Medication Frustration

“I’m thinking of beginning the reduction again”.

“I think stay with 200mg for the time being, because you are so physically unwell, it just doesn’t seem a good time”. That’s my therapist’s very reasonable advice.

I swallow it and we move on. But I’m frwhite-pills-and-bottle-220ustrated. I don’t want to just stay here for the time being, because how long is that? The time being could be 3 months, or 6 months, or 2 years or more. I could be unwell for the rest of my life (not likely but not impossible). There might never be a good time to do this. By the time I feel well enough, I might be 30 years old and just starting my career. In three years, I could be dead. Again, not that likely, but definitely not impossible. But I suppose if I meet an untimely fate it won’t matter whether I was on Quetiapine or not. It won’t make the obituary anyway.

Bipolar Disorder is definitely a challenge, anyone who has it will agree. Some people say it’s the worst thing that happened to them, and I don’t doubt that for a second. But this autoimmune extravaganza is the worst thing that’s ever happened to me. In my journal I wrote:

Every day is a burden. A heavy weight on my shoulders, even if it’s just the fact I need to wash my hair. I’m so tired of being tired. I’m so sick of waking up in the morning and being exhausted and having to get up anyway and thinking “oh it’s yet another day of the same old shit”. I’m so tired of going to bed at night not wanting to go to sleep because then I will have to wake up to yet another day with little improvement and little to look forward to.

Every day is the same. I wake up with a brief moment of respite and I think “today will be better” and then I get up. I eat. I rest. I do my walk. I do my stretching. Then I rest some more. I barely do anything in between. I might read, or watch TV. Maybe a few hours for my job. I’ve barely been writing because the fatigue drains me of creativity. I want to write but I don’t do it. Because I feel so tired. Because I have no motivation. Because I can’t think of anything to say or do and when I do it never seems to come out right. And now the pain, the pain is back and it reaches into every corner of my body and it aches, all over, everywhere. Until just being is uncomfortable. Even when I’m more accepting of this never-ending situation, it’s still like ground hog day. The same routine beckons me. The same uncomfortable body and the same four walls surround me.

I don’t feel like myself. I feel nothing like myself physically. Mentally, I feel like my depressed self, my angry self, my bitter and twisted self. My mind doesn’t feel normal. It doesn’t feel like my own. It just feels like it isn’t even there. My body feels like a prison. Like a dark, sealed coffin that I’m trying to get out of, and I’m banging on the lid and trying to break out or get someone to hear me. But no one does. There is no one to help, no one to get me out of here. No one is coming. And I’m so weak I can’t get out of it, I can’t lift the lid and live my life. There is nothing anyone seems to be able to do. And it’s frustrating because all I want is something to make me feel better, to get me out of here so I can get away from this body and the pain and the weakness and the overwhelming tiredness that dogs me every single day.  – 26 July 2013

It sounds like depression, but it isn’t. This is the reality of debilitating fatigue. This is the reality of Lupus. My mood changes as my physical health does. On days like today, my health improves a bit and I feel happier. I can talk, I can smile, I can laugh. I find myself questioning whether it could be hypomania because I am so unaccustomed to feeling anything but fatigued.

I’m so frustrated because I want to find a drug for this disease that will bring me back to life. A drug that will make me well, so I can go back to being a relatively normal person who works from 8.30am-5pm and complains when the printer at work runs out of ink. I want to be able to walk for more than 15 minutes. I want to do a full length yoga class. I want to run. Hell, I want to stay out all night with my friends and get drunk and be normal. Totally, completely normal.

I’m frustrated because I want off this Quetiapine. Because I worry that it triggered off this autoimmune nightmare. Because I want to have a baby one day, no matter how impossible that seems right now, and I can’t be on Quetiapine when I do it. Because I want to see if I can cope without psychiatric medication. I want to know if it’s possible. I want to know who I am, what I really look and feel like, without drugs to cloud that vision.

But it’s on hold. On hold, on hold, on hold. On hold in 2012 because I stupidly stopped my contraceptive pill and became hypomanic and then because I was so physically unwell. And then because I found out the Olympian cheated on me and I was beside myself with grief. Now because I’m more physically unwell than I ever have been in my life and being this unwell is a risk factor for depression. Not for mania though. I couldn’t possibly become manic. I’m far too exhausted for that.


We all fall down

275mg Quetiapine

I don’t understand how people write when they’re depressed. I can never write anything at all.

My mind goes blank. I become slow.  My senses are muted.

A friend said to me the other day that she could relate to ‘living in a cloud of black’. Except, that’s not what it is like.

It’s like I’m here but I’m not. The world is dull and so am I. The sun is shining brightly, but the sunlight hurts my eyes. It’s warmth on my skin makes me want to shrink away to a place where nothing, where no one, can reach me.

It’s not dark, but it’s heavy. There is pressure. It rests above me and around me, and it pushes me down.

It’s not dark, but there is a man here, with his hands around my throat. Holding me tightly, so I can just barely breath, but not too much. I am suffocating slowly. I am losing the will to fight. I am weakened.

People without a mental illness think they have some sort of idea what it is like, but they don’t. There is something disheartening about those who think they understand, those who think they have any kind of idea that they know, when really, they know nothing at all.

It is not helpful to me when an ignorant person claims some sort of understanding. You can never feel my experience. I can never feel yours.

This is a waiting game. I watch the clock, and the clock watches me. But there is always a way out. There is always hope (but that is not what depression is telling me). There will always be change. What goes up must come down. And we all fall down.

This is not abnormal. This is Bipolar. This, is me.

“I need you to help me kill myself”

If you are thinking about harming yourself, there are 6 things you need to know before you do 

“I need you to help me kill myself”.

The room is silent as my parents stare across the room at me. They’re on one couch, I’m on the other. If they’re scared, they don’t show it.

“I can’t do it myself. It won’t work”.

I wait as they mull this over. I’m not aware of it at the time, but it’s hard to think of the right thing to say when your daughter wants you to euthanize her.

Dad looks at me, “No”.

“You’re selfish!” I snarl. “I have to live this life, not you. Why should I suffer? Why should you be allowed to keep me alive simply because you want me to be? Just because you’ll be a bit sad for a while?”


“You’ll be upset at first, but as time goes on, you’ll come to realise this was the best decision for everyone”. At the time, I truly believe this.

“We will never get over it”. Someone says. Mum or Dad. I don’t know. My ability to concentrate is hazy.

This is rock bottom; asking the people who created me to help me die because I am too incompetent to do it myself.

To me, the best possible solution for everybody was that I was dead. Plain and simple. Black and white. I did not see the inbetween, the possibilities of getting better, of being better, I forgot what it felt like to feel good, to be alive. I could not do anything to lift myself out of it.

The only thing I thought would work was death because then I would not be in it anymore and it was unbearable.

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