The Most Pointless of Posts

Apathy is sinking in, everything is slowing down.  I used to be excited about doing things, I used to be able to do things.  Now all I do is stare into space/at the TV.  It’s taken an hour to write these four sentences.

I’m meant to be doing some art stuff for a friend but I can’t think.  I’m meant to be making a sock dinosaur but I don’t quite seem to be able to get up the motivation.

A sock elephant.  I need to think about it, but I can’t, I’m just all in a muddle and my mind just can’t, can’t… I can’t even remember what I was thinking about.

The voices aren’t helping of course.

This is the most pointless post ever but I might need it one day.

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Sleeping like the Dead

I’m lying here, waiting for sleep to come. I have to wait until the quetiapine kicks in because I am incapable of sleeping without any medication these days. I’ve forgotten how. Like those times you forget how to speak and stumble over your words, but rather more of a stumble over a basic function. But sleep will come, and when it does I will be out for the count, sleeping like a log a baby the dead, practically unconscious.

Come the morning I will be unable to wake up. I will have to fight my way out of sleep, clawing up from the dreamy depths. Some mornings, if I wake too early, I can’t even move my arms and legs. Helpless.

I hate quetiapine. I’m not even completely convinced it’s working. There’s not much I can do about that though.

On Stigma

The last time I was brave enough (read: well enough) to walk through my local town centre on my own I was anxious, watching people oh-so-closely, jumping at sudden movements and avoiding everyone in high vis (just in case).

The voices were talking me through, telling me who I should hide from, who was injecting thoughts into my brain and who was just monitoring me.  I caught myself in a particularly reflective window at one point, talking back.

I did my shopping, sort of, in no particular order – mostly just as I remembered what I needed.  One thing at a time, minding my own business, not talking to anyone, not even making eye contact.

Some teenage boys surround me, I feel trapped, the voices start shouting to run, get out.  They don’t hurt me of course, public place and all, but they laugh, jeer, taunt – ‘go back to the loony bin, schizo‘.

And things of that nature.

Considering I was already terrified of the town centre I think I handled myself well.  I walked straight through them and went straight home.  I cried for an hour, and I am not one to cry much at all, even in the grips of severe depression.  I mostly cried out of fear, shame and humiliation – this is my town, as much as it is theirs; there is no reason I should be any less welcome than them, there is no reason for them to make me fear being in it more than I already am.

I also cried because here is mental illness stigma alive and well.  Here is ignorance.

I don’t have schizophrenia.  There are many reasons why I might be talking (apparently) to myself.  I might have bipolar disorder, I might have a dissociative disorder, I might have any number of diagnoses.  It’s possible that I was just thinking out loud.  What marks someone as having a mental illness?  Maybe it was because I was in four-day-old clothes and looking a bit dishevelled, but that’s still no excuse for what is essentially abuse.  And isn’t that half the problem?  If I can’t identify what it is that happened then how am I to address it in the wider world?  How do we educate people when we’re not 100% sure about why they’re quite so… nasty.

The whole incident got me thinking about stigma, naturally, and the thought occurred that there are so many kinds of stigma that I didn’t even know where to start.

Brainstorm time!  I had a few ideas based on stigma I’ve experienced, and from what I’ve heard from other people these things are fairly typical.  I feel stigma can be broadly separated into two categories: positive and negative.  By ‘positive’ I mean these are kinds of stigma, actions or beliefs, that are meant kindly but ultimately have a negative impact.

Positive Kinds of Stigma Negative Kinds of Stigma
From family and friends From the public
GP overreacting From health professionals
Government budget cuts

I am very lucky in regards to my family and friends – when I first told them about my illness and diagnosis they were very supportive and have continued to be throughout.  There are a few other sorts of problems I have encountered with a few of them, which is not unexpected given that we are all human.

My mum tends to overreact to any display of symptoms.  She’s very alert to my triggers and early warning signs, which is fantastic and has saved a descent into crisis more than once, however it does mean that she makes mountains out of molehills.  If I don’t sleep very much for one night she panics, thinks I’m getting manic and tries to talk me into taking a sleeping tablet.  If I buy one frivolous thing, she panics and thinks I’m getting manic.  If I am just a bit sad she thinks I’m depressed.  She’s a mother and wants to keep her child safe (because even though I’m 27, I’m always her little girl apparently).  I’m not sure how to deal with this issue.  It’s a delicate one.  I have told her that she needn’t be quite so alert and responsive but it didn’t seem to do the trick.  I think it’s all caught up in her own neuroses around not having spotted me (and my sister for that matter) starting to get ill when we were in our mid teens.

My friends and other members of my family tread on eggshells around me.  I hate people walking on eggshells.  I have told many of them that it just makes it worse – that what I really need is normality and to feel like the world is still turning.  I am guilty of getting too stuck in my own head, so life carrying on is so helpful in terms of keeping me out of it.  If they want to ask questions, they should ask.  I will always tell them if they’re pushing too hard or if I don’t want to answer.  They know this.  I have told them.  I am not a delicate little flower.

The other kind of ‘positive’, well-intentioned stigma I have encountered is with my GP.  Now my previous GP was appalling; she had no bedside manner and was completely incalculable.  By sheer chance I saw a different GP on one of the many, many days my old one was off and he is amazing.  He specialises in mental health and had done stints with the crisis team.  He bent over backwards to get me what I needed and even offered appointments if I just needed a chat.  I am so impressed – I didn’t even know his kind existed.  But like my mum, he overreacts.  When I was manic in August (or whenever it was, I’ve lost track of everything now), he wanted me in hospital when despite everything (superpowers, etc.) I was mostly functioning.  He’s also continually been wanting my quetiapine increased to something massive.  On reflection, he might be right about increasing it, even if only by 50mg or so.  Again, overreaction is not a helpful kind of stigma – just because I have this illness doesn’t mean small things are going to become big things.  In fact they quite often don’t.

Good intentions aside, we’re left with the more traditional kinds of stigma – most notably the example I gave at the beginning.  Those boys probably knew virtually nothing about mental illness, let alone the esoteric nature of voices.  It’s possible that they have encountered someone with mild depression or anxiety – one in four and all that – but not anyone with anything dubbed a ‘serious’ mental illness.  I hope no one in their circle of friends ever gets unwell, I think they’d be unlikely to find any sympathy.  The boys clearly didn’t understand the differences between schizophrenia, psychosis and hearing voices, and why would they?  The differences are really only things you find out about if you have some stake in them – your own illness, someone close to you, or it’s your job.  I’m happy for them that they’ve probably never experienced that level of illness close up, but at the same time they need to learn.

Members of the general public can show ignorance in their own ways; anything from a passing comment to a full-blown belief.  Is it okay for people to describe the weather as ‘bipolar’, or to have had a ‘manic’ day?  Personally I think the colloquial, non-clinical uses of these words are ultimately positive because they normalise mental illnesses and make them less of a taboo.  I do recognise, however, that it needs to come alongside recognition that they are illnesses and no laughing matter.

At the other extreme you get the aforementioned boys and other venomous attitudes.  A close friend told me about a man she worked with who had commented that people with mental illnesses should be sterilised.  Which smacks a bit of a certain dictator’s eugenics policies.  It’s the attitude that is intolerable rather than the ignorance.  Knowledge is easy, changing attitudes is hard.

Then of course there’s a kind of stigma we face even from health professionals.  I mentioned my wonderful GP before, and how excellent he is when it comes to my mental health.  Unfortunately, he’s not so great when it comes to my physical health.  The last time I saw him was the last time I felt able to have any contact with health professionals (I’m now rather too muddled about phoning and exactly the process of getting there and what have you), and I saw him about my mental health then.  I mentioned that I had ruptured two or three ligaments in my ankle back in August and that my ankle was still swollen and painful now, six months later.  My mum (a fully qualified and experienced podiatrist) thinks I’ve got some bone chips floating around in there so I’d asked for an x-ray referral.  In his wonderful GP flakiness he couldn’t manage to deal with more than one thing per appointment, so my physical health takes a back seat.  I’d also asked GPs countless times for an ECG referral but my reports of an occasional fast heart rate and feeling like it’s missing beats is always put down to anxiety or paranoia.  I finally got one last year when I was an inpatient on a mental health ward and everything was fine on it – but of course this is an intermittent problem that I wasn’t experiencing then.  I admit, it very well could be anxiety or whatever, but there’s also a chance that it isn’t, and really that is a chance they should not take.

My psychiatrist is completely uninterested in me.  That’s fine – bipolar is boring, he’s seen it ten million times before – but I would still quite like to be treated like a person not a statistic.  Hello, medication, goodbye.  I haven’t actually seen him in over a year, everything is done through my CPN (who is great).  Is that stigma?  Or is he just an arse?  Am I not the ‘right kind of mental’ (a problem the lovely Mental Political Parent has discovered time and time again)?

And finally on my list, we have stigma from the government.  There are many notable people blogging about the injustices of government policy (notably Diary of a Benefit Scrounger), so I won’t go into it here.  I’ll just say that it seems that the cuts to benefits and services target the most vulnerable and those that are least able to fight for basic human rights (heating should not be turned on for a ‘treat’, everyone should be warm).  How can we accept that mental illness is not our fault, and not something we deserve when the leaders of the country treat us as non-people?

And now my brain has run out of go-juice so… that’s all folks.

Control

I think I might be starting to lose control of my life, again.  I have (had?) a handle on my mood – it’s a bit low, but is it depression?  I’m not sure, but what are my early warning signs… I’ve forgotten.  It always raises a flag when my dad cooks or tries to take over the cooking of dinner.  It’s his way of looking after me.  He doesn’t always realise he’s doing it, but it does make me question what may or may not be going on with my head.  What are my other warning signs… I swear I wrote them down somewhere… Nope, lost them.

I’ll have to think of some.  Apathy (check), sleeping too much (check), oh what else… I don’t know.  I can’t think.  I can’t think at all.  Things are slipping away from me, out of my control.  Standing in the checkout line at asda (terrified, with someone, but terrified, people following, people watching) I saw they had pay as you go sim cards for sale.  So I think if I get one I can put it in my phone and then they won’t be able to track me, but of course the tracker chip is in the phone as much as the number/data/sim is tracked.  And the bugs on the line… I don’t know how to get rid of them, and then there’s the one in my heart still.  I think this is still in my control, I think I can still tell myself that none of this is real, no one is watching me and no one wants to hurt me.  At the same time I’m modifying my behaviours – not going out alone, avoiding crowded places, trying to blow up the chip in my heart through gymming it.  I’m still here, in reality, I’m sane and I intend to stay that way.  The voices are there of course – mostly nonsense phrases or talking about what I’m doing.  Some instructions, but harmless.  I’m mostly okay, but I need to stay that way.

What am I doing about it?  I have Plan A and Plan B.  Plan A is increase my antidepressant to 45mg a day, which I did… erm… two weeks ago? So I wouldn’t be seeing an improvement in mood just yet.  Plan B is phone my CPN.  I really don’t want to invoke Plan B.  I want to do this on my own, I want to cope on my own, I don’t want to need help.

I Went to a Bipolar Group

I went to a bipolar group.

It was… different.  It’s run by a guy with bipolar himself – had it for many many years – and the group is completely detached from the NHS and the CMHT.  I’ve joined halfway through its pilot (it finishes in April, they are fighting for funding – don’t need much, just for handouts, tea and coffee, room rent), so it’s an established group, but a welcoming one.  It’s run as a drop-in so there’s no pressure to be there every single week, no pressure to ever go again.  What is most important about it is that there is no pressure to be well.  They’re very accepting.  One lady was hypomanic and getting higher, with no psychiatrist appointment for two weeks.  She wasn’t sleeping so everyone told her to see her GP for sleepers, or go to a pharmacy and get promethazine.  It’s helpful without being pressured.  There was no pressure to speak, which is good because I’m feeling low…

I think I will go back next week.