demotu: Invisible Illness Week

demotu (

demotu) wrote,
@ 2009-09-15 15:56:00

Entry tags:

add, me and my brain, meme

Invisible Illness Week
From rm and mellacita.

1. The illness I live with is:
Attention Deficit/Hyperactivity Disorder

2. I was diagnosed with it in the year:
February 2009

3. But I had symptoms since:
As long as I can remember.

4. The biggest adjustment I've had to make is:
Accepting that I couldn't fix myself. All the lifestyle changes I was trying to do before, but until I got medication it never worked.

5. Most people assume:
I honestly don't really know. I know some people have assumed I had AD/HD, but probably more than said it. I think people wouldn't pick up on anything right now, except maybe think I talk a lot and fast, but before the meds, gee. A lot of things. That I'm not actually interested in our conversation because I keep getting distracted or interrupting. That I don't want to beta your fic because I haven't been able to read it all yet. That I'm lazy or a procrastinator and have terrible study habits. That I have a shitty memory. That I don't want to be an equal partner because I don't do my chores. (That one sucked.) That I'm addicted to my computer. (I wasn't: it was a coping mechanism.) So many things!

6. The hardest part about mornings is:
Getting out of bed. One of the less-obvious side-effects of my AD/HD is that I have low energy levels due to the lack of dopamine in my brain, and getting out of bed in the morning can be so, so difficult. Once I metabolize the Concerta, the sleepiness that used to follow me through the day is gone.

7. My favorite medical TV show is:
Eh. Used to watch ER a bit, seen some Grey's anatomy. Not really my thing, but not because of the AD/HD, since that was before the diagnosis.

8. A gadget I couldn't live without is:
My cellphone. I use it to set alarms all the time so that when I get distracted and forget I have to leave or do something, it reminds me. Various things perform this function for me - email, planners, alarm clocks, but the cellphone is the most portable and gadgety.

9. The hardest part about nights is:
Going to sleep before the Concerta or Ritalin wears off. Not happening - it's a stimulant for sure!

10. Each day I take [?] pills & vitamins.
30mg slow release dose of Concerta. If I have to do something in the evenings that requires above-average focus, I supplement it with a 10mg short-acting pill of Ritalin, since I find the Concerta wears off after about 12 hours.

11. Regarding alternative treatments, I:
Haven't tried too much that's really medical, just focused on the lifestyle adjustments that AD/HD requires: a LOT of organization, redundant systems of reminders and notes and back-up plans, tricks to bleed out excessive energy so it doesn't distract or bother.

I'm not in therapy, since I'm feeling sufficiently able to function on my own right now and not emotionally off-balance, and I don't actually know what non-medical options there are right now! I'm fit, I eat well, I get good sleep, I have good relationships with family and friends, and I'm not stressed out, so I don't think a lifestyle change would do anything.

12. If I had to choose between an invisible illness and a visible one, I would choose:
An invisible one. I get to control who knows this about me, and while I'm probably more happy to share than the average person, I'm glad I get that choice.

13. Regarding working and career:
I fucked up my GPA over it, though fortunately managed to keep my physics courses at par. Failing two midterms in one day was the final straw in terms of going to the doctor for help, and I dropped two courses and asked for help in another in order to make it through that semester. If I'd gotten diagnosed earlier, I probably would have had a lot better - academically and emotionally - first three years of university. I didn't, though, and this is the first semester where I get the chance to finally see if I can live up to the potential I know I have inside of me. Results pending.

Long-term, though, the undiagnosed AD/HD severely affected my career dreaming and planning. The worse it got, the more I thought I'd never be able to get a PhD or be an academic, because there was no way I'd be able to focus in such a self-directed environment. And that spiraled into not thinking I was going to be able to succeed at anything, because I was completely unable to complete tasks or plan things or learn new material in such an overwhelming way. The best thing about getting diagnosed is that I feel like I have a future in what I'm interested again.

14. People would be surprised to know:
That I've had it all my life. You don't "get" AD/HD - the diagnostic criteria for adults require it to be present throughout childhood. I was top of my class all the way to the end of high school, and I didn't fit the stereotype of aggressive, frustrated, and failing boy. But that's just how one subset of AD/HD sufferers present - I, and many other girls in particular, presented differently, and because I was a quick learner and eager to please, I managed to succeed when the material was easy enough (as it was all the way through high school).

It was only when the material - and life - got complicated enough that I was no longer able to compensate. That's what made it unbearable for me, and obvious for others. But I still had it when I was young - sometimes I wonder if I might have stuck with more extracurriculars I got bored with and gave up on despite enjoying if I'd been diagnosed younger.

15. The hardest thing to accept about my new reality is:
That this thing is real, and not something I've made up to excuse my laziness/poor habits/bad memory/procrastination. That getting a medical boost is okay. That I actually do have AD/HD, even when I've been taking the medication long enough I've forgotten what it feels like to be off it.

16. Something I never thought I could do with my illness was:
See above about being an academic. I never thought I'd be able to do anything that required self-direction, because I couldn't make myself do it, no matter how hard I tried.

17. The commercials about my illness
Hm. I don't watch much TV with ads anymore, so I don't think I've seen any since I got diagnosed, and don't recall any from before.

18. Something I really miss doing since I was diagnosed:
Napping. I can't do it when I've been taking stimulants all day, even if I'm actually underslept. Only not really, because the napping got to be a super-excessive escape from reality in the worst of ways.

19. It was really hard to give up:
Fortunately, I haven't had to give up anything.

20. A new hobby I've taken up since my diagnosis is:
Reading! Okay, that's an old-new hobby, but I lost my ability to read more years ago than I care to admit. I used to be able to hyper-focus on books as a child, but that went away, and it had been ages since I'd been able to read more than a couple chapters of any book. I missed it so, so much.

21. If I could have one day of feeling normal again, I would:
I do now, I think. I used to think the way my brain functioned was normal - it raced, it flickered, it was like constant channel-changing with multiple channels playing at once, overloading and overwhelming and sometimes making me feel physically nauseous. On the meds, that's gone. I'm lucky that though AD/HD is chronic, mine is responsive to long-used and low-side-effect drugs.

22. My illness has taught me:
That it's okay to admit you can't do it alone.

23. Want to know a secret? One thing people say (about my illness) that gets under my skin is:
"America is AD/HD". (Really?) "AD/HD is over-diagnosed." (Not in girls it isn't.) Both of these are just ways of saying "your disability isn't real because some of the criteria are things everybody has". That's true of every mental disability.

24. But I love it when people:
Get that even though it's not the worst or most serious or untreatable of disabilities, it fucked my life up royally and was completely emotionally, mentally, and physically overwhelming.

25. My favorite motto, scripture, quote that gets me through tough times is:
"I don't always feel lucky, but I'm smart enough to try." (Ani Difrano) Because that really describes my worldview: I've got it damned good, even when I don't, and living like I do is half the battle.

26. When someone is diagnosed I like to tell them:
YOU AREN'T LAZY, AND YOU AREN'T ALONE. And there are tried-and-true drugs that help the root of the problem that may very well help you: find a doctor who will listen to you and help you try them. And most of all: I know you've tried. I know you've read the self-help books and bought ten planners and set up thousands of reminders and shut out all distractions and tried to just make yourself better. If you've done all that and you're at the end of your rope: get help, because it's there and it's okay to need it.

27. Something that has surprised me about living with an illness is:
I even qualify to fill out this survey. I'm a "live in the moment" person, so the longer I'm functioning well the easier it is to forget that if I stop taking those pills, I fall apart. Maybe some day I'll be brave enough to try it, but honestly? I doubt it. The Concerta works amazingly, and it has almost no side-effects, and when I do think about it, I'm terrified of going back to how I was before.

28. The nicest thing someone did for me when I wasn't feeling well was:
Tried to work with me to be able to function around the AD/HD - mostly B, though there have been others. And told me to get help, since without him saying "attention deficit disorder" I never would have considered it.

29. I'm involved with Invisible Illness Week because:
I'm not, but I saw this meme, and I've been meaning to write up a post detailing my experiences in a cohesive form. This is because I actually helped someone recently by sharing my experiences, and if I can do that again in any way, shape, or form, it's worth it. I didn't know anyone who had AD/HD when I got diagnosed, and that was scary because even though my friends and family were supportive, nobody could say "I've been there, I've seen it from where you are now, and it will get better".

30. The fact that you read this list makes me feel:
Good. I'm not shy about talking about it, but I still have a hard time being able to say, "Hi, my name is dem, and I have a learning disability". So, hi, my name is dem, and I have a learning disability.

This post has comment count unavailable comments at Dreamwidth.

(13 comments) - (Post a new comment)

	mellacita 2009-09-15 11:49 pm UTC (link)
	Hi Dem. Thanks for posting this. :) Metallica? Hee. Sorry, the 80s girl in me cracked up to see that. (Reply to this) (Thread)

	demotu 2009-09-15 11:51 pm UTC (link)
	LOL, whoops. Er. Will fix that. (Reply to this) (Parent)

	demotu 2009-09-15 11:53 pm UTC (link)
	Also, now you know how I read your name. I have a thing where I know what letters are in a word, but not their order, so when I try to say them out loud I fail. (Reply to this) (Parent)(Thread)

	mellacita 2009-09-16 12:44 am UTC (link)
	Hee. Not a problem. I am used to it. I answer to whatever. My real name is Caryn, like Karen, but in my life I have been called Car-In, Carlyn, Carolyn, Crayon... For the record, though, it's Mel-ah-SEE-ta. So how do you pronounce yours? Now I wonder if I do it right! (Reply to this) (Parent)(Thread)

	demotu 2009-09-16 01:10 am UTC (link)
	De (like the french de) moe-too? The stress on the "mo" if I'm saying it all together. But I actually mostly just think it as "dem" these days, oddly. Mellacita, mellacita, mellacity. Okay, now I've said it out loud, I won't forget! That's the problem with text-based communication, there's rarely any need... (Reply to this) (Parent)

itcamefromjapan
2009-09-16 01:16 am UTC (link)

Thank you so much for sharing this. I was diagnosed with AD/HD last spring, and even though I understand intellectually that it's not all in my head (at least not in that sense), that it's not some sort of inherent laziness or failure on my part, it's still so easy for me to slip into that mindset - which, of course, never leads anywhere good.

When I read accounts like these, though, it makes it that much easier to regain some perspective. Because having to realize that "you can't fix yourself" (despite all of the coping mechanisms you've created, and the fact that everything seems just within reach, if you could only try that extra little bit harder this time and make it work)? Being a girl, a bright girl with strong grades who doesn't bounce off the walls, and thus slipping through the cracks? Being able to compensate sufficiently for long enough that it doesn't occur to you - or anyone else - that it's a problem until the compensation stops working and you're in a giant, upsetting mess? Getting so used to taking this for granted that you lose hope of being successful in life and achieving your goals?

God, all me. And I'm doing a lot better now - my doctor and I are tweaking my dosage, but I've been taking Ritalin and found it to be helpful - but, like I said, it's still so easy for me to forget just how real this is, and all of the little ways in which it permeates my life and causes these big, potentially devastating, results. It means a lot to find reminders that it affects other people in similar ways, and that it's something I can handle.

I've been forming a post in my head for over a month now about all of this, and how it - and my depression, which is very much intertwined but still its own story - have shaped my life recently, particularly when it comes to family and school. You've been so articulate about your experiences, and I think it's helped me sort out my thoughts a bit more. So, thanks again. I needed to read this.

(Reply to this) (Thread)

demotu
2009-09-17 03:01 am UTC (link)

Thank you for sharing this, too. The best thing about speaking up is hearing other people's experiences, I think. I hope mine helped, even a little. This is still all so new to me, but talking about it really helps, since that's how I process.

it's still so easy for me to forget just how real this is, and all of the little ways in which it permeates my life and causes these big, potentially devastating, results

That's such a perfect description. It's an illness that's thrown around in pop culture so casually, which makes it so easy to forget - even when we've been there - that even something that simple can be so all-consuming. I was lucky enough that my brain seems to be built to resist depression (except on the BCP!) but goodness, even with that being true I felt like I was constantly teetering on the edge of disaster.

I'd love to read anything you write about it - do let me know if you do, since I'm not checking my flist as often these days.

(Reply to this) (Parent)

paragraphs
2009-09-16 02:13 am UTC (link)

Great post. You've come such a long way already. Here's to a new semester, and what can happen for you!

My niece is 13, and is on two medications now after a horrendous spring, in and out of the Children's Psychiatric hospital from severe depression, cutting, gosh all sorts of things her parents had no idea about as she covered them up (physically and figuratively) so well. And, she is a fantastic student...no cause to suspect anything at all was so very wrong. It took awhile to figure out exactly how to help her, but now thanks to the two meds she is on, she is a completely different person. Probably saved her life, as she was getting extremely depressed, and worse.

Glad that you finally, FINALLY! figured out what you needed, what was wrong, how to make the changes you had to make. I don't live with an invisible illness, I can't imagine it honestly, but what you write here (and I read RM's also) really touches a person.

(Reply to this) (Thread)

demotu
2009-09-17 03:08 am UTC (link)

Thanks C. *hugs* I'm glad you don't have anything to fight with! Some days I feel the same way, because I got lucky and found medication that was effective pretty quickly.

I think that really is often the case with girls. People joke about us being hypochondriacs, but it seems in terms of mental illness we do a much better of job appearing to function in society "normally" farther into being sick. I think it goes back to the pressure we feel to not disappoint on so many levels, and there's just less acceptable space to be weird or act out or whatever, so we channel it inwards and hide it away. I really hope society continues to move in the direction of accepting and allowing dialogue on mental illnesses, because I do think hearing other people talk honestly about their experiences is the biggest help to those suffering in silence.

(Reply to this) (Parent)

jasmine_rosalee
2009-09-16 06:44 am UTC (link)

I find it really interesting to learn about the disorder and your experiences. It's great that you feel comfortable to share with us :)

I remember once when you were describing your illness and you said as an example of how distracted you'd get that you would have maybe ten things open on your computer and you'd write about half a sentance before being distracted (that's what I remember anyhow). Has that changed now you've been on the medication?

(Reply to this) (Thread)

demotu
2009-09-17 03:05 am UTC (link)

It really, really has. I ended up spending so much time online because it was the only environment that could provide me with constant distractions and enough overwhelming information (that was the weird thing - the faster information was thrown at me, the less anxious I was because my brain had all these things to do) that let me get away from needing to focus. But it sort of got worse with it, because it encouraged all my bad habits and became a safe haven from life.

Now? Well, I've got a new (to me) computer that's a desktop, so I'm no longer carting around my laptop like a safety blanket against boredom, I'm reading far more print and far less fanfiction (though still the good stuff! I don't discriminate) and it doesn't make me antsy to go the whole day without checking my email. And when I start replying to a comment - like this one - or reading an article or story or email, I finish that before clicking on to the next thing. It really is startling, all these things that I just couldn't do before that are suddenly easy.

I'm glad you found it interesting! It's really not talked about much, that I can see. I guess that means it is pretty "invisible", even if everyone's heard of it.

(Reply to this) (Parent)(Thread)

	jasmine_rosalee 2009-09-17 06:25 am UTC (link)
	It's good to know that these things are better and easier for you now :) It's true that lots of people have heard oF the illness, but I don't think everyone knows what it's really like to live with it. Thanks again for sharing! (Reply to this) (Parent)

doctor_addicted
2009-09-18 05:57 am UTC (link)

Thank you for sharing this in such a detailed and honest manner.
I had been wondering sometimes what it was exactly that seemed to make your life harder and harder on you (but I didn't feel a close-enough friend to warrant an in-depth search of your journal - too intrusive) so this post answered all questions.
I agree that the turning-point was that you asked for assistance when things got too much eventually and I'm very glad for you that life has started to look up now because there's actually good medication you can take.
I'll be thinking of you.

(Reply to this)

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