Tuesday, November 18, 2014
My belated response to the Invisible Illness Week list of questions
I was recently given a link to a page about invisible illnesses. http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/30_things/
CPT2 seems to qualify: It is difficult to know somebody is experiencing an episode, and medical providers often have only the patient's self-reported description to go on. Given that, I thought it might be interesting to answer the 30 questions myself:
30 Things About My Invisible Illness You May Not Know
1. The illness I live with is: CPT2 deficiency.
2. I was diagnosed with it in the year: I was diagnosed December 8, 1992.
3. But I had symptoms since: I can remember having symptoms around kindergarten. I actually can't remember a time before I had symptoms.
4. The biggest adjustment I’ve had to make is: Practicing mindfulness about my physical status and limitations.
5. Most people assume: I'm fine. Even those who know I have CPT2 have a hard time understanding that somebody can have a significant condition yet be perfectly fine almost all of the time.
6. The hardest part about mornings are: I have three daughters, and getting to see them first thing in the morning is always great. Actually, I feel great most mornings -- being nearly motionless for eight hours isn't exactly a trigger for a muscle condition.
7. My favorite medical TV show is: Mystery Diagnosis. CPT2 was featured on it twice. At least I have something objective to point to to help people understand my condition.
8. A gadget I couldn’t live without is: My brain. Seriously, I love computers, hardware and software, but my brain -- my "wetware" -- is my favorite gadget.
9. The hardest part about nights are: Trying not to eat late at night. If I eat late at night, I replenish my carbs for the morning, but 99% of nights, my carbs are already just fine. I just have trouble telling when it is one of the 1% of nights that I actually need to eat.
10. Each day I take: Bezafibrate (Bezlip) 400 SR in the morning. There is some evidence that it up-regulates CPT2 production.
11. Regarding alternative treatments I: Don't have a choice. There are no actual, scientifically validated treatments (other than Bezafibrate, which is only partially effective). There are so few people who have CPT2 that anecdotal evidence ("MCT oil works for me", or "Corn starch helps") carries a lot of weight.
12. If I had to choose between an invisible illness or visible I would choose: I have never known life without CPT2. I love myself for who I am, flaws and all. I do wish that I had been diagnosed earlier, I could have avoided a lot of pain.
13. Regarding working and career: I get distracted at work and don't remember to eat, which then causes me to have trouble working. When work stresses me out, that can sometimes trigger an episode.
14. People would be surprised to know: How terrifying it was before the Affordable Care Act, when I lived in fear that I would lose my insurance and be unable to get new insurance (because of the preexisting condition I was born with). I can't imagine being unable to afford to get medical help when I need it.
15. The hardest thing to accept about my new reality has been: Well, it isn't a new reality. It is an evolving reality. As I learn more about my condition (when I was diagnosed, there were fewer than 50 diagnosed cases -- now we're in the hundreds), I try to change my lifestyle to fit. Old habits being hard to change and all.
16. Something I never thought I could do with my illness that I did was: This question doesn't fit my experience. People with CPT2 can do anything "normal" people can do, we just have to be very careful about how we do it. I suppose if I ran a marathon without constantly taking in carb calories I would be in deep trouble, but my limits are always in combinations: If I do X and Y happens, I have a problem.
17. The commercials about my illness: I wish there were commercials about my illness. Too few people have it for it to be of even the most remote interest to the drug companies.
18. Something I really miss doing since I was diagnosed is: Nothing. I don't remember a time before I was aware that something was amiss, and by the time I had a formal diagnosis, I had already structured my life around my limits.
19. It was really hard to have to give up: Eating whatever combination of carbs/fat/protein I wanted.
20. A new hobby I have taken up since my diagnosis is: I think my diagnosis had a subconscious effect on my choice of hobbies. Before my diagnosis I took up scuba diving, mountain biking, swimming, etc. After my diagnosis I took up far less physical hobbies. I never spotted that pattern before today.
21. If I could have one day of feeling normal again I would: I'm lucky. I have many days of feeling normal. If I had one day when I didn't have to worry about CPT2, I'd go on a long hike (exercise = trigger) in the snow (cold = trigger), and I'd power it all by eating fat (high fat diet = trigger) and protein.
22. My illness has taught me: That it is hard to miss that which you never had. I've always had CPT2, I've always lived with the symptoms, but I've never thought of myself as disabled. There have absolutely been times when I couldn't walk from the bed to the bathroom, but my internal dialogue is not "oh, poor disabled me".
23. Want to know a secret? One thing people say that gets under my skin is: "You got the right answer, but you got it the wrong way, so you're wrong." I know, it has nothing to do with CPT2, but as an inventor, it makes me nuts when people say that.
24. But I love it when people: Open up about their own life experiences in response to my opening up about my condition. As humans, we have so much in common -- but we find ways to pretend we don't. Honestly discussing my own vulnerability gives people a safe place to talk about their own issues.
25. My favorite motto, scripture, quote that gets me through tough times is: I love myself.
26. When someone is diagnosed I’d like to tell them: Research the disorder. Track your own experiences and how your body responds. Network with other people who have it.
27. Something that has surprised me about living with an illness is: I've always lived with it. So no surprises.
28. The nicest thing someone did for me when I wasn’t feeling well was: Believe me. This is a disorder that often involves no outward indicators that anything is wrong.
29. I’m involved with Invisible Illness Week because: Somebody sent me the link, and it resonated.
30. The fact that you read this list makes me feel: Like I accomplished something.