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.

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10 thoughts on “Medication Frustration

  1. I’m sorry to hear things are so tough for you. Does the journaling help?

    I worry that my happiness is actually hypomania too.

    My psychiatrist has given me two choices: Fiddle with my medication and risk an episode, or stay on my current dosages, and always feel a bit flat. I chose the later and she said we should keep things how they are for two years. So I know what it feels like to be “on hold”.

    • Thanks for your comment! The journaling definitely does help. I like to get things out, but for a while there I was just so tired and so bored of writing the same old crap that I stopped for a while. It got me through the past year though.

      Good on you for choosing the option that will hopefully keep you doing well!

  2. Thinking of you as always. Sending love and healing your way. xoxo

    Have you considered trying alternative approaches? I am thinking EFT or radionics… really because both have been effective for me (though I do not have Lupus). They are both energy work type modalities. I know there’s lots of info on the Internet about Lupus and EFT…

    It’s just a suggestion. You know what’s best for you and I support you 100%.

    Much love,
    Trish

    • Hi Trish, thanks for your comment and the suggestions – I’ll have to look into those! At the moment I’m taking lypo-sperhic vitamin c and just upped my dosage which has seen a massive increase in my energy levels. Such a welcome relief!

  3. Hey Sweetie, I am so sorry that you are suffering as you are.. I am not sure what to advise except try to love yourself through this.. I am sorry about your relationship too I know how devastating that is.. sending love and strength to you.. big hugs.. it will get better…

    • Thank you 🙂 You know, it’s been over a year since the relationship thing. It was so, so, so painful and awful and everything that I haven’t been able to write about it yet but I will. And I have manged to get through it and feel so much better now about that.

      You’re right, things will get better. Hard to remember that on the bad days, but I’m having a good day right now that it’s fantastic!

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