The Trouble with Seroquel/Celebrity Mental Health Awareness Week

This is a brilliant (and old) video from Liz Spikol about coming off Seroquel.

And man, I hear her.  I’ve taken myself down to 50mg now and I can’t sleep properly unless I take more.  So that’s not working out too well.  And it has been the drug that has worked so well for me, but I can no longer tolerate the side effects.  I am really well at the moment, I have been for a long time.  But the sedation, the fog, the lack of feelings are now too much of a compromise to live with.  I’m missing university lectures often enough that I could be booted out of university if I didn’t have these mitigating circumstances and I come out in a cold sweat thinking of how much the shifts on my next placement are going to mess with my sleep.   I am not sure I am cut out for this, as things stand.

So, I’m seeing the doctor on the 2nd and categorically asking to be taken off this medication.  Not reducing the dose (it does nothing but make it take longer to knock me out, and if I NEED TO SLEEP I have to take more anyway, and I still get the daytime drowsiness) in the long term, but in the short term, then off it.

I can’t properly articulate the way I feel on medication.  On one hand, a part of me thinks I should shut up and get on with it.  And I worry, “Is this as good as it gets?”  And it’s pretty good.  It’s very far away from where I used to be.  It took me a long time to get here and it’s only really been in the past year that I have.

But I am so tired, all the time.  I sleep easily for 12 hours and the rest of the time I’m in a fog.  Recently, I have realised (not so much realised as admitted to) that my feelings have become very flat.  Some friends have queried it as depression, but it feels different than that.  It is a not-caring, a can’t-caring, a way of experiencing the world while feeling separate from it.  I don’t feel extremes of emotion anymore- not happiness, nor sadness, either. I am fairly certain that this is the medication as it is so against my nature to be this way.  If there’s one thing I think most people could agree on about me, it was that I have a somewhat mercurial nature.  Not anymore. My feelings go away when I am very depressed, but again, it’s not that.  I can’t explain why, but I can tell you that it isn’t.

I wonder what my life could be like otherwise.  I know, in a way, I made a pact with myself that, to be well, I had this space:

_________

_________

to live between.  It isn’t enough.  I feel trapped and squashed.

This reminds of me a blog post that should all read this blog entry by Zoe Smith: Mental for Five Minutes, on a topic that often frustrates and angers me- “celebrity” mental health.  On one hand, I think, “Oh, fair play to them for coming out with that”.  On the other, the way these stories are told (they are almost always totally recovered, and the spells of mental health problems are short) glamourise and trivialise the lived experience of mental health for the rest of us.  (Although Zoe mentions Rethink, who I personally have a lot of time for, and I do actually think anti-stigma campaigns are a good thing.  It’s the celebrity stuff I take issue with).

It’s things like what I’m going through now- as a person who considers themselves to be functioning at a high level- that make me realise how far the celebrity articles are from reality.  For a start, mental health issues aren’t as stigmatised in artistic professions as they are in day to day life.  A person with depression as a singer as a cache that a person with depression as an office admin doesn’t.  What also gets me is that there is, “The End”.  All done now! Hooray!  When for so many people, that isn’t the reality.  Including me. (Or the lovely Narky, who wrote a great blog on this today).

I’m pretty cool and stable but it comes with a price- namely, medication and on a more visceral for me level, my self-conception.  As a person who considers themselves passionate and creative but who in practice these days is dull and husk-like in the brain,  And always, always tired.

I have the double-bind feeling of still being unsure of my own diagnosis so not sure how to articulate what I’ve recovered from.  I think, officially (it’s on my documentation and letters from the GP), it’s bipolar disorder, but it could also be borderline personality disorder.  The latter I have no symptoms of at all these days (and I never received any treatment for it such as therapy, so did I ever have it to begin with, or did I just have the teenager traits?), but I do struggle with my moods and energy, and that’s what I pour my strength into managing.  But because I’m not sure, because I hate entering into the discussions about it with doctors, it means I try to avoid them altogether.  Which has been what was keeping me away from talking about my medication with them, unless forced to, as I am now. It has also given me pause for my own language, and means I find it hard to find the words to even discuss my experiences.

And the benefits.  I know not everyone with mental health problems is on them.  But I live in terror of losing my DLA.  I need it to live- it keeps me out of not having to work part time, too, which would send me over the edge of my carefully managed stress levels.  It helps me get taxis at times I just too sedated and spaced out to navigate the world without crashing into a bus.  There’s not much of that out there, in the big celebrity world.  There is a bigger stigma than one against mental illness, and it’s the stigma of being someone with mental illness who’s also on benefits.

The NHS.  The CPN appointments in little beige rooms.  The long sleeps.  The psychiatrists you didn’t pay.

And how about how you ruined your life?  Or your relationships? Your bank account? Your career?  This doesn’t happen in celebrity world.  They always come out stronger, and better.  And yes, so can we.  But often the strength comes from the grief of loss- the loss of your identity, the loss of your job, the loss of your relationships, the lose of your independence, the loss, the loss, the loss that comes from having a mental illness.  Celebrities seem to live in this consequence free bubble as far as their mental health goes.  How I wish I did.  I am better now but the stuff I have gone through has fractured parts of myself I didn’t even know existed.  My bravery! I was brave.  I was ballsy. Even my bravery in making new friends or contacting old (pissed off at me) ones.  I didn’t realise what I had lost until I lost it.  I used to talk to anyone. People used to tell me they had a hard time imagining me as someone small (I’m 4ft 11″).  I did, too.  And now I am small. I think of myself as a small little person.  I shrank.

I was fun.  I’m not fun now.

These campaigns do not touch it.  Not even close.

I can’t think of how to end this post so here’s a photo from Die Tote Stadt.

11 Responses

  1. My biggest issue with the celebrity stories is that it always seem to end with ‘…and then I lived happily ever after’. Except for Kerry Katona, but she’s seen as a laughing stock who’s to blame for her own problems. I don’t want mental illness to be portrayed as something that is just cured, because then when I’m not better after 8 years, it seems like maybe I’m just not trying hard enough and I’m just being lazy (which is what I worry people think of me, especially as I’m on benefits). It is helpful to raise awareness of mental illness, but on a personal level I don’t find it at all helpful seeing all these celebrities who recovered in next to no time. I know people want a good story, and a good story has a good ending, but when you portray mental illness as something that can be recovered from in a matter of weeks, it doesn’t help people understand because it really down plays how severe it can be.

    Personally, I need more than for people just to realise that mental illness exists and that it doesn’t make you a potential serial killer. I need people to understand how crippling it is, every single day, and how it’s something I will be attempting to manage for the rest of my life, that I probably will get ill again (hell, I’m not great right now and I thought I was going to be discharged) and that saying that is not saying that I’m weak and that I’m not strong enough to fight, it’s just being realistic. The best way to portray that is through people telling of their own experience, but in all the ‘celebrity reveals’ I haven’t seen anything that reflects my own life, apart from Kerry Katona slurring on national TV, and we all know how that went down. The fact is, people are more interested in hearing from famous people, but to become famous you have to be able to get out of bed, wash yourself, feed yourself, dress yourself, be able to face walking out the front door. The people can’t do those things because of their mental illness aren’t often not going to have the opportunity (or energy) to tell the world what their life is like, and so people just won’t know.

  2. Seaneen, your post is spot on. You express the whole messy everything perfectly. I hope that you can find your words with the professionals again, you deserve to find a med that doesn’t knock you for six.

    There’s just one little thing you wrote that I don’t agree with. And that’s the bit where you say you’re not fun anymore. You are fun. You think of yourself as a small little person, but that’s not how others see you. You’re fantastic.

  3. That reminds me of a story Bruce Levine wrote not so long ago (http://www.alternet.org/health/154915/how_psychiatry_stigmatizes_depression_sufferers/?page=entire) which in my opinion romanticises depression. Unlike Churchill and Lincoln who were quite happy running Britain and America respectively, I usually have to settle for much more modest successes while depressed, such as managing to eat and leaving the bed. These sort of stories really fuck me off. (Btw, why is everyone always mentioning Churchill as some sort of a mentalist martyr? The man actively supported segregation, sterilisation and confinement of the “feeble minded”!)

  4. Hello Seaneen, Another good Posting reminder.
    Keep Calm and Carry on. David.

  5. I take seroquel to boost my antidepressant and slow my racing thoughts. I am also in a catch 22 situation. I used to be someone who would wake before her alarm clock and be up with the birds. Now I need two alarm clocks to get myself up for work and I regularly walk around in a fog for the first few hours I am up. On the other hand it is the only thing that has ever calmed my racing thoughts and made them more ‘organised’ and rational. I do sympathise and wish you luck in coming off it.

  6. Hmm for some reason I read this post yesterday and my little reader thingy in the corner of my screen only notified me of this as a new post today!
    On seroquel, rotten drug. I took it for three weeks and then refused to anymore – given that I am uber-compliant, a big thing for me. I couldn’t think, or do anything while on it, felt like I was walking around in a fog. Kept dribbling too, which was nice. Also my mum said I was looking on the verge of violence all the time and that she was scared of me.Mind, when I told the psychiatrist about this, she said she’d never heard of these side effects before! (Funny how I found others had had the same after a few seconds on google!)

  7. Yeah, I hear you. Seroquel isn’t easy.

  8. Re Feeling detached from the world but not depressed.

    Seaneen.. I’ve suffered with the kind of ups, downs and psychotic episodes* that you describe for 18 years.
    Lately I feel like I’m neither up or down..just observing. I think I just had enough of feeling.. its like a hardness but its not uncomfortable.

    *I hate the word bi polar.. or any kind of label.

  9. […] Seaneen wants to come of Seroquel: I can’t properly articulate the way I feel on medication.  On one hand, a part of me thinks I should shut up and get on with it.  And I worry, “Is this as good as it gets?”  And it’s pretty good.  It’s very far away from where I used to be.  It took me a long time to get here and it’s only really been in the past year that I have. […]

  10. I have a love/hate relationship with seroquel. On the one hand it has been the only reason I sleep for the last 13 years, on the other hand it makes me drowsy and I’m always afraid I will develop tardive dyskinesia after being on it for so long. Whenever I try to go off of it, even if I wean myself off slowly, it never works. By the time I’m down to 50mgs I can’t sleep at all and it’s painful and I have to start back up to 200mgs.

  11. Ruthy,

    Sleep is the key to survival as you probably know, I have been fortunate in I regulate with Zopiclone.

    David.

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