The power of labels

Some people seem to like labels, and I mean really like labels. It makes things neat.

Label a condition or personality disorder. Label the ‘symptoms’. Label the experiences.

It’s ok you’ve got your labels. So you don’t need to interact with the person in front of you. The person speaking to you. The person trying to exist as a person.

No, the label is easier, isn’t it?

Once that label has been attached it’s hard to shake. Whatever you do is scrutinised against this label. Looking for signs. Looking for evidence.

It makes it easier to stop seeing the person.

I would argue that this was a plea. But, it isn’t. The people who give the labels wouldn’t read this. Perhaps it doesn’t fit neatly enough.

So, what now?

I’ve survived the diagnosis.

I’ve dealt with the stigma in my family

I’ve gone through the crisis and come out the other side.

But still you don’t trust me.

Still you think I am unstable.

Still you think it is ok to discriminate, as long as it is softly and quietly

I’m awake

So new book has arrived. A DBT diary. I’m hoping to use this to help me treat my BPD. As my CCG won’t fund this treatment.

Maybe this election might make my MP (safe seat) see this  by giving a ‘real’ example. We exist here in a bizarre postcode tango. If you get treatment in one area, because that is where you are sent, it bars you from treatment in your ‘actual’ area. But, you can’t get treatment in the first area due to living in area 2. Still with me? Don’t worry I’m not either.

Being manic

Is it just me or do people not get being manic? I’ve lost count of the number of times I have been told it must be great having that manic energy to achieve things. What does that even mean?

I’ve tried in the past to smile and nod. This seems to give people free reign to discuss medication and whether I feel ‘reigned’ in. Do you think you would get more done? Do you think you’d achieve more? With the subtext being, if you were manic……

Let me make this clear. When I am manic it is the precursor to psychosis. When I have lots of energy and ideas, I seem like I’m buzzing. I get that that must seem attractive. But, really it is just the beginning of the end for me.

If you could see behind my eyes, you would see that I’m not sleeping. I’m counting. I’m calculating. I’m making lists. I’m buzzing. I’m crawling. I’m working. I’m listening. I’m talking. I’m spouting. I’m twitching. I’m picking at my skin. I’m clicking. The thoughts are running through my head. Nothing is still. Nothing is calm. Nothing is quiet.

But, hey. I’m getting stuff done quickly. This must be good? Right?

No. The reality is tiring. I’m juggling these things in my head, whilst still trying to respond to the world as it is happening. Do you know how tiring that is? I’m trying to swim through and work out what is real. I’m knackered. It’s not cool. It’s not buzzy or whatever. It’s me.

TV woes….

So I’m watching a nameless soap and one of their characters who has bipolar is pregnant. Newly pregnant.

She’s had the conversation about mental health and perinatal care with her partner. But the medicinal considerations seem lacking. I know it is just a soap, but right now I feel so angry. So let down. So empty.

Maybe I should show my hand. I want another baby. I’m taking sleeping pills (in themselves frightening with a child), antidepressants and antipsychotics. I can’t just stop them. But all of them say not suitable for use when pregnant and come with some scary side effects and dangers mentioned.

So the dilemma is, do you taper off taking them and hope to fall pregnant soon. But, then what about breastfeeding after? Or do you keep taking them and check obsessively for signs of pregnancy then try to taper off?

None of this has been mentioned, hopefully yet, but it just feels like a huge absence.

After my child was born I slipped into what I now recognise as psychosis and paranoia. I was scared someone was going to take her, recognising that I wasn’t her mum. Made worse when we registered her birth and the registrar messed up and entered her name as the mother and me as the registrar. So to deal with this I took photos of my child every single day. Not just one but 100s. So that I could prove the child was mine and I hadn’t done anything wrong.

Where is this story on TV? I know it is isn’t sexy and it certainly doesn’t have a quick fix. But where is the mother like me?

Watch out for the ‘sane’ ones!

This was something said to me this week. The speaker clarified that they had no idea what sane or normal meant. But, they were clear on the idea that those who call themselves sane or normal may be the ones to watch!

I’m not sure what to make of this as they said a lot of other things that didn’t make much sense to me. But this, this resonated. I’m getting ‘help’, I have a diagnosis and a label that places me somewhere on a line away from normal. But, you know what I’ve seen a range of ‘normal’ and I’m not so sure any more.

The buzz is back..

So I missed a few doses of my anti-psychotic. I didn’t intend to. I didn’t notice for a while.

Then the buzz returned, and the floor started swirling from time to time. Oddly I didn’t feel concerned. It felt like a comfort blanket. The silence of medication had been broken. The world felt more colourful, if somewhat overwhelming. I would love the people who tell me to take medication to experience the world through my eyes and my head, for just an hour.

At times it is frightening. Trying to go for a walk when everything around you is chattering and swirling takes a lot of effort. But at other times it is comforting, as if I am never alone. I take solace in the swirling patterns and movement, trying to make sense, trying to see patterns and trying to swim my way through.

The long and short of it is I got found out! People around me didn’t appreciate the return of me I suppose. Which makes me question medication. Am I taking it to fit in? To conform to an accepted standard of normal? Am I taking it to keep me safe? If so, from me or others? I am taking it again and will continue to do so but I do wonder sometimes.

I’m all alone in here

Not quite as self-pitying as it sounds. But, just now I realised my head is silent. There is nothing. The sound of silence is quite literally deafening. There is NOTHING.

I don’t know if I remember a time without something in my head. The running commentary, alternative running commentary of the world around me or the buzzing swarm. I am assuming this is the quetiapine ‘working’ and removing some of the psychotic symptoms. But, I genuinely don’t know how I feel about this. I know that I should be happy that the tablets are working but I almost feel robbed of some of me.

I have had this in my head for as long as I can remember. I have never been alone, and it wasn’t until it was gone that I realised how big a part of my life the noises and commentary had been.

There is also a little bit of me that feels scared, scared that I am changing or have changed too much. I also recognise from experience that it is around this time that I normally think everything is great and I should stop taking my tablets. Although for now maybe the silence is a small price to pay.

Need help? Sorry let’s check your postcode first

Argh. Sorry for the pity-party but I’m so angry. Things seem to be slowly getting worse in terms of accessing healthcare around here. More and more services are getting shut down, or so it seems and more and more you phone a service that you have been referred to only to find out that because of your postcode you can’t attend.

My GP sent me for treatment with the nearest Adult Mental Health Team, they have provided excellent (if somewhat overly cheerful) care. They suggested lots of follow-up services to help support me with the BPD and other personality disorders that I have.

Great, after some time ruminating and wondering if I was brave enough to make the big step and ask for help. So I sent off the referral form, which asked a lot of big questions that prompted some traumatic memories and thoughts. I then get a call saying unfortunately my CCG won’t fund them to offer me this service as I don’t live in the right area.

So I’ve filled in this enormous form that has raised some issues for me and now what? So off I go to try again and find out if my area offers the same or similar services……..

Nope they don’t. Fab how very helpful. How can one area offer the treatments and support suggested by NICE and the NHS but the neighbouring area just leaves you? When people talked about the postcode lottery I always assumed it was a media term or that in reality no-one would turn you away if you needed help.

So now what?

Swimming in my head

Not the thoughts going round and round sense, but in the sense of feeling that I am swimming towards the surface. When I get there I’m sure I will be able to see clearly through my eyes.

Until then I feel like I am slowly pushing up through the murky swarms.

Every bit of praise seems to be tinged with regret and reminders. Well done a day not self-harming, and why do you think that is? What makes today different? If I knew the answers I probably wouldn’t be here, but apparently that is not a helpful response.

Every thought, action and feeling must be probed, judged and measured. Or at least that’s how it feels at the moment. How I sit, how I talk, what I wear, what I do with my hands or the way I look around or don’t. Every little thing is being noted and measured. It’s hard not to feel paranoid when you know that everything you do is being noted. Noted, to determine how far you have recovered since the last crisis.

But all it feels like is yet one more doubting and disappointed person.