30 Things About My Invisible Illness
October 6, 2011
I’m headed out of town for a couple of days back to Kansas (boyhood home) to attend the Svensk Hyllningsfest in Lindsborg, get back to my Swedish roots, and see some of my family. So to get my blog entry off in time, I decided to do a delinquent answering of the “30 Questions” that came out in conjunction with National Invisible Chronic Illness Week (NICIW) a couple of weeks ago. I read Kerri’s 30 things over at SixUntilMe, which she answered during NICIW. I thought I’d do it then, too. I didn’t. I am now.
1. The illness I live with is:
Type 1 diabetes.
2. I was diagnosed with it in the year:
3. But I had symptoms since:
2007. Perhaps late in 2006, but in January and February of 2007 the symptoms really hit. It wasn’t something that lingered for a long time, thanks to my wife’s awareness that it seemed to be more than just a cold or the flu.
4. The biggest adjustment I’ve had to make is:
Living — and sleeping — with an insulin pump. It was a nice adjustment to move to the pump after having to give myself shots for a couple of months. It’s not a complaint, I guess; it’s just an adjustment.
5. Most people assume:
My diet is restricted. It isn’t.
6. The hardest part about mornings are:
Diabetes doesn’t make mornings more or less difficult for me. Mornings are tough because of the thyroid cancer and the complete thyroidectomy I had done in January of 2010. I’m now on synthetic thyroid hormone, which I take in the morning, which needs about 30 minutes in my system before eating. So if I wake up starved, I still have to take my pills and then hang out.
7. My favorite medical TV show is:
8. A gadget I couldn’t live without is:
There’s no one gadget I couldn’t live without. I could live without my insulin pump and go back on injections, though I’d rather not.
9. The hardest part about nights are:
The snacks before bed, infrequent though they are, and worrying about the middle-of-the-night lows. That, or the high blood glucose that happens on occasion before I go to sleep, and then worrying about whether or not I’ve issued a correction bolus that’s too much. Usually I remain awake another 90 minutes or so just to make sure. Then I’m tired the next day.
10. Each day I take:
Medicines? Yes. Insulin (infused). Synthroid (levothyroxine; because I don’t have a thyroid). Simvastatin (mostly a preventive my PCP and endo have me on because I do have diabetes and they feel it’s fine to take it). Citalopram, 20 milligrams, for depression. Allegra (fexofenadine) most of the year for allergies. I also have an inhaler for my asthma, but that’s something I rarely use.
11. Regarding alternative treatments, I:
Am not skeptical, necessarily, but I don’t often go in for that. I find it’s enough for me to do what I’m doing by way of trying to live well with my illness. I exercise, try to eat right (often fail), and make sure I visit my endocrinologist and PCP as prescribed. I’m not going to obsess about alternative treatments or muck about for the next best thing to help me live a wonderful life as a person with diabetes. I already have a wonderful life, and I’m a person with diabetes.
12. If I had to choose between an invisible illness or visible I would choose:
Invisible. However, I could write a book on this question. I am not at all trying to sound insensitive to those with visible illnesses when I say sometimes, dang it, I want people to know what it’s like being a person with diabetes, and if my illness manifested itself physically, maybe they’d think about it. But most people don’t think about it. I didn’t when I didn’t have the illness. This is only how I feel when I’m down on myself and kind of want a pity party, though.
13. Regarding working and career:
I’m thankful I don’t have a line job in a factory, or any other number of careers in which a break to check my glucose, or a break to use the bathroom (because I try to drink a ton of water) is something I’d have to plan for. My illness has in no way affected my ability to do my job.
14. People would be surprised to know:
Hmm. I doubt people would be surprised to know much about me regarding my illness. I do blog about this wretched condition on a weekly basis, and I have been for over four years now.
15. The hardest thing to accept about my new reality has been:
It’s not really a new reality any longer. The most difficult thing was getting used to eating and covering that food with insulin. That took a lot of practice.
16. Something I never thought I could do with my illness that I did was:
The first few years I had diabetes, I’d given up on thinking I’d be able to push myself to the limits, or at least close to my limits, in exercise. I worried about going too hard during cardio (spinning or running) or lifting to failure. But I’ve adapted, learned how to treat the time leading up to a workout, what I need to put into my body, and, for the most part, how my body reacts to different types of exercise.
17. The commercials about my illness:
Are condescending. All drug and health-related commercials are pretty much gross to me. I rarely pay attention.
18. Something I really miss doing since I was diagnosed is:
I don’t miss anything. Not really. I could say I miss eating something and not thinking about the consequences of what I’m eating by way of how it will affect my blood glucose. But that’s more or less something I find it’s easy to complain about: “It sure would be nice if I could just have that bowl of ice cream without having to….”
19. It was really hard to have to give up:
I’ve given up nothing. In fact, I’ve probably gained insight, perspective, as well as a realization of how much people really do care.
20. A new hobby I have taken up since my diagnosis is:
When first diagnosed, I jumped head-on into flower gardening. That lasted about three years, but now that the yard is doing quite well without my constant hovering, I’m more into making sure I get to the gym frequently. I often did cardiovascular workouts prior to my diagnosis, but now I lift free weights. That’s something I never did prior to my illness.
21. If I could have one day of feeling normal again I would:
Ask why whatever powers that be were granting my just one day of feeling normal. That’s poopy to do. And what “normal” means, or what they think it means, if I was given one day. I feel normal most days.
22. My illness has taught me:
More than I can answer in a few sentences. Read all of my blog entries from July 2007 to now, I guess.
23. Want to know a secret? One thing people say that gets under my skin is:
“Are you not eating that because of your illness?” Because my answer is always, always, “No, I’m not eating that because I don’t want it.”
24. But I love it when people:
I don’t have any “Oh, that’s just wonderful that she said…” regarding my illness.
25. My favorite motto, scripture, quote that gets me through tough times is:
I don’t have any of these.
26. When someone is diagnosed I’d like to tell them:
Know that your overwhelmed world will slow back down and you’ll fall into a routine and you’ll even one day forget how amazingly scary this time was.
27. Something that has surprised me about living with an illness is:
How after a while that illness isn’t something that rules your life. (Depending on your perspective, actually. I could always make the argument that diabetes does rule my life, since it’s systemic and I have to give consideration to it all of the time. But I’m not going to do that.)
28. The nicest thing someone did for me when I wasn’t feeling well was:
Bought me a one-cup coffeemaker. Actually, when I’m not feeling well… when I’m not legitimately feeling well (I can often slip into hypochondria), my wife does incredibly nice things for me.
29. I’m involved with Invisible Illness Week because:
I’m not involved other than writing a blog entry and answering these questions a fortnight too late.
30. The fact that you read this list makes me feel:
As if you’re still sticking around and that what I say on this blog matters to some of you some of the times. I enjoy reading in the comments that something I’ve said makes you think about an aspect of your illness in a different (and hopefully better) way.
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