Category Archives: Illness

The Sick Cycle

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12-1-10     1:29pm

I am so cranky today. I want to be outside but I’m supposed to watch the soup so it doesn’t boil over. Would it not make more sense to just put less soup in the pot? (SIGH)

I feel bitter today. I’m a few days into a sick cycle. I will feel confused and pissy for several days, have major mood swings and be more tired than I should be. I will then have unexplained agitation with lots of movement & bad headaches, and small windows of euphoria. I will then be extremely tired for several days and then have a somewhat normal productive few days or week before it starts again. I will think I’m losing my mind and have urges to die. I will hate everyone and everything and not know why. I will feel desperately alone but not want to be touched or around people. I will be overwhelmed. Life will be more than I can handle. And I will be exhausted.

© Michelle Routhieaux 2010

I am scared

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From my journal tonight. The dialogue is between me and me and me.

11-18-10     2:12am

I keep hearing the chorus of “You are More” by Tenth Avenue North. I feel the urge to say I’m sorry over and over again. Please. Just please don’t leave me.

I’m cold. I’m lying in bed. Today was the ninth anniversary of my dad’s death. It wasn’t much different than any other day. I saw my therapist, had dinner with Mom, took a nap and went online. I recall going to choir but that wasn’t today. I wanted to go to the cemetery but we didn’t. It closes at sunset.

I feel so angry, and sad. Helpless. Watching an illness is good training in codependence. It compeletely control you and is out of your control.

I’ve been napping in the early evening. I haven’t felt good and I have nothing to do. I can’t handle working on the endless tasks for the group. I need the group to leave me alone. To give me some space. You don’t own me. I don’t appreciate waking up to calls from strangers, urgent FB chat crisis pings, or 75 emails in a week about stupid shit I don’t care about from 1 person. LEAVE ME ALONE. (sigh) I need some respite.

I feel guilty tonight for telling a friend I wish her learning curve was steeper. It’s true but it’s selfish. It has to do with fly paper – a model of my feelings. Whatever she feels I feel. I can’t control it. If she’s happy, I feel joy. If she’s sad, I feel pain. When she hurts, I hurt. It’s like voodoo magic. Whatever’s there sticks. I should be angry at myself for not being able to control this phenomenon, but that reminds me I have no power and is scary. And I’m already scared enough. So I hope these people who affect me avoid pain. Because I feel that pain. You know? There’s no fix. But avoiding pain is impossible. I don’t understand.

I’ve been thinking about independence.
___

I am so scared. I can’t run away. I can’t get away from me. But I can’t stay here with me either. I will kill her, put her out of her misery.

Who is she?

She is that girl, that little girl playing and crying for her daddy. The one who wishes on dandelions and smiles and swings.

I love her.

Yes. She is beautiful.

Why does she have to die?
Why are you going to kill her?

Because she won’t stop crying. She is hurt and there’s no way to fix her and I can no longer handle her crying. I can’t take it.

Girl: I’m scared. Daddy, please. Make it go away. Please, Daddy. Why aren’t you listening? Why can’t you help me?

How often do you see her?

Every day. She keeps tugging at my shirt. Play with me. Hold me. Comfort me. Please, just make it go away.

I can’t take it. She’s driving me insane.

Do you love her?

Yes! That’s why I have to kill her. She deserves peace and so do I.

What would bring you peace?

If she wasn’t sick.

SHUT UP! I’m not talking to you.

If she wasn’t sick. And she wasn’t stuck in time. And if people understood that she’s only 7.

She is the hope. Why kill the hope?

So the rest of me can die in peace.

Do you really want to die?

No. I want to be free. I want to heal her with a magic hug. I want to never feel alone again. To never feel helpless. To be taken care of.

Can you give her comfort?

I wish.

Girl: Please, Daddy. Don’t leave me. I don’t understand. Please. Somebody help me. Get off the phone and pay attention. This teddy bear can’t cure me.

She sounds distressed.

She’s almost always distressed. Except when she’s exploring or brainstorming. Then she’s happy. Or spending time with people she loves. She’s like a cat. She needs comfort.

Does she get it?

Sometimes. Not enough to survive. I give her drugs to numb the pain. But they can’t fix her. She’s going to die.

She is broken.

Yes. She is broken. And she is all that I have. And when she dies I die. I want to hold her in my arms and make it better but I can’t. But she still keeps tugging on my shirt.

Where is my daddy? Why doesn’t he love me?
How do angels fly?
Can I have an ice cream? …
Hello?

I can’t save her. (deep breath) I can’t.

But you can’t kill her either.

I know. I love her too much. She’s all I’ve got.

Do unicorns fly?
Can I get one as a pet?

She still believes, you know. In hope and God and love and faith. And unicorns. She loves everything good and beautiful, always stops to smell the flowers. She believes in Santa and knows that people are good.

And you don’t.

I try… I try.
It’s like trying to believe you are blessed as you watch your house burn to the ground.
I am blessed. I just can’t.

She is your bunk mate.

She is my best friend.

A dilemma.

Quite. (long pause)
I feel rage and I am scared.
I am scared.
I am scared.

© Michelle Routhieaux 2010

Saved

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11-5-10                10:37pm

I found myself in that place a few weeks ago. That place where I could not go on. My agitation was unmanageable. I could not fix it or stop it or understand why. I wasn’t running from a stressor or event. I could no longer stand my existence.

And I realized late one night that this was the mindset in which I should take myself to the hospital. I was losing control and the danger level was too high. But in that moment I realized I don’t want to be saved. I also realized there was no one I could call, no one who could listen and just be with me in that feeling. No one. I had to do something so I doubled my Seroquel and thankfully (miraculously) felt much better the next day. And when I woke up I finished the thought. It’s not that I don’t want to be saved. I do. I want to be saved from what’s ravaging my body & mind, but not from the thing that’s saving me from the thing no one can save me from. That I don’t want.

It’s been a few weeks. The mindbending agitation has not returned. I feel calmer – more confused. More movements. More colors and creativity. Dissociation. I need to dance and paint the sky. I don’t remember my problems, which is both good and bad. The thing I notice is that I am lonely. And it makes me think a lot about death.

The need in me for comfort is so high that I will do almost anything. I made a list this week of why I’m not killing myself and I was proud of myself for realizing that I don’t actually want to die. I want the pain to stop. I want to be held. I did not feel safe Monday night so instead of going home I slept over with a guy I barely know. It saved my life. He doesn’t know that. Doesn’t need to.

I’m quiet tonight in the music and the chaos. Too much stimulation. I need quiet. I need love. Saved.

© Michelle Routhieaux 2010

What a Friday Night

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10-24-10              2am

On Friday I took the trolley to my usual spot for music. The music was great but my experience was marred by pesky unrealities to most of the world. I knew at the first thought that something was wrong. It was a good thought though. This is my journal’s account from then until now.

10-22-10              7:04pm

Automatic Thought: I am a miracle. :)

I’m riding the trolley to see -. Got my mind on autopilot with my ipod. Good music. Good weather. I feel calm, and happy. I think content is a better word. A pleasant calm, contentness. I was really mad at Ken today, but in this moment I just feel good.

Today I woke up from the strangest dream. It was scary and disturbing. I want to write but I need to just listen. I’m off.

7:13pm

I feel bulletproof & transparent, like if I put my arms out I could rise up and fly, hover. Impenetrable. Safe. Unfazed. Nothing can touch me.

8:05pm

Mind still floating.
Wide eyes.
Heart strong but not fast.
Body – nervous. Mind – mostly calm.

8:17pm

Just listened to S- & C- talk in the bathroom. Nothing changed. I still feel invisible here – not translucent but not part of them. J- is sufficiently obsessed with me.

*The Very Thought of You
– black fountain ink pens and purple
– ice skaters dancing and painting the sky

9:02pm

Cold sweat
Slightly confused
My insides are tense but my outsides are not.
My hair is bugging me on my neck.
Just ordered fries and pickles.

10:35pm

My thighs hurt – it’s like they’re constantly contracted.
It hurts my face to smile.

10:51pm

Insides tight.
Barely breathing.

11:51pm

General sense of impending doom.
Hard to stay conscious.
Hard to stay upright.
Exhausted
Shaky/trembling
Must consciously thinking about breathing
Cold sweat
Headache
Tongue out randomly
Nose twitching
Peeing all night.
Need to get home NOW.

(Thinking at the music – Just make it stop.)

Predict: Zap storm, many hours sleep, and/or migraine.

Ipod and coat on trolley home.

12:06am (on the trolley)

It’s like freefalling backwards into a Wonderland of memories.

Exhausted but don’t want to blink.
Feeling hot.
Want to take all my clothes off.
Neck clicking again – veins on right

12:15am

Want to walk & walk & walk.
And DANCE.

Safe – I don’t feel safe. And I don’t know what’s going on. I wish I was with someone. I just want to feel safe.

12:35am

Tired
Sad
Pain over right eye
Want to sit in warm water to relax
Lower back tight
So tired.

12:45am

Mini-face storm
Eyes squeeze shut

12:49am

Exhausted

12:53am

Freezing cold – shivering
Trembling
Nose running

1:01am

Rocking back and forth
Cookie & Milk
Eyes closed lightly – too much light

10-23-10              1:31pm

Just woke up. Still feel zoned out and tired but my head doesn’t hurt.

9:48pm

Residual effects:

Some movements – mostly facial, some large jerks
Trouble swallowing
Olfactory hallucinations
Confusion
Cravings
Tired
Headache is back

I went shopping/returning at the mall today. I feel much better than yesterday but I’m still not feeling normal or baseline again.

(sigh) What a Friday night.

© Michelle Routhieaux 2010

Cold Sweat

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10-16-10              11:10pm

Cold sweat. I feel overwhelmed. I don’t want to be alone, but I don’t want to be around people. I am exhausted but I don’t want to sleep. When my body won’t move, my mind won’t stop. When my mind won’t think, my body can’t rest. It’s cold and I’m sweating. The music in my head I don’t always understand and it’s all a blur. What is today?

Today, after sleeping for an hour, I worked a resource fair at a walk. I walked the 5K, talked to a girl who used to be my best friend and was reminded how much I miss her. When I am hungry I don’t know what to eat. When I am starving and wait a moment I forget. And when I get food, I don’t want to eat it. Or I can’t slow my eating enough to breathe.

The house is quiet tonight. I’ve been looking through pictures. Not the ones I wanted to be looking through. There are so many rolls that don’t matter. I really don’t give a shit about the 12,000 dance conventions I went to and every dance and every scene of every nutcracker. They don’t matter. They’re not my life. It is the people I remember. And it does feel good to remember. I forget so much these days that remembering exactly what happened on a particular day 15 years ago feels good. I left my purse at Chili’s the other night. I usually remember my purse and forget the food, but not this time. And I had no idea I’d left it until I tried to spend money. And it didn’t faze me. I didn’t really care.

Cold sweat. Trapped in my own body, my mind. Looking for pictures of me and my dad. I want to see him. I want to line up the progression, to watch it. My knowledge and experiences change the perspective so much. He can’t stay hidden. I don’t want him to be a secret anymore. He doesn’t even have a headstone. For that I feel ashamed. A bad daughter… In reality, just a daughter with no money. (deep breath)

I can’t keep running from myself. I am tired. So tired. 24/7 distraction is not sustainable. My therapist assumed my agitation is mostly from the whole mystery disease thing, but it’s not. When I wake up in the morning I’m not calm. I get these waves of stress/anxiety/agitation that aren’t connected to anything. I wasn’t particularly upset or triggered yesterday and I got so agitated that I was literally walking in circles in my backyard for 15 minutes. I don’t understand. (breath) I’m not sure I want to. I just want it to go away.

—

My therapist also asked what would happen if my symptoms never got any better or worse, stayed the same as they are now, and I lived to be 100. I think that would be the worst of all. For now, cold sweat.

© Michelle Routhieaux 2010

Too Much Muchness

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10-13-10              11:15pm

I haven’t written in my journal in 10 days. I knew it’d been awhile. I’m so tired.

I went to see my psychiatrist today. He didn’t say much. There isn’t much to say. I am so stressed, so overwhelmed. If my manageable stress level is a 10, I’m at a 25. I just kept thinking today, “I can’t do this.” I can and I am but I don’t want to.

I don’t remember the last time we talked but I went to San Francisco to visit a guy I met in a bar two weeks earlier. Crazy? Yes. Impulsive? Yes. Much needed break from my life that I don’t regret one bit? Yes. I need more times in my life like my weekend with Matthew. I wanted to blog all about it but my mind’s all a jumble. It was a mostly stress-free time away from this chaos. I am grateful.

I don’t remember much of this week. I’m having a lot of memory problems. But between Friday and Sunday I volunteered 34 hours at events and slept 31. My body was and is very angry. Two day psych conference, awards luncheon, gospel event and Little Italy Festa.

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At the psych conference I took a nap by the pool. Just couldn’t stay awake. I really wish I was psychotic. I need to get away. The week before SF I was shopping every day. Rapid-cycling hypomania. Serious retail therapy. It’s all on cards but for some reason I don’t have enough money this month. And I don’t know why. I just know it’s one of my top triggers. I have to get away.

Just as I was leaving for group on Monday my neurologist called me and did just what I asked him NOT to do. He gave me the results of the box test I’ve been waiting for – autosomal dominant ataxia panel. He couldn’t have said more in person but I would have preferred it.

He said the results were not positive or negative. What? Do I have SCA 1-17? No. Do I have DRPLA? No. Do I have something else? Yes. What? (big sigh) A 9 base pair deletion, a “mutation of unknown clinical significance.” What? (deep breath) He was confused by the report and will mail it to me. In plain English: I was right. I have a genetic disorder in the same movement disorders realm. HOWEVER, the disorder I have is special. It is uniquely mine (and probably my dad’s.) It has yet to be named or identified. I have never been more angry not to have an identifiable deadly disorder. (My fingers are tingling.)

I wanted to talk about it in group but there wasn’t time. M- said we’ll just start a foundation and have a telethon. Not helpful. My bff said at least now I have proof it’s not just in my head. And while that’s true, it’s little consolation. I don’t need proof that what I’m experiencing is real. I’m living it!

When I thought I had DRPLA I was pissed that the specialists are in Japan. But there ARE specialists. There are people who get it. Now it’s just me. Really. And my mom’s denial is in full swing. She’s trying to convince me that maybe those genes just code for what I’ve already been diagnosed with. (sigh) I’ve never felt more alone.

When he told me I wanted to scream or cry but couldn’t. I still do. It took Xanax, 2 scoops of ice cream, group and a steak just to get through the night. I feel like the innermost layer of my skin has decided to secede from the union and is attempting to escape. It’s like my body is exploding. I can’t breathe or I’m barely breathing. I can’t get away from myself and this plus the stress of group and choir and the street team and money problems is killing me.

(crying)

I just need to go somewhere quiet and scream and cry and think. And walk. I don’t understand. I am so sad, and so scared. I thought maybe this time I’d get an answer – one that would help me out… I wish my dad was here.

—

I tried to get a pedicure this week but my anxiety was too high. I just want to get away. Mom asked why I’m crying. “Because my life sucks and I can’t fix it.” (“Unanswered Prayers” by Garth Brooks) My whole life doesn’t suck. But right now does. I don’t need problem-solving or grand ideas or positive spins. I just need to feel this. It’s big. And it’s real. Then I need to find a genetics dept that will take me on as a case study.

There’s no one to go to to ask if they’re having this too, how they coped, what happens next. No group. No doctor who understands. I told my mom, “I bet ya didn’t know you were sitting on such a mine of research data.” (deep breath… my fingers are still tingling)

I need some money to fall from the sky so I can work on some projects for me to distract. This is too much.

-M

© Michelle Routhieaux 2010

Illness. It’s bigger than the horses.

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9-19-10                2:45am

Illness. It’s bigger than the horses. I’ve been hearing “Wild Horses.” The chorus plays over and over in my head. “Wild horses, couldn’t drag me away. Wild horses, couldn’t drag me away.” Maybe not, but illness is bigger than the horses.

Today I am sick. It’s almost 3am and I’ve been awake altogether for less than 4 hours. I really wanted to go out tonight but I couldn’t. And it made me so angry. Conscious enough to know I can’t go but sick enough to be able to do nothing about it. “For All We Know” lulled me back to sleep and woke me up.

For all we know, right? It’s why I went out with Matthew this week and it’s why I see so much music. And why I’m terrified. Because I know. I am acutely aware of how precious life is. And God keeps reminding me that it’s not in my control.

I should have known a sick day was coming. I’m kinda glad I didn’t. I had fun. I went to hear music 3 days in a row this week. Last night I was riddled with zaps and freezing cold and anxious and feel asleep on the trolley, and in the car, and while waiting for food. And today I just couldn’t wake up. Really bad headache. Extreme exhaustion. And anger at the situation.

Wild horses couldn’t drag me away from the music. But illness is bigger than the horses. This invisible force I have little control of. I feel like crying but I’m just too tired.

Headache’s coming back. I’m writing by flashlight in my dark room.

(breathing…)

I’m grateful for Matthew and my teddy bear.

Love,

Michelle

© Michelle Routhieaux 2010