Monday, September 20, 2010

30 things you might not know about my invisible illness

OK, so I'm leaving this a bit more than late - Invisible Illness Awareness Week is now officially over. But hey, just cos I missed it doesn't mean should miss out, eh? :)

1. The illness I live with is: Type 1 Diabetes

2. I was diagnosed with it in the year: 1988

3. But I had symptoms since: I was 5 at the time, so I don't remember the exact timing of stuff that far back. I do remember walking in town with my family, and repeatedly asking for a drink, and being given a can of (normal) lemonade! I also remember getting really skinny and earning the nickname 'stickthin' at school. I also remember that shortly after I was diagnosed, it was my 6th birthday, and my Mum had no idea what to make as a cake. Being the inventive soul that she is, she made a "plain" cake and "iced" it with cream cheese decorated with kiwi fruit! Let's just say my 6 yr old friends didn't know what to think of that! :P

4. The biggest adjustment I’ve had to make is: None. I've had this so long that it has become a part of me. I barely remember what it was like to not be diabetic. This IS my normal. Of course, whenever the drug companies make a new insulin, that's always a major adjustment to get used to.

5. Most people assume:
 That T1 is just a "worse" form of T2. It's not. They are 2 completely separate diseases and I am beginning to see the logic in two very distinct and separate names! Some people also assume that
- I can't eat ANY sugar
- I can't eat salt (WTF?)
- I can't eat chocolate (gimme gimme!)
- I just have an injection and that fixes everything
- that it's similar to mild asthma - when I explain the daily rituals and routines I go through, most people are quite amazed I get any work done at all!

6. The hardest part about mornings are: 
waking up either really high or really low, as either result is guaranteed to wreak havoc on my day.

7. My favorite medical TV show is: House. It's funny.
8. A gadget I couldn’t live without is: Well, the obvious answer is my glucose meter (Optium Xceed), but I could just get another one. Maybe my iPhone. I love my iPhone! I use it to calculate insulin dosages and control has gotten better since I started doing that :)

9. The hardest part about nights are: those common occasions when I go low and have to get out of a snuggly bed to fetch juice or biscuits. Or, those very rare occasions when I wake up in accident and emergency with the worried faces of my husband and parents looking down at me :(

10. Each day I take __ pills & vitamins. (No comments, please) No pills, just Lantus and Humalog insulins. Between 5 - 10 injections per day. Oh, I was taking a pre-pregnancy supplement and iron pills, but since I have to wait...let me count, 25 months to wait before we can even go on the waiting list, and another 18 months after that before we may actually be able to start IVF treatment, I kinda stopped taking them :( Believe me, I will do anything I can to start taking those pills again!

11. Regarding alternative treatments I: Sometimes I take garlic capsules, and I like a good lemon-honey drink for a sore throat. I also love a good backrub.

12. If I had to choose between ainvisible illness or visible I would choose: I dunno, invisible I suppose because that's what I'm used to. I get annoyed when people don't understand, but then I realise that if I tell them, then THEY KNOW. And that can have both positive and negative side effects :P

13. Regarding working and career: I think it's completely unfair for folks with a chronic illness to just have the same number of paid sick days as "normal" people. When I get the flu, that's a sick day off work. But what about when I've had a really bad low at night? I look fine, but my brain may be completely fried! Not fair I tell you!

14. People would be surprised to know: Just how much diabetes can take over a person's life. I think I would be a completely different person if I hadn't been diabetic. I think I would have been much more out-going and perhaps less focused.

15. The hardest thing to accept about my new reality has been:
 I didn't get a choice. It was just something that happened: Get on with life.

16. Something I never thought I could do with my illness that I did was:
 write this blog! :D
17. The commercials about my illness: Are terrible. Not only because they make sweeping generalisations and play-up to stereotypes, but also because they often get things wrong. I also hate the way patients are seen as dollar signs. Makes me grumpy just thinking about how some people profit from other people's illness!
18. Something I really miss doing since I was diagnosed is: Eating milo sandwiches, with lashings of butter and brown sugar, on white bread with the crusts cut off. This was my Aunt's speciality. Haven't eaten it in about 22 years.
19. It was really hard to have to give up: Can't remember back that far, didn't really have any food habits to give up.
20. A new hobby I have taken up since my diagnosis is: So many to choose from! Kung fu, silver smithing, painting, photography, gardening...
21. If I could have one day of feeling normal again I would: Figure out how to make it the next day too!
22. My illness has taught me: to stand up for myself and question everything a health professional tells me.
23. Want to know a secret? One thing people say that gets under my skin is: how many sugars do you want in your tea? Just, goddam it, give me the sugar bowl and let me decide!
24. But I love it when people: like me for who I am, not what I am.
25. My favorite motto, scripture, quote that gets me through tough times is: Do not be afraid of perfection, you will never reach it.  -- Salvador Dali, surrealist painter.
26. When someone is diagnosed I’d like to tell them: I will be here to help you if you need it.
27. Something that has surprised me about living with an illness is: The fact that I perhaps get better medical care than a "normal" person because diabetics get shunted to the top of the list.
28. The nicest thing someone did for me when I wasn’t feeling well was: Look after me.
29. I’m involved with Invisible Illness Week because: I just read about it, and think it's an excellent idea :)
30. The fact that you read this list makes me feel: happy that you want to stalk me and find out everything about me haha! :P

1 comment:

  1. Waking up in A&E - scary stuff. Luckily I have not had that happen...

    Milo on bread? Not something I would have ever considered!

    How great of your mom to come up with a cake like that!