wait. To be really creative in finding ways to do things and tools that help. To ask for help (that was a hard one).
23. Want to know a secret? One thing people say that gets under my skin is:
Let's not go there, OK?
24. But I love it when people:
Are willing to accommodate my needs and still enjoy spending time with me.
25. My favorite motto, scripture, quote that gets me through tough times is:
"This, too, shall pass"
26. When someone is diagnosed I’d like to tell them:
Slow down! Get a scooter, a wheelchair, a walker, braces, whatever you need to help you conserve your muscles and nerves.
27. Something that has surprised me about living with an illness is:
Not much surprises me, but perhaps how much letting go is needed.
28. The nicest thing someone did for me when I wasn’t feeling well was:
Come over and clean my house for me.
29. I’m involved with Invisible Illness Week because:
I know too many people with CFIDS, MS, MG, fibromyalgia and a number of other invisible illnesses.
30. The fact that you read this list makes me feel:
Listened to.
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