I Want to Be Well

med box-big

My daily meds

1/16/14     10:54am

I want to be well.
I want to be well.

I just left physical therapy. I had tachycardia during some of the exercises. 10 step-downs shouldn’t send my heart rate to 140, making me shaky, dizzy & weak. I told the guy working with me. He asked if I have a heart condition. Yes, but it’s not properly worked up or treated.

I want to be well. I want to dance. Hell, I want to be able to walk up stairs to DBT without a problem. I’m tired of being sick. I take so many pills and am so limited. People look from the outside and say I’m so functional and assume I’m doing well. THIS IS NOT MY LIFE.

I take 27 pills a day, plus any of my needed 10 PRN options. I have 6 support groups, 4 therapy groups, 2 pdoc appts, 2 other doc appts, and 8 therapy sessions a month. Right now I also have 2 PT appts/week. I understand these things are keeping me going, but they’re not my life. I help people and go to church and sing in 2 choirs. I still want to die. I’m working the PERT Academy in 2 hours. No one will know. And since Angela’s not there there will be no refuge. It’s all a lie. Smile and move on. Somehow, I’m still here.

I wasn’t supposed to live. Don’t you understand?

© Michelle Routhieaux 2014

Advertisements

27

SAMSUNG5-3-13     10:12am

27. Mom thinks it’s the magic number, the number when everything clicked. Really, it’s just a number. Although I hear ____ say, “27. Now that was a good year.”

I turned 27 March of this year. It was not a remarkable day – appointment, lunch with Mom, major crash, terrible pain, OCD group. But my mom says something around then changed. She attributes all my recent growth to a number. Figures. She’s been in Texas. Today I feel great. A little dizzy, awake. Change is hard work.

A month or so before my birthday I spent 3 weeks in the hospital (see “Even Dark Clouds Pass.”) When I got out I was still going through it. The time since then has been fireworks. For the first time in years I started an antidepressant. I added structure & a complex schedule. I updated my day list and started using it. It is a list of things I do every day in the morning and evening that I keep in a page protector and check off with a dry erase marker. And I started BrainPaint, which I believe to be the key to my success.

BrainPaint. A simple notion. Painting with your brain. Ha ha! Not so fast, my friend. I paint with my brain indeed. BrainPaint is automated neurofeedback. EEG leads tell the computer what my brain is doing and the computer makes real-time fractals (pictures) and music to guide my brain into the wave pattern it wants. Forget training a dragon. Train your brain!

I’m doing BrainPaint at Healthy Within under Dr. Divya Kakaiya. She determined what areas we could work on. I’m almost through my treatment. I don’t want to stop. I go 3 times a week. I consider it an outpatient program even though it’s not. It’s not all peaches & cream, but BrainPaint saved my life.

I feel tired of writing.

I have 3 pages of what’s changed since BrainPaint that I may choose to share here later. Most notably, I don’t want to die every day anymore. I’m sleeping, brushing my teeth (yay!), and can tolerate being at home. Kinda crazy. I even got my permit. I am blessed that my mom was in Texas for the past month. Without limits or rules or judgement or simply the energy of another person I’ve been able to settle into life, to blossom. I’ve been repotted.

27. I like it.

© Michelle Routhieaux 2013

Benefits of Pain

4/10/13     9:35am

  • Forces me to slow down, to be mindful of each thing I do
  • Refocuses my attention on God
  • Shows me what is and isn’t important
  • Humbles me
  • Makes me greatly appreciate the little things when they come back
  • Gives me permission to take care of ME
  • Allows me a space to heal
  • Reminds me this is His plan, not mine
  • Increases my empathy towards others
  • Purifies me
  • Reminds me of all my blessings
  • Shows me how frail I really am
  • Causes me to seek help
  • Causes me to want to apologize & forgive
  • Breaks down my walls/barriers/facade
  • Lets me cry
  • Takes my focus off of thoughts & feelings
  • Gives me new perspectives

I am thankful for pain.

© Michelle Routhieaux 2013

I want to fall in

7-2-12     8:04pm

I am SO tired. I skipped group tonight, which I rarely do. My body is rebelling. I don’t blame it.

I did some work for a friend today, helped with some organizing and grounding. I knew about halfway through I needed to stop but I stuck it out. I wrapped up nicely and went on my merry way. But I was barely breathing and in full body freakout mode and when I got to my other friend’s house (Mj) my legs gave up on walking right and then came the dizziness and head pain. I am so tired that it’s hard to stay upright, yet I’m not sleepy. I can’t explain it. Mj understands. I really enjoyed staying with her, having some moments to myself.

I find myself questioning if doing this work (helping) is worth it. Is helping and getting out of my house and my head and being somewhat social worth the toll it takes on mind and body? My friend doesn’t know what I’m going through and it’s hard for me to explain. Hard to explain why 4 hours of help causes massive body shutdown. Why I can organize and create systems but not eat. Why I LOOK fine when I’m really not. And it’s harder for me to say, “Hey, I’m not ok.” (tears) I want to be ok. I REALLY want to be ok. I don’t want to be a secret and I don’t want to be a lie. And I don’t want to feel ashamed… But I do. So I just press through it and deal with the fallout. I want to fall in.

I went walking with Mj and her dog a few times. It felt really good. I just got home to my mom on the phone with her boyfriend and Zoe. I don’t want to be here. (deep breath and tears) I can’t make it go away.

I’m so tired. My face burns and I’m tired.

© Michelle Routhieaux 2012

Sparkle Fun Toothpaste

4-25-12     1:34pm

Can I just say I love Crest Sparkle Fun toothpaste? Alongside the adventure of trying to learn to cook, I have also embarked on trying to take care of my teeth.

Many of you know that me and oral hygiene don’t exactly mix. And by don’t exactly I mean almost never. I always avoided brushing my teeth growing up. I’d lie to my mom that I did. Aside from a dental “check-up” before kindergarten I never saw a dentist either. When I was 18 I got all my cavities taken care of and got braces. They were helpful not only in straightening my teeth but reminding me to take care of them. But when they came off I stopped working at it. For a long while brushing my teeth made me throw up so I just didn’t do it. Then I got sicker and for the past few years I’ve been afraid to brush my teeth. I’m not sure why.

Anyway, I saw a new dentist this week and got a plan for how to fix up my teeth. Not sure where I’ll get the money but I want to do it. I do genuinely care about my food crunchers. I do love food ya know. Yesterday my doctor was like, “Once you get all this work done, start brushing your teeth.” It would be so much easier if they had pot roast flavored toothpaste.

So when I was at Walmart yesterday buying the skillet I don’t know how to use I stopped in the sample-size aisle and picked up a few mini-toothpastes to see if I could find one I was willing to endure every day. I hate toothpaste, I hate brushing my teeth, and I hate the taste of mint and strong cinnamon. I happened to pick up a kids travel pack with a tiny Sparkle Fun toothpaste and a small monkey toothbrush that could only be more awesome if it shook like a rattle when I brushed. I LOVE it. It has glitter in it and tastes like bubble gum. I’m sure I’ve used it before but it wasn’t called Sparkle Fun, although it is quite sparkly and fun.

I’m proud of myself and really grateful for this thing that is fun and does not taste like mint and makes me not scared of brushing my teeth. You should try it. Might change your life. ;)

© Michelle Routhieaux 2012

It’s the Music… (and other stuff)

6-10-10                 2:35am

Sorry I haven’t been writing. I just haven’t had the energy. I had a good week and now it’s time to work again, on illness that is, or with it. I’ve been inundated with symptoms. Another day of no moving or talking, constant exhaustion, weakness. In the past few days the large movements have come back. Today I was a buzz of zaps and weakness and sticking my tongue out all the time. In between I managed to do things. I went to therapy, then to Quizno’s (couldn’t breathe), then to the beach. I lasted about 20 minutes and climbed the stairs. Quite a feat. Went to the bay to see the big ships with Mom. I walked all over Target and made it almost to the checkout at Albertson’s before almost collapsing. That was nice. Zapping all over. Crashed in the car. Some more movements tonight and now I’m okay again, minus the frequent unwarranted blinking, grimacing and sticking out my tongue. I wrote on FB tonight:

In between God’s version of invisible lightning dances and frog imitations, today I saw Jim, went to the beach, looked at that big old ship that’s here from Portugal and went to Target and Albertson’s. Long but very good day. Tomorrow’s Mom’s birthday. Hopefully it will go well.

My primary goal, after staying alive, right now is to have fun. Followed by being with the people I love and staying away from the people who bug me. On any given day, just one is enough. But two or more is great. I told Jim today it was frustrating thinking I was going to die Saturday night (due to fucked up vital signs and the inability to breathe) because I actually like my life right now. He said he’d never heard me say that before. That was powerful. I’ve been with him for a year. And I don’t think I’ve felt like this before. I like my life when I’m doing things I love. I don’t WANT to die right now. And that’s a good thing.

I said that I’m trying to make the best of it, of being sick. I don’t know what it is and even if I did or when I do there’s probably not much I can do about it. He said, “It doesn’t sound like there is a best.” But he’s wrong. There is. It’s the music.

My mom doesn’t understand why I go out when I can barely walk or breathe. I keep trying to explain it to her. I don’t need more sleep. I could be sick anywhere. It doesn’t matter if it’s here at home or at a restaurant or concert. But I’m so much happier when I’m sick to live music than when I’m just sick at home. The music is healing. Just for a moment, nothing else matters. I can just be free. I can’t dance right now. But I can still hear the music. And trust me, I need it.

I’ve been working on this project for a few days for a friend. I’ll post all about it when I’m done. It’s meant to provide comfort, but it’s providing comfort to me. We talked about codependence today and giving versus receiving. Jim asked if the drama is really worth it. And right now, I think it is. Cuz if I can’t have what it is that I need right now, having something is better than nothing. My friend was telling me about the 5 Love Languages last week and I took the quiz on the website. In descending order, mine are: Quality Time, Words of Affirmation, Physical Touch, Receiving Gifts, and Acts of Service. I think it’s kind of a pecking order because if I can’t get quality time or words or touch I give gifts or do service. I need to give. But I need to receive as well.

I was listening to Celine Dion and crying last night with the main part of the project I’m working on. There is this song of hers that always gets me. “I Want You to Need Me.”  (whooooooooooo…) Just listened again. Makes it hard to breathe. Sometimes I just want to scream, “What do you want from me?! Please, whatever it is, just tell me. Let me give you something or do something for you so you’ll spend time with me.” But I’ve realized the people I want to need me, they don’t want anything from me. There is nothing I can give to get the time that I need. And they don’t have that time to give. I’m just along for the ride. But until I find or get something, it’s a ride. The music. It helps.

M- posted today “Make a Wish!” and I held my breath in anticipation and excitement, then paused. What should I wish? I was torn between two things – my friends in pain being happy or my health. I wondered if not putting them first made me selfish or if I could find a second thing to wish on, but I settled for wishing for them first AND me. I’m getting there.

Tomorrow is Mom’s birthday. The gift I got her requires energy, which I don’t have, so I hope she okay for postponing it. Thanks for reading and sharing your time.

-Michelle

PS – I attempted to read a book today. Remind me not to do that again for awhile.

© Michelle Routhieaux 2010

My Hypothalamus Hates Me

5-30-10                 1:22am

Not being able to regulate my body temperature is driving me insane. Like tonight my body is very hot and I can’t stand anything touching me. Not even my bracelet or hair clip. Yet I have goosebumps and feel cold. And hot. The other day when I walked a mile I was exhausted. It was too much for me. I should have been hot. I couldn’t breathe but I was freezing to the touch. My coldness astounded me. And sometimes parts of me are cold while others are hot, for no apparent reason. I get fever blisters from my lips being so hot. My hypothalamus hates me.

The hypothalamus doesn’t just affect temperature though. It also controls hunger, thirst, memory, blood pressure, pupil dilation, circadian rhythms, heart rate, bladder contraction, sweating, hormones. It’s the Grand Central Station of the brain. The fact that mine hates me could explain my cravings, funky heart rate, weird memory, odd pupils, vampire hours and a bunch of other things.

I’m going to name my hypothalamus Happy. Happy the Hyper/Hypo Hypothalamus. He’s bipolar. I love him anyway. But I wish he would settle down. So fickle.

I wish I had a name for this. Happy doesn’t always make me so happy.

© Michelle Routhieaux 2010

Health & Dreams

5-23-10                 4:28pm

I feel so overwhelmed today. The tension is so high I have to breathe through my mouth or my face just might explode. My cheek bones hurt.

I caught the early bus, the one that takes twice as long to the trolley. I can’t stand it in my house or around my mom. She drives me nuts. I don’t know when she forgot how to have fun or started believing fun is bad. But no matter what I do it’s wrong to her, makes her mad. (Our bus driver doesn’t know where she’s going.)

I knew today would be difficult because the last two were wonderful. I had two healthy days. And in those days I did a ton of stuff. I went to a ROCO meeting, toured Edgemoor, saw my neuro, ate Chinese food twice, sang at the gospel festival, went out to dinner, attended a suicide conference, got my hair cut, went to Body Rock and enjoyed The Shout House. I walked farther than I usually can. My body didn’t hurt. I lifted things, felt happy, had energy. I even took the stairs at the Civic several times. I felt normal. I felt happy.

Going to Body Rock last night was an exposure. I’ll admit I cried through the first number and wanted to leave but I’m glad that I stayed. I had a great time. I’m proud of myself. I did something new, out of my comfort zone, sat through the anxiety and enjoyed it. And I went to The Shout House and sang. It was great. I hadn’t been there since my 21st birthday. On the way home I was gifted a horrible headache that made it hard to breathe, but the night was worth it. So were the days.

I woke up today feeling calm and happy. Warm sun feels good now on my back. I feel trapped. A good friend posted on FB last night about giving up her dream. I want to help her, to listen, but I can’t if she won’t let me. I need that magic dress. Not being able to do anything hurts. My body feels heavy. I tingle. I just can’t get it out of me. If I could tell her anything it would be not to give up her dream. She might not get it back.

As I watched Body Rock I needed to dance, and having two mostly symptom-free days I let my mind wander, hope. I thought about dancing again, taking classes, performing, watching shows. All the stuff that I love. It seemed possible. Just maybe I could have that again. It didn’t escape me that 2 days is 2 days, but it felt good just to dream.

When I gave up performing I didn’t think it would be forever. I don’t mean singing in a choir. I mean being a star. I didn’t think that I couldn’t have it back. That I would see myself someday singing at the bar of The Shout House just to sing. I didn’t see that. It’s kind of like giving your child voluntarily to the foster care system and just hoping they treat it well. It will never be the same. They say going back to school is harder the longer you’re out. It’s nothing compared to losing or hiding or pausing a dream. Because the dream never goes away. It haunts me. I’m different now, but it’s still the same dream.

I keep thinking of the Rainer Maria Rilke wisdom from “Letters to a Young Poet” that if when you wake up in the morning you can think of nothing but writing then you’re a writer. Or of dancing you’re a dancer, etc. When I don’t do what I am I’m not happy. And when I’m not happy, I’m not me.

© Michelle Routhieaux 2010