It’s just about the end of National Invisible Chronic Illness Awareness Week (September 14-20) and since I have one, I thought I should participate. I found this kind of interesting meme on a migraine site and it seemed an appropriate and kind of fun way of posting about my headache without getting all depressed about it (especially since this past week has been particularly hard in that respect).
1. My illness list includes but is not limited to: a headache that I can best describe as being sort of like a migraine but not quite that I’ve had every minute of every day for over ten years now (ten years and twenty-four days, actually).
2. I was diagnosed with: New Daily Persistent Headache
3. But I had symptoms since: It started pretty definitely on August 26, 1999, although now I think that I might have had auras as a kid and never had it diagnosed because I just thought everybody saw things like that.
4. The biggest adjustment I’ve had to make is: Learning to slow down and deal not being able to do everything I want to sometimes
5. Most people assume: “It’s just a headache.” I’ve come to hate the word “just” with a burning passion.
6. The hardest part about mornings are: Every morning there’s a moment when I first wake up when I realize that the pain is still there and even after ten years it’s still incredibly disappointing every time.
7. My favorite medical TV show is: I don’t really like medical TV shows. Not for any particular reason, I just tend to find them boring. The everyday workings of hospitals and the love lives of the people who work there just aren’t that interesting to me. I think there was a medical show with Dick Van Dyke at one point (Diagnosis Murder maybe?) that was a mystery show and I remember enjoying that, but it’s not on anymore as far as I know.
8. A gadget I couldn’t live without is: I don’t know. I’m not actually big on gadgets. Maybe my computer, if that counts as a “gadget”?
9. The hardest part about nights are: Falling asleep in the first place. I’m terrible at that. I can lay awake thinking about things forever. I’m totally a night owl!
10. Each day I take: two medications at bedtime and sometimes extras if the pain is bad.
11. Regarding alternative treatments: I haven’t had a ton of luck with alternative treatments, but I have found things that help a little (and, like most headache sufferers, I’m willing to try most things). Yoga (structured around and to help the headache) can help a little, but only if it’s already pretty good, the smell of peppermint takes the edge off the pain when it’s really bad and often makes it bearable until the medicine can kick in, head massages can reduce the frequency of the bad spikes, but are expensive. Nothing else has made a big difference for me.
12. If I had to choose between an invisible illness or visible I would choose: Well, I’d rather neither. That’s hard to say and I’m not sure I actually can choose here. I think they both suck equally for different reasons.
13. Regarding working and career: My headache has definitely changed how I went about following what I want for my career, but I’m still hoping to get there eventually. It also made working really, really challenging, both while being at work some days and in trying to justify sick days when I didn’t seem sick to the managers. And fainting in front of customers is generally a bad idea, but not something I could avoid at times. So it’s absolutely affected my work and jobs. It affected where and how I worked too, but that’s an even bigger mess.
14. People would be surprised to know: I can see some uses for some of the effects of my headache and I’m thinking about writing a story with that in mind.
15. The hardest thing to accept about my new reality is: having to realize that I have to slow down and pace myself all the time, that I have to think about everything – what I put on in the morning, what I choose to eat, where I sit in a room, etc. because it all affects what happens to my headache and the headache affects it.
16. Something I never thought I could do with my illness that I did was: Work up to a leadership position in my previous job. Given how hard it was just to work full time and how much I frustrated the managers by having to go home “sick” with a headache sometimes (and being sick longer than anyone else when I did get a cold because my body is also always fighting off a headache), I never thought they’d trust me as a lead, but they did. And, even better, I was good at it.
17. The commercials about my illness: Technically, there aren’t any, but the commercials about headaches and migraine are dreadful and I hate them a lot. I’m sure some of them will be featured on An Ad a Day at some point.
18. Something I really miss doing since I was diagnosed is: Crying without feeling bad the whole time that I was making my headache worse by crying (or by trying not to – it’s pretty much a lose-lose).
19. It was really hard to have to give up: Reading late into the night. I loved being able to do that. Loved, loved, loved it. Not that I wanted to do it every night, I’d outgrown the need to do that, but I loved that I could do it sometimes. It was a wonderful luxury that I’m not sure I ever really appreciated fully. Now I really can’t do that because if I do, I’m going to be in a ton of extra pain the next day that I didn’t need to be in, so I really don’t do it. I read a little late sometimes, but never like I used to.
20. A new hobby I have taken up since my diagnosis is: I’m not sure that I have a new hobby, just more nuanced relationships with old ones. I game in new and different ways than I used to. I’ve started drawing and sewing more seriously, but both were things I did before. I’m sure there must be one (it’s been ten years), I just don’t know of it in particular at this moment. Sorry.
21. If I could have one day of feeling normal again I would: Throw a party (and probably spend the day second guessing it).
22. My illness has taught me: That I’m a lot stronger than I thought I was and that It’s important to slow down and pay attention to yourself. And that the world is full of weird smells.
23. One thing people say that gets under my skin is: “I couldn’t do that.” Yes, you could. When you don’t have a choice, you can do it. Trust me. And saying you couldn’t doesn’t make me feel better, it just makes me wish you thought more of yourself.
24. But I love it when people: manage to respond to my needs or help me without making me feel like an invalid or a freak or a china doll that will break as soon as you look at it.
25. My favorite motto, scripture, quote that gets me through tough times is: “Tomorrow is another day”
26. When someone is diagnosed I like to tell them: Remember that it’s not just in your head, and it’s going to be ok.
27. Something that has surprised me about living with an illness is: how much it affects not only every element of my life, but every element of my husband’s life as well.
28. The nicest thing someone did for me when I wasn’t feeling well was: My husband brought home flowers for me one day when he knew I was hurting a lot. They were just grocery store flowers he’d grabbed when he was there getting other things, but they meant a lot and made me feel so loved and happy. They weren’t the most important thing or the thing that made the most impact on my life, but they were a simple thing and it’s those simple things that make getting through day-to-day bearable.
29. I’m involved with Invisible Illness Week because: Being invisible sucks. People think that just because they can’t see something it must not exist (with the exception of God, who for some reason gets to not have to follow this rule even in people who otherwise live by it). But you can’t always see things, even when they are real and so those of us who can “see” them should talk about them to give them more credibility. Headaches aren’t “in our heads” or minor or “a women’s problem” or anything else. An enormous percentage of the population suffers from them, so it’s incredibly stupid that they get so little respect and have so little research done on them. They matter and those of us who suffer from them, whether we talk about it or suffer in silence, matter too.
30. The fact that you read this list makes me feel: hopeful and happy. Thank you.
Katie Zenke, Headache Sufferer