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A friend recently posted this in their journal. I've spent the last hour trying to get to sleep but finding myself going through a range of thinking about my own responses to this and how the questions resonated with me, and questioning whether I'm sick enough to be able to legitimately respond to this. I got myself pretty worked up being worried about how I'm just whining and not really ill and how if I did this it would be disrespectful of my friends with very serious chronic conditions which clearly have a much more significant effect on their lives than mine. And then I decided, if I'm going to spend hours losing sleep thinking over it, it's probably important enough to write down, and if anybody has a problem with it, they can talk to me and explain why and I can post an apology or something.
So, here goes: 30 Things About My Invisible Illness You May Not Know
The illness I live with is: Not conclusively diagnosed. Past diagnoses have included tendinitis, "huh, that's weird", ulnar neuropathy, "you look like you might have slight scoliosis?", arthritis, generic core muscular weakness, etc. The only thing everybody agrees on is that, whatever's wrong, it's not carpal tunnel syndrome.
Edit: I missed some diagnoses last night: RSI, referred pain from something going on in either the shoulders or the lower back, probably more that I'm not thinking of right now.
I was diagnosed with it in the year: See #1
But I had symptoms since: Long enough ago that I can't remember conclusively. Probably sometime in the '93-'97 range. Anybody happen to remember when I got that tendinitis diagnosis with like 4 sessions of PT? Probably not more than a year before that.
The biggest adjustment I've had to make is: I'm trying to learn not to spend hours at a time on a single task. Spending hours at a time on a single task is the only way I know how to work effectively. You do the math.
Most people assume:
It's clearly not that bad, look how functional I obviously am.
I can't do anything at all that involves my hands safely.
I have carpal tunnel syndrome.
The hardest part about mornings are: Realizing I rolled over in my sleep, and now my wrist/forearm/shoulder/pinky is going to be extra painful today.
My favorite medical TV show is: House, MD. I totally agree with Del about this one; I love the fantasy of a whole team of doctors totally focused on the idea of figuring out what's going on and fixing it.
A gadget I couldn't live without is: Every time I spend a couple hundred bucks on another incremental improvement to the ergonomics of my computer setup, it makes things a little better but doesn't make it all go away. No device gets this place of honor, although the heating pad I can fall asleep on safely comes close.
The hardest part about nights are: Finding a position I can safely and comfortably sleep in and staying in that position all night. I have some pretty specific instructions on what I'm not supposed to do because it's probably making things worse, and that includes a lot of things I naturally do in my sleep. But the worst part is that sharing a bed now has this complicated extra layer of shifting around until I can find some way to lie that's safe and comfortable and cozy and sharing and comfortable for my partner, and "I'm sorry, tonight the weight of your head on my shoulder really hurts and is a problem." and "No, I can't spoon with you like that; it puts too much of my own weight on my lower elbow." and crap like that and one of the most simple, beautiful experiences I know turns into an awkward extended negotiation full of tons of uncertainty in a shifting landscape and I don't want to conclude I need to spend the rest of my life sleeping alone.
Each day I take 0 pills & vitamins. [I've been on a number of things over the years, but the anti-inflammatories have shown no discernible effect, and the analgesics likewise [ethanol, frighteningly, excepted]
Regarding alternative treatments I: Am investigating options; affordability being a concern.
If I had to choose between an invisible illness or visible I would choose: Fuck that. [It would be nice to have a name to help people understand, but they'd only hear carpal tunnel syndrome anyway.]
Regarding working and career: I lost my job last summer due to extended absences as I tried to diagnose, medicate, and allow recommended rest to help cure my ills. I am not currently employed, and am not yet sufficiently comfortable that I've come up with functional work habits given the reality of my situation to seek employment: I don't want to take on a responsibility if I expect to be unable to meet it. I am currently living on savings from my last employment, and no, I don't know of any assistance programs I'm eligible for.
People would be surprised to know: I'm perfectly capable of picking up that table and carrying it around, though I might pay for it tomorrow. Carrying the paper "doggie bag" home two blocks from the restaurant, though? Excruciating by the time we get halfway home if I don't think about what I'm doing.
The hardest thing to accept about my new reality has been: They're probably not going to figure it out, and this is probably forever.
Something I never thought I could do with my illness that I did was: Play twitchy video games without spending the next three days regretting it. Apparently what does/doesn't make things worse in this respect can also be highly idiosyncratic.
The commercials about my illness: Don't exist.
Something I really miss doing since I was diagnosed is: Cuddling without worrying about where my arm is.
It was really hard to have to give up: Gaming regularly [the last few weeks not withstanding, and it's going to be hard again if I decide I need to give it up again]
A new hobby I have taken up since my diagnosis is: There've been many for pure reasons of accident of chronology, like dance, and even board gaming in a way, but nothing the way this question intends.
If I could have one day of feeling normal again I would: Break out the Nintendo to play through Zelda a couple times for speed, then switch over to the computer and jump on Puzzle Pirates and get a friend to take me out so I could try to finally hit all Ult. Then I'd cook a big meal that involved a lot of heavy whisking and stirring viscous liquids and sauteeing in big cast iron skillets. I'd finish up with some mindblowing sex where I didn't have to worry about whether I was overusing my hand [heh] or whether I was positioned in a way that was putting too much pressure on one of my arms, and, finally, we'd fall asleep exhausted just where we lay.
My illness has taught me: It's in the process of teaching me the technique of pacing: I've always tended to approach tasks in a "work intensely for as long as you can possibly stand" sort of manner.
Want to know a secret? One thing people say that gets under my skin is: "How's your carpal tunnel?" "Have you tried <popular speech-to-text software title>?"
But I love it when people: Pick up the doggy bag off the table without my having to ask.
My favorite motto, scripture, quote that gets me through tough times is: N/A
When someone is diagnosed I'd like to tell them: I'm sorry they're sick, but I'm glad they have a definitive diagnosis, and I hope it helps them get effective treatment and not have to deal with the frustration of uncertainty.
Something that has surprised me about living with an illness is: How much of my life it affects, and yet how easy it can be to forget about it temporarily; usually just long enough to do something I'll regret.
The nicest thing someone did for me when I wasn't feeling well was: I feel terribly guilty that I don't know what to put here. It's not that there hasn't been anything, it's just that I can't recall any useful memories.
I'm involved with Invisible Illness Week because: The survey questions spoke to me; even those which completely fail to apply. I'll be reading more, though.
The fact that you read this list makes me feel: Thankful that you want to understand better.
From National Invisible Chronic Illness Awareness Week
A couple of things I'd like to add, because it didn't quite fit in. They seem to have gotten a bit ranty now that I started talking:
If I ever get a vacant look when we're having a conversation, or I completely lose track of the thread of a conversation we're having, I'm really sorry. Sometimes I just go blank for a few seconds. You know how you can be reading a book and suddenly realize that while you read every word on a page none of it registered? Like that. I have no idea if this is connected to my chronic pain either directly or indirectly, but it happens, even if I'm giving you my full attention and concentrating really hard on processing what you're saying. I hate this.
My sleep needs seem to be really high. Whether this is because I'm not sleeping effectively because I'm in pain, I'm in pain because I'm not getting enough sleep, I feel like I need more sleep because I'm depressed, or I'm just not eating enough and it's making me lethargic, I have no idea. This relates to the previous, too; I'm often really tired. Except, of course, when I randomly seem to have tons of energy and everything's fine. Then too, sometimes.
Writing with a pen is one of the most excruciating things I can imagine. I can get through a couple sentences ok, but once we're closing on a full paragraph, it starts to get painful. By the end of filling a Letter-size page with text, you'll see me curled around my arm protectively, and before that you might get to see me throw the pen clear across the room as my instinctive response to pain overrides any conscious control I may have over my motor function. Most new doctors have at least a double-sided page of information to fill out.
Look, if the problem were with typing, then spending a month not typing would have a noticeable positive effect, and it probably wouldn't hurt more to write for a page than to type for 8 hours straight [not that the latter is a good idea]. I'm sure my computer habits are a piece of the puzzle, but it's clearly not that simple. Also, at least try to understand that an overwhelming majority of my training and any career-related progress I may have made in the past go out the window if I have to give up typing, and be at least a little sensitive to what that implies? Thanks.
It's not fucking carpal tunnel syndrome. I don't think I've ever had a conversation with someone in which they ask and I tell them about the problems I'm having without my explicitly stating that the one single thing everybody agrees on is that it isn't carpal tunnel syndrome. So when, a couple weeks or months later, you well-meaningly ask me about the carpal tunnel, while I appreciate that you're attempting to express concern and that you remembered I'm having trouble with my hands, and probably that I work with computers, it's really hard for me not to get annoyed that you threw on the only label you had even though I explicitly told you it was the only thing we knew didn't apply. The longer and better I've known you, the less of a pass you get for this.