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.