Invisible illnesses
Ehm. The obvious invisible illness is diabetes. I suffer from occasional migraines too. And chronic headache. In addition, there is something wrong with my iron metabolism.
1. The illness I live with is: diabetes
2. I was diagnosed with it in the year: 1996
3. But I had symptoms since: 1995, maybe 1994
4. The biggest adjustment I’ve had to make is: I lost the ability to impulsively change my plans. E.g. I can't decide on the spur of the moment to go to Paris (visiting Paris requires bringing a sufficient amount of medication+doctor's statement). E.g. I can't decide not to eat my dinner at all after tasting it and not liking it (because this happens after I have taken my insulin and I will have to balance the insulin with sufficient carbohydrates).
5. Most people assume: that I am not allowed to eat sugar (and I won't explain why this assumption is wrong)
6. The hardest part about mornings are: this disease is chronic. You never have a holiday from being ill.
7. My favorite medical TV show is: ER
8. A gadget I couldn’t live without is: my blood glucose meter
9. The hardest part about nights are: See 6. This disease is chronic. You never have a holiday from being ill.
10. Every day I take: two types of insulin (6 injections or more)
11. Regarding alternative treatments: Not an option (in my opinion)
12. If I had to choose between an invisible illness or visible I would choose: I don't know.
13. Regarding working and career: Management usually expects a problem, but after I tell them it is not a problem, they usually believe me.
14. People would be surprised to know: how much effort it takes to maintain quantities of medication and related items: two types of insulin, syringes, lancets, test strips, dextrose, glucagon, batteries (for blood glucose meter) (and four types of pills not related to diabetes).
15. The hardest thing to accept about my new reality has been: If I make a mistake with the insulin dosage, I could end up dead.
16. Something I never thought I could do with my illness that I did was: There was nothing I thought I could never do.
17. The commercials about my illness: are irritating as commercials usually are
18. Something I really miss doing since I was diagnosed is: See 4 for details. Acting impulsively.
19. It was really hard to have to give up: I gave up drinking beer and that was not hard, because I was more of a wine drinker anyway.
20. A new hobby I have taken up since my diagnosis is: aikido and club dance
21. If I could have one day of feeling normal again I would: drink 5 or more glasses of alcohol without worrying about dying from hypoglycemia.
22. My illness has taught me: a better sense of timing
23. Want to know a secret? Diabetes is not one disease, it is a group of diseases which all result in a relative lack of insulin. Two individuals with the exact same type of diabetes will respond differently/individually, so treatment is a (personal) matter of trial and error.
24. But I love it when people: don't fuss about me having diabetes and don't interfere with my timing
25. My favorite motto, scripture, quote that gets me through tough times is: "one down is good bridge." Treating diabetes involves balancing units of insulin with amounts of carbohydrates. Usually the balancing act works out okay. Sometimes I find myself with one unit of insulin short (or too much) and I tell myself that I even now I have done a good enough job.
26. When someone is diagnosed I’d like to tell them: you can grow old with this disease (and do stuff)
27. Something that has surprised me about living with an illness is: I was not surprised
28. The nicest thing someone did for me when I wasn’t feeling well was: People don't do nice things for me; they expect me to cope. And I do.
29. I’m involved with Invisible Illness Week because: I am not involved
30. The fact that you read this list makes me feel: useful
1. The illness I live with is: diabetes
2. I was diagnosed with it in the year: 1996
3. But I had symptoms since: 1995, maybe 1994
4. The biggest adjustment I’ve had to make is: I lost the ability to impulsively change my plans. E.g. I can't decide on the spur of the moment to go to Paris (visiting Paris requires bringing a sufficient amount of medication+doctor's statement). E.g. I can't decide not to eat my dinner at all after tasting it and not liking it (because this happens after I have taken my insulin and I will have to balance the insulin with sufficient carbohydrates).
5. Most people assume: that I am not allowed to eat sugar (and I won't explain why this assumption is wrong)
6. The hardest part about mornings are: this disease is chronic. You never have a holiday from being ill.
7. My favorite medical TV show is: ER
8. A gadget I couldn’t live without is: my blood glucose meter
9. The hardest part about nights are: See 6. This disease is chronic. You never have a holiday from being ill.
10. Every day I take: two types of insulin (6 injections or more)
11. Regarding alternative treatments: Not an option (in my opinion)
12. If I had to choose between an invisible illness or visible I would choose: I don't know.
13. Regarding working and career: Management usually expects a problem, but after I tell them it is not a problem, they usually believe me.
14. People would be surprised to know: how much effort it takes to maintain quantities of medication and related items: two types of insulin, syringes, lancets, test strips, dextrose, glucagon, batteries (for blood glucose meter) (and four types of pills not related to diabetes).
15. The hardest thing to accept about my new reality has been: If I make a mistake with the insulin dosage, I could end up dead.
16. Something I never thought I could do with my illness that I did was: There was nothing I thought I could never do.
17. The commercials about my illness: are irritating as commercials usually are
18. Something I really miss doing since I was diagnosed is: See 4 for details. Acting impulsively.
19. It was really hard to have to give up: I gave up drinking beer and that was not hard, because I was more of a wine drinker anyway.
20. A new hobby I have taken up since my diagnosis is: aikido and club dance
21. If I could have one day of feeling normal again I would: drink 5 or more glasses of alcohol without worrying about dying from hypoglycemia.
22. My illness has taught me: a better sense of timing
23. Want to know a secret? Diabetes is not one disease, it is a group of diseases which all result in a relative lack of insulin. Two individuals with the exact same type of diabetes will respond differently/individually, so treatment is a (personal) matter of trial and error.
24. But I love it when people: don't fuss about me having diabetes and don't interfere with my timing
25. My favorite motto, scripture, quote that gets me through tough times is: "one down is good bridge." Treating diabetes involves balancing units of insulin with amounts of carbohydrates. Usually the balancing act works out okay. Sometimes I find myself with one unit of insulin short (or too much) and I tell myself that I even now I have done a good enough job.
26. When someone is diagnosed I’d like to tell them: you can grow old with this disease (and do stuff)
27. Something that has surprised me about living with an illness is: I was not surprised
28. The nicest thing someone did for me when I wasn’t feeling well was: People don't do nice things for me; they expect me to cope. And I do.
29. I’m involved with Invisible Illness Week because: I am not involved
30. The fact that you read this list makes me feel: useful