Invisible Illness Awareness

(In honor of National Invisible Chronic Illness Awareness Week (Sept 14-20) invisibleillness.com has composed the following questionnaire.  If you have an invisible illness and/or disability and would like to help raise awareness, and you’ve ever been forwarded one of those “getting to know you” emails, then you know the drill.  Copy and paste the following, replacing my answers with your own, and post the completed questionnaire to your blog or homepage.  Then post the link to your page here.)

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is: Bipolar Disorder II and Borderline Personality Disorder

2. I was diagnosed with it in the year: 2006

3. But I had symptoms since: I was probably 13 or 14.

4. The biggest adjustment I’ve had to make is: Being conscious about how much I need sleep.  I used to be able to get by on 5 or 6 hours a night; now I need closer to 8 or 9.  And that’s not always easy to do and still live a full life.

5. Most people assume: That I’m fine until I tell them otherwise.  To the casual observer I appear to have my shit pretty well together.  It’s once you break through my facade that you come to see the chaos that can be my life.

6. The hardest part about mornings are: Getting motivated to get out of bed.  Particularly if I haven’t gotten enough sleep.

7. My favorite medical TV show is: I absolutely love House.

8. A gadget I couldn’t live without is: My cell phone.  I’ve got a couple of good friends who text me on a pretty regular basis.  It’s a lifeline for me.

9. The hardest part about nights are: Not being able to shut my mind down so I can sleep.  And then stressing about the fact that I’m not sleeping – thus making it even harder to fall asleep.

10. Each day I take _8_ pills & vitamins. (No comments, please)

11. Regarding alternative treatments I: Would love to find something that would work; so far that’s not been the case.

12. If I had to choose between an invisible illness or visible I would choose: I think in some ways it’s easier to have an invisible illness because I can hide it (for the most part) when I want/need to.  However, there are those people who have said this is all in my mind because they don’t know me well enough to have seen the very visible by-products of my illnesses.

13. Regarding working and career: I love my job and can’t imagine working anywhere else.  I think it’s important for me to work and stay active during the day so that I don’t give my mind a chance to wander too much.  I’d be lost without my job.

14. People would be surprised to know: How long I was actually sick before I finally got diagnosed.  I’ve been struggling with this since I was a teenager.

15. The hardest thing to accept about my new reality has been: How I “managed” my life before I got sick and why I can’t just fall back on old habits.  And being tied down to a med regime twice a day.

16. Something I never thought I could do with my illness that I did was: Teach again.  I’m a technical trainer by trade and I didn’t know if I’d ever be able to get in front of a classroom again.  But I have, and I still enjoy it as much as I always have.  It’s a little more nerve-wracking now, but once I get started I’m fine.

17. The commercials about my illness: I’ve not seen many commercials about my illnesses.  I think most of the commercials about mental health drugs are decent if a little too sugar coated.

18. Something I really miss doing since I was diagnosed is: My hobbies.

19. It was really hard to have to give up: My hobbies.  And my freedom.  I often feel like a prisoner in my own mind.

20. A new hobby I have taken up since my diagnosis is: Unfortunately I’ve lost most of my hobbies due to having the shakes from the lithium I take.  All of my hobbies involved doing work with my hands and most days I just can’t manage that anymore.  However, I did start working on a filet crochet doily the other day that doesn’t look too terrible just yet.

21. If I could have one day of feeling normal again I would: Get a good sleep, do some intricate beadwork, not get angry about anything, drink a couple of margaritas, and just enjoy life for what it is.

22. My illness has taught me: Just how strong I am.

23. Want to know a secret? One thing people say that gets under my skin is: When people use a mental diagnosis in a derogatory way.  I had a boyfriend once who, in talking to his ex-wife, asked her if she was “bipolar or something” because she was acting “crazy.”

24. But I love it when people: Are shocked to find out just how much of a struggle I’m living with – because they never would have guessed it.

25. My favorite motto, scripture, quote that gets me through tough times is: I’m a big fan of the Serenity prayer.

26. When someone is diagnosed I’d like to tell them: That life can get better with the right treatment.  But you’ve got to be willing to fight for that treatment sometimes.  Never stop fighting for your own rights.

27. Something that has surprised me about living with an illness is: How easy it is sometimes to forget that there’s anything wrong with me.  I’ve had periods of time – 2 or 3 days in a row sometimes – where the only reminder of my illness is having to take  pills morning and night.  I cherish those times.

28. The nicest thing someone did for me when I wasn’t feeling well was: Treated me like a normal person.  Being treated as someone “different” always makes me feel worse.

29. I’m involved with Invisible Illness Week because: I feel it’s important to talk about invisible illnesses, thus making them more “visible” to the rest of the world.

30. The fact that you read this list makes me feel: Special.

 

starting over

The car guy is officially out of the picture.  We split up on Sunday, via text message.  I’ve found someone else who gives me what I need, and I’m hoping this one lasts.

The new guy is R.  He’s a little older than me, never been married, has a 12 year old daughter he sometimes sees on the weekends, works construction, and thinks I’m sexy.  We met on Saturday and, with the exception of yesterday, have seen each other every day.  He’s a gentleman, but ornery, too.  Definitely keeps me on my toes.  I love being with him – he’s so relaxed and laid back.  I think he’ll be good for me.  And he makes me laugh all the time.  I can see myself falling in love with him.

Life in general is going pretty decent.  My sleeping has been getting better.  I haven’t had a BPD episode in over a week.  And my bipolar seems to be pretty well under control.  I’m back in the stupid DBT class on Mondays, which I am hating, but I’ve really got no choice.  I can’t afford to lose my psychiatrist or my therapist.

 

long time, no post

I didn’t realize it had been quite *this* long since I’d last blathered on here, but damn, it’s been almost a month!  A lot’s happend in that time.  The car guy and I are still together and making a pretty decent go of it, I’m happy to report.  We’ve had some minor issues, but we’ve worked them out.  The “crisis du jour” is his phone is dying so he has to borrow his friend’s phone to call me, which means I don’t get to talk to him near enough, but he’s working on it.  At least I got to talk to him today – yesterday I missed him because I was teaching when he tried to call.

Anyway, life is pretty decent right now.  Got my man, got my health – sort of, got a good friend I’ve been talking to a lot lately…  what more can a girl ask for?

As for the dreaded DBT class, I’ve pretty well talked my mom into letting me stop taking it.  The DR who’s leading the group just totally rubs me the wrong way.  I promised Mom that I would read the stupid manual and do the worksheets on my own and she seems to be pretty satisfied with that.  Now to see what kind of reaction I get from my therapist, I’m guessing it won’t be pretty.  But I don’t care – it’s my life and I’m tired of wasting it on this stupid crap.

I’ve been having some trouble with my bipolar lately.  I just can’t seem to get enough quality sleep anymore.  The DR upped my one med, decreased the other, put me on a sedative, took me off the sedative, took me off an anxiety pill…  I feel like a damn chemistry experiment!  At one point – while the car guy was in the hospital with appendacitis – I got suicidal and the DR wanted to put me in the hospital, but I didn’t let her.  I told her I could stay safe on my own and I did, thanks to a lot of help from Mom.  I still have twinges of those feelings every now and then, but certainly not bad enough to be hospitalized again.  I told Mom that I finally learned my lesson last time I was in.  And I did.

The BPD keeps throwing me for a loop.  Just when I think I’ve finally conquered it, something happens and I open my big dumb mouth and insert my foot up to my hip.  Gotta work on the whole “think before you speak” thing.  Shooting from the hip is not always a good thing.

I shall endeavour to write more often now.  But probably not tomorrow – I’m going with my mom and my niece to the zoo in the morning before my psych appointment.  Enjoy the weekend!

 

new man

There’s a new man in my life – the car guy.  He owns a body shop and is really into cars.  And me.  We met on an online dating site and hit it off really well.  The only bad thing is that he lives about an hour from me – same town the kid was in.  So we’ll be doing a lot of driving to  make this work, but I think it’s doable.  I spent almost all day with him Sunday and then he came up for dinner last night.  Tonight he’s coming up for dinner and a movie.  Hopefully we’ll be able to spend Friday together since I have the day off for the holiday.

One of the really cool things about him is he was married to someone who has bipolar so he understands me a little better.  Apparently his ex-wife doesn’t manage hers very well though.  So far he’s been very in tune to my moods and emotions, which is nice.  I didn’t tell him about the BPD – figured there’s no sense in it.  I’m doing much better managing it these days so it shouldn’t be a problem.

I’m still going to the damn DBT classes and still don’t feel like I’m getting anything out of it.  Mom says she can tell a difference though, I’m less quick to fly off the handle when things don’t go exactly like I planned.  I guess I can see that.

And I finally cut the kid loose.  It was a lot easier than I thought it would be.  He called Sunday while I was on my date and I told him I was out and would call him later.  When I called him he asked me what I’d decided and I told him I’d decided to stick with the car guy.  He said, “so I guess that’s it, huh?”  And I said I guessed so.  I haven’t heard from him since.  Seriously it was a no brainer – the car guy has a job, a car, a place to live, much more potential for a future together.

The only potential downside is that the car guy also has 3 kids – one of which lives with him full time.  And we all know how I feel about kids.  But if it’s meant to be then I’ll get along with his kids and it’ll all work out.  I’m just not going to worry about it right now.

 

exit stage left

The kid is gone.  We ended it on Saturday.  Too much drama from both of us was the underlying cause, you could say.  He’s got no fucking clue what he’s doing with his life and I couldn’t handle the stress of never knowing what was going to happen next.  I hope he finds what he needs and gets his shit together before it’s too late and they lock him up for good.

So this morning I signed myself up for an online dating service.  I’ve already made successful contact with one guy who’s supposed to be calling me tonight.  We shall see what happens.  I don’t think I’m going to drop the bipolar/BPD bombshell on him right away – better to let that come later after we see if there’s any kind of connection.  No sense in dropping dynamite into the mix just yet.

I’m reading this really good book about BPD called “Sometimes I Act Crazy” by Jerold J. Kreisman and Hal Straus.  It’s an excellent book for anyone suffering from BPD or living with someone who has it.  My mom gave it to me to read yesterday when I was moping around the house lamenting the loss of the kid, and I haven’t really been able to put it down since.

I satisfy 8 of the 9 criteria for having BPD – that kind of scared me.  I guess I had always thought maybe I just had a mild case of it, but no, I’ve got it full blown!  I’m supposed to go to DBT class tonight – which is something the book highly recommends – but my heart just isn’t in it.  I didn’t do my diary card for last week and quite frankly I’m not going to do one.  I think they’re stupid.  Who gives a rat’s ass how suicidal I’ve been feeling?  The important thing is that I stayed safe, right?  Fuck it all anyway.

I talked to the ex the other day and he suggested that I just get some books about DBT, research it myself, and teach myself how to do it.  I’m starting to think that’s a mighty fine idea.  This whole class thing is just a joke.  And besides, after sitting through 45 minutes of therapy I’m expected to sit through another 70 minutes of that dreck.  My poor hip can’t take it!

Maybe I neglected to mention the problem with my hip.  I appear to have done something to piss off the big muscle that runs down the side of my upper thigh so that after sitting for awhile walking becomes torture.  I’ve seen the chiropractor about it twice now and have another appointment scheduled for Wednesday.  I don’t hold out much hope that it’s going to help though – it just seems to be getting worse and worse.  And I’ve even stopped wearing cheap sandals!

Anyway, life stinks right now.  I hope the call with the potential new guy goes well tonight.  I’ll let ya know tomorrow.

 

bring on the flames

Just got a call from the kid – he’s back in the program.  I told him I’m proud of him even if it means restrictive visits and spotty phone calls for the next month.  It’s a minimum 7 month program but things get less restrictive after the first 30 days.  I just hope he can stick it out this time.

I’ve been thinking about my own demons today since my earlier post.  I think my bipolar is pretty well under control now that my lithium levels are evening out.  The BPD is another story altogether.  I don’t think I’ve been doing the dreaded DBT long enough to really see any changes.  I certainly don’t feel any different yet.  About the only thing I’m feeling right now is worry about the kid.  Part of me is pissed that he couldn’t wait until Monday to go back so that at least we’d have had the weekend together.  The other part of me knows that the longer he stayed out of the program the harder it would be to go back and the more likely he’d be to fall back on old (BAD) habits.  But damn do I miss him.

I don’t think I’m necessarily having an episode right now, but I could certainly use a way to vent some frustration right about now.  Guess that’s why I’m writing, eh?  Anyway, life is not playing out the way I wanted it to right now.  I certainly didn’t expect to be 33 and living at home and having a boyfriend in rehab for the next 7 months.  Life just doesn’t seem fair these days, it’s too hard.  Too many decisions to make, pressure to make the “right” ones, too many things I want to be doing and can’t do, too little money in the bank account.

Bitch and moan, that’s all I seem to do anymore.

 

fuck the world

That is seriously how I feel right now.  Everyone can just go straight to hell and stay there.  Leave me alone and let me live my life.

Background…

Yesterday morning I had my therapy session.  These are turning more and more into the therapist lecturing me on this DBT bullshit and less and less about what’s going on with  me.  Fine, whatever.  Then I had a break between therapy and a “real” doctor’s appointment so I tried calling the ex-boyfriend to tell him to quit fucking bothering me.  Only I couldn’t do it.  Something about it felt too weird, too final – it’s like I enjoy stringing him along.  So there was that mess to deal with.  Had the DR appointment, everything there was fine.  Since I was on the south side of town I called up a friend and went and hung out with her for an hour or so.  That was cool, I haven’t had a friend I could just do that with in a long time.  Anyway, then I went to a massage session – the absolute highlight of the day.  I felt GREAT, I was all excited about the DBT thing, I went home and grabbed a late lunch and then back to the therapist’s office for class.

And then it hit me – this shit is not for me.  It was like they were lecturing to kindergarteners.  And this shit is supposed to last for at least a year!  I wanted to get up and leave about halfway through but I made myself stay.  But it triggered an episode that has lasted far longer than it should have.  But I am PISSED that these fucking people are treating me like some dumbass kid – I am not wired this way.

So of course I went home and blew up at my mom, which is always fun.  I proceeded to get the lecture from her about how I’ve got to take this fucking class to keep my job and how there’s nothing else that’ll help me and how she can’t wait until I turn 40 because by then I should have grown out of it.  What the fuck ever.  I don’t even give a shit anymore.  Kick me out, fire me, fuck me over – see if I give a fuck.

I’m tired of everyone and their dog telling me how I’m supposed to be living my life.  I’ve managed to get this far, I’ve gotta be doing something right.

Oh, and I AM going to see the kid this week during the week.  I can’t go tonight because of another class I’m taking (which does NOT SUCK), but I’m going to go on Thursday and again on Saturday.  I already took Friday off work so I can sleep in and recover.  Hopefully he’ll hear something today about where he’s going next and when that’ll happen.  This not knowing shit is getting real old real fast.

I’m gonna go see if I can find someone to yell at now I think.

 

utterly alone

I finally told my mom last night just how shitty I’ve been feeling these past few days.  It surprised her – so I guess that means I’ve been hiding it better than I had thought.

I talked to the kid last night before dinner and we both lamented the fact that I wasn’t coming to visit.  This whole being a grown up, responsibility bullshit is for the birds.  It took everything I had to tell him no I couldn’t come.  And then after I got off the phone I cried.  Cried because what I really needed was a hug from him and it’s still another whole day before I’ll get one.  Cried because of how little and lonely I felt, and still feel.  Cried because I realized I really do love him and don’t want to lose him.

I feel very much broken today.  I’ve been functioning alright, handled the meeting this morning just fine, played nice with my DR during our visit, but I don’t know that I’ve been totally straight with anyone.  I’m putting on my “game face” and pretending that everything is fine when really I’m a big wreck inside.  It’s like I’m trapped inside my own head with no one to talk to, except there’s always music playing, no matter what I do there’s always the music.  Never the same music, usually just whatever I’ve been listening to lately, but it’s always there.  Quite frankly it’s getting a little annoying.

But I digress…  Broken.  I’m back to feeling like there are pieces missing, not necessarily big pieces, but important ones.  Maybe this’ll all get better when I start the classes on Monday.  Maybe I’ll go ballistic and have an episode before then.  Who the fuck knows?  And quite frankly, right now at least, who the fuck cares?

 

help me let go

I’m feeling very puny and pathetic today, not a good combination, particularly for a Thursday.  On a Monday I could half way expect this, perhaps even a Tuesday.  But Thursday should be a strong day – just one more day of work until a break.  Too easy to just fuck off and not get anything done when  you feel this way.

So part of why I’m feeling the way I am is that I know I need to do some difficult things here in the next few days and I’m seriously not looking forward to any of them.  For starters, the kid called last night and practically begged me to come visit tonight, which I simply cannot do.  My sleep is so precious right now that during the week I am not willing to do ANYTHING to jeopardize it.  So anyway, I had to tell him no and that hurt because I really wanted to do it, still do.  But I went and scheduled myself an early morning meeting tomorrow that I just can’t miss.  I’ll get to see him on Saturday, but still, it sucks that I can’t see him tonight, too.  I cannot wait until they move him closer to home.

Speaking of the sleep thing, last night I zonked out by 7:30 AND I’d forgotten to take my bedtime meds.  Apparently I’m too stupid to remember these things on my own and since my mother was gone last night, no pills.  Remarkably I slept pretty well in spite of it.  But this sleep thing is some serious shit.  If I don’t get at least 8 hours, preferably 10, I am just about worthless the next day.  I don’t know if this is the bipolar or the BPD or just getting old, but it sucks ass.

The bipolar seems to be pretty well under control these days.  My moods have been pretty stable, just a few little dips now and again.  I still have a hard time concentrating and would much rather be sleeping or screwing around than working.  But I’m learning to fake it, so it’s all good.

I started doing diary cards for DBT yesterday.  It reminds me of when I first started seeing my current DR and she had me chart my moods.  I don’t actually start the classes until Monday, but my therapist wanted to get me started on some of the stuff a little early.  Apparently this is quite the committment – I’ll be doing this for at least the next 12 – 18  months.  That kind of scares me; it’s a helluva long time to commit to.  But I guess if it helps it’ll be worth it.  And my parents are going to pay for it, so that helps a lot.  As it is I spend close to $300 every month on DR/therapy visits and meds.  And that’s WITH insurance!

So what do I need help letting go of?  The old boyfriend.  I think I mentioned he called Tuesday night and asked me to call him back yesterday.  Well, I tried, but couldn’t find him.  I should have just told him when he called the other day to please leave me the hell alone, but I just can’t seem to do that.  With all the shit he pulled, all the money he sucked from me, all of the nasty things he said…  Why do I keep hanging on to him?  WHY?  Am I some kind of mental midget to keep thinking things will change for the better and he’ll come back to me?  I am well and truly fucked in the head over this one.

I love the kid, I just don’t feel the same passion with him yet.  I’m trying to chalk it up to not being able to spend any “real” time with him yet.  Maybe it’s a good thing – we should be good friends before sex becomes part of the equation, something I haven’t had happen in a very long time.  I can’t wait to get to that part though, I am wound tighter than a spring right now.

And I feel so utterly alone most of the time.  I mean, I have my family and a few close friends around, but I don’t feel like anyone really “gets” what I’m going through and I don’t know how to explain it to anyone anyway.  It’s like I’m screaming at the top of my lungs and no one is listening.  No, I’m not in any danger from myself right now, I’m just frustrated.  I feel like a hamster on a wheel – I keep running and running and I never get anywhere.

 

i can bleed as well as anyone

Yesterday I went back and read my whole blog, in reverse order of course.  That was enlightening.  I could see when I was in the midst of having a BPD episode, when I was just plain being stupid, and when the danger really set it.  Scary stuff if you ask me.

Today has been… interesting.  Last night I gave a friend a ride to class and ended up having to call my parents to come get me from her house afterwards because my Geodon had kicked in with full force and I was basically drunk off my ass.  Kind of scary really.  I think I talked to the kid while I was there, but I wouldn’t swear to it.  I know I talked to the boyfriend because he called while I was in the car with Mom on the way home.  All I remember of that was him asking me if I was drunk and telling me where he’s staying so I could call today.

And being the idiot that I am, I tried calling him just a little bit ago.  No answer, but that’s not too surprising as it’s only 7am where he’s at so I’m sure he’s just not awake yet.  But why am I calling him?  He’s hurt me so bad in the past, so very bad, why would I want to continue to talk to him?  Because there’s just something compelling about him, about the things he says to me, trying to win me back.  I guess I just like to have my ego stroked.

Things with the kid are going pretty good though.  We’re telling each other that we love each other now, which is super nice.  It just sucks only being able to see him once a week for two hours.  I’m hoping he hears something this week about getting moved to a treatment program closer to home so I can see him more often.  I’m really looking forward to when he gets out altogether and we can spend some real quality time together.  I need more than stolen kisses and hugs and dammit I need it NOW.

But I won’t go elsewhere to get my lovin’.  I’ve decided that I am a one man girl from now on.  He asks me about it sometimes, whether or not I’ve been faithful, saying he’d understand if I wasn’t.  But that’s just not fair to him, and besides, it’s not like I’ve got a ton of opportunities to take a tumble.

I told him one of the last times I visited him that there are precisely two men right now that I would consider sleeping with.  He’s obviously one of them, the other one is 1500 miles away and waiting for me to file for divorce.  So I hardly think he’s got anything to worry about.  Besides, I’ve already kind of had that discussion with the ex and he said in no uncertain terms that he would not, could not, take me back.  I’m just too unstable emotionally and he can’t take that anymore.  We’re still good friends and talk on the phone on a fairly regular basis, and I think we’ll probably always be good friends, but that’s all it’ll ever be from now on.  And I think I’m ok with that.

It amazes me to this day the extent to which I have managed to fuck up my life and yet continue to plod ever onward.  I wrecked two marriages, countless friendships and relationships, have had 2 very serious suicide attempts, and yet here I am.  I have to wonder what this says about me, and my purpose in life.

Part of my problem is I’m always focusing on trying to fix other people and their problems.  I very rarely stop and look at what’s going on with me and my problems – it’s just too hard.  That’s why the relationship with the boyfriend bombed so spectacularly – I thought I could fix him, when what I should have been doing was trying to fix me.  Hopefully the relationship with the kid will go better.  I’ve got no hidden agenda for fixing him – I’m letting him do that on his own.  And while he is, I’m working on me, or at least trying to.

I think for the first time in my life I’m really starting to take care of myself.  I don’t mean the basics like eating and bathing and all that stuff, I mean I’m really being vigilant about taking my meds, getting the sleep I need, taking classes, doing the work of fixing what’s broken.  And truth be told I feel weird about it.  I don’t like all of this attention focused on me.  I’d rather blend into the background.  But alas I can be a wallflower no more.

And I’ve kind of decided what my purpose is in life – to be the very best aunt I can to my baby niece and her new baby brother or sister when they arrive in December.  Cuz truth be told I am scared shitless that one of them will end up having mental issues like I do, and I don’t want them to suffer like I did for so long.  Hell, I don’t want to see them suffer at all.  That’s why I never had kids of my own – too risky to pass this on to them.  But I can be the bestest auntie in the world and be there for them when they need me, because there is no doubt in my mind that there will come a day when they will need me and I’ve got to be strong enough to be there.