The wind, time immemorial & the inner explosion

I live in a small churchyard where there are still bodies underground but only one marker left behind to remind people of what was once there. These days it’s a tiny park just over 1/3 of an acre and is an open secret in my part of town. Most people don’t know it’s there and those who do use it as a cut through without looking up from the desire path that they’re establishing and re-establishing as they go.

I walk around the perimeter with my dog most days and I often walk the perimeter alone thinking of goodness knows what.

Often I will see the trees in the far corner moving gently and they set off a ripple that becomes stronger and more audible the closer it gets. Sometimes the movement dies out before it reaches me, sometimes is batters at me and brings rain but, more often than not, it passes by in a fury.

The gentle undulation in the trees remind me of approaching mood changes and I question how quickly they will descend on me, if depression or mania will dominate the episode and even if, yet again, I’ll be driven to the point of suicide.

Not all warnings of mood changes turn into episodes because sometimes it’s just feeling pissy or happy because I’m a human.

I do not like being caught up in the tornado of mania but it picks me up and spits me out at will these days. Other people have told me that they love the giddy spinning around even though it is also frightening at the time. I am left exhausted, disorientated and I wish I didn’t want to stay alive quite as much as I do.

On the days when the winds bring rain and the only way to walk is with me bending into the wind and hoping I don’t get swept away are the days of depressive episodes. Life is a battle and the storms rage as much inside my home and under cover as they do outside – a permanent exposure to the elements.

This has been happening since, it seems, time immemorial (which 1189 but don’t quote me on that) and it feels as though it will go on long after I am dead, It waited for me to be born and it will haunt me when I am no longer here – it will never let me go.

I didn’t ask to have bipolar disorder and I can’t think of anybody, in their right mind or otherwise, who would wish it upon themselves.

I lived with these episodes for a long time managing to crawl back to the real world but my resilience eventually disappeared along with life as I knew it. Something inside me burst out and I no longer fit into my own skin.

Well hello depression

I have always been on the depressive side of manic depressive and even during the times when I rapid cycle so many times a day that I lose count there was always the certainty that when the cycling stopped that I would stop in depression and not mania.

Depression, while a disgusting and debilitating experience, has always been familiar to me. I never recognise the onset of it but once I do I know how to handle it. I have a check list of things to do until I see my GP. I see my GP at least once every three weeks so I never have long to wait. People often envy my frequent visits to the GP but try being so ill that they’re seeing you often to keep you alive – it’s nothing to envy.

For the past two years or so I have been hypomanic. Hypomania is mania without psychosis. I have never had a full blown pyschotic episode but I have had episodes that are so close that I’ve felt the cold breath of psychosis on the back of my neck.

I hate being  manic. The management of my illness is centred around being in control. I can’t control depression but I can manage it if I’m prepared to lose sleep and look like a mess.

Over the past week or so I’ve seen my sleeping pattern change. It is a paradox that when I am manic I sleep soundly and when I’m depressed I get insomnia in a big way.

I have felt lethargic over the past few days. There have been bursts of  energy and enjoyment but today I just want to curl up into a ball and live in the airing cupboard for a few years. I sent a message to my best friend last night saying that I couldn’t find any positive things about the day, that I wanted to get monstrously drunk (I’ve been in recovery for 26 years) and that the safest thing I could do was to go to bed.

This morning I sent him a message saying that it had dawned upon me that I was actually was depressed. It had taken me two days to get to that point but I got there in the end.

Depression is a violent drag away from all that is enjoyable and worth living for but the feeling is much better than the relentless optimism (and the lack of empathy that came along with it) for the past two years.

If I spend the next few days, or weeks, or months crying and feeling like nothing counts anymore I’ll be happy in a weird kind of way but anything is better that the relentless mania and all the chaos and indignity that comes with it.

Privacy and the peeled baby

Today I feel exhausted and the pain I felt from writing my most recent blog has left me feeling soulless. I rarely expose so much of myself when I write. People often think that they know me through my writing but that’s not true – they learn of my experiences but me, my inside self, is left inside of me.

There are two reasons for this and they are that I’m an very private person and that I’m a peeled baby.

So what is a private person doing writing a blog and what the hell is a peeled baby?

I write to let people know the reality of living with mental illness and I am mentally ill. In 45 years I have experienced little respite – the longest period lasted eight weeks. I do not write to raise awareness. Raising awareness is an empty phrase because you are aware of mental health problems or you are not and it is far better to educate people in a meaningful way rather than shouting very loudly, “Hey, do you know that there’s something called Mental Illness? No? About your business then.”

I tell you of the devastation of it causes in my life, I tell you of my reality. What you don’t know is the colour of my eyes, what my favourite fruit is,  what this wonderful bed I talk of is like, why I prefer yellow roses over all others and the biggest (and toughest to cope with) phobia that I have.

You don’t know me, you know of my illness.

So what is the peeled baby thing? My GP once called me this and it’s a phrase he only uses when he refers to me. Simply he sees me wearing a suit of armour so tough and sturdy that nobody can penetrate it – life slings stones, boulders and unexpectedly attacks me and, to all intents and purposes, all these things bounce off me. Then I go home.

When I am in my safe place the armour comes off and there is a peeled baby inside of it; small, vulnerable and she has no way of coping with the world. She sits bleeding and unable to cope with the the things that other people call normal. She weeps sometimes and other times she is filled with an energy that is frantic and then she sits down again and is that peeled baby once more.

That is the harsh reality of my life. What you see is not what you get and I think I’m tired of hiding behind the armour. I’m too tired to pretend I’m coping. I’m tired of living the way I do. I’m tired of everything.

The only thing that’s keeping me going today is the love of my family, my close friends and my cats and dog. I am going through the motions because of the love and because the animals need me.

I am not suicidal, I am a peeled baby and a bloody exhausted one at that.

I’m going to talk, are you listening?

A few weeks ago I got a letter through the door telling me I was due for an ESA reassessment. Part of me dreaded looking at the form and so I didn’t for a few days and allowed myself to feel panicked and because I allowed that feeling it passed. When I looked at it I was reminded that it was actually far simpler form than I remembered it to be. Don’t get me wrong, it’s a difficult form to fill in because you have to spill your guts out on to the pages but the form, to me at least, is simple. Or maybe that’s because way back in the day when I worked for DHSS you needed a degree just to open the envelope let alone fill it in.

I talked to my doctor about the supporting letter that I’d need and gave him photocopies of the pages of the form that I’d filled in. (I’ve now posted it and as I write this I’m panicking in case I’ve missed something important out – like my name and address and yes, I have just checked my copy to make sure that I have put it on there.) I digress.

I read the supporting letter that my GP wrote for me this morning before I had it copied and it had me in tears from the the first few lines. I choose the words I used to describe the effects that bipolar disorder has upon me and my life but I cannot choose the words that my GP chooses and it’s those that bring the stark reality of my illness and life into far too a sharp focus.

“She is significantly disabled by her condition.”

“When I first knew her she was particularly unstable, and I had real worries that she would commit suicide…with extremely vivid suicidal fantasies and a degree of derealisation and impulsivity.”

“She experiences very marked irritability that she manages by avoiding interaction with others unless it is very carefully planned and time limited.”

“She is certainly very intelligent, resourceful and insightful however, she copes only by carefully controlling the scope of her life and by reducing as far as she can activities that could result in loss of choice or control.”

“I continue to see her once or twice a month as she always teeters on the edge of instability. Her regular contact with the surgery has been helpful but it does also demonstrate how fragile she is.”

“She only just manages to cope with the necessary activities of daily living.”

“I would strongly recommend that she is not pushed in the direction of work, and that she is allowed to maintain the freedom necessary to make the hour by hour choices that enable her to cope with what is a very unpredictable and exhausting illness.”

Forms are simple, letters are easy to write but coping with the way it spells out your painful life letter isn’t.

So let’s stop with the Time to Change, Time to Talk, Heads Together fuckwitted mentality and really learn what life is really like for those who cope with the kind of shit that I live with every single bloody day.  Instead of harping on about how you’d like to help ask somebody to show you what they have put on the form to prove that they’re in the grip of a mental illness that they can’t escape from. Perhaps then things may change, people may really talk and, miracle of miracles, they may even begin to listen.

Waiting for Kafka

I am in constant preparation for the next bout of episodes. I always hope that episodes will be of the long kind as they’re much more gentle on my body and mind (though still incredibly destructive) but those are an increasingly distant memory. Unfortunately for me I rapid cycle and rarely do anything else and, at times, I move up a notch to the ultradian cycling that makes me hover over the act of committing suicide for far too long.

When I look as though I’m coping I’m not I’m making sure I have clean clothes, clean bedding, food in the freezer and a reasonably tidy home because when it all comes crashing down (as inevitably does) I am thrown into the canal of self destruct by the thug that is Bipolar Disorder.

I give away far less online (and in real life come to think about it) about what actually passes through my mind so my decline tends to go unnoticed and the ravages of my darkest and unnaturally brightest hours can pass people by.

I don’t think it helps that I’m naturally up beat and, some of you will find this hard to believe, good natured and even tempered. In periods of illness, particularly in time of crisis and episodes that peak and plunge with speed that light would be envious of I try to keep my cool and say nothing until I suddenly feel my back against a wall. If you’ve missed my invisible signals then the fierceness of my reaction will astound and terrify you.

Today is a bad day. I can’t concentrate on much and writing this is taking up time when I could be doing something else but there are things that I have to get out of my head in order to move forward even a small way. I have to keep on moving, I can’t move backwards, I won’t move backwards though Manic Depression will bully me into a corner and refuse to let me go far too often.

I’m going to have a mug of tea, look at my family tree and reassure myself that my home isn’t in a poor state and that with a little effort everything will be back in the vague place it belongs in before I go to bed tonight.

In the meantime I dwell on things, my mind pulls up obsessive thoughts that I would never dare share with anybody and I wait to be assaulted.

  • – 0 –

The reference to Kafka is, that apart from being my favourite writer, there was a study that concluded that reading his working can help improvements in cognitive functioning when learning new tasks and I am forever learning new ways to cope and/or manage the vile illness that has been forced upon me.

A list of a lot of things

I seem to spend half my life trying to keep up with the targets I set for myself and then being surprised when I don’t achieve them. You’d think that by now I would have learned that setting targets isn’t the way for me to go.

I’m a perfectionist and I demand far more perfection from myself than I do from other people. If you’re aiming for the stars when you’re at the bottom of the ocean you’ve not got a cat in hell chance of doing it. Sometimes I do of course but that’s usually stuff that’s not directly related to me.

My time management, which wasn’t very good to begin with, has gone downhill. Part of this is anxiety and compulsively checking switches and locks over and over and over again. My hands is glued to the door handle somedays.

Part of the downhillness of my time management is Ogden Nash. For those of you who don’t know, Ogden Nash is the best dog in the whole universe; he is beautiful, handsome, clever, funny and I always want one more minute with him and the cats. It’s hard to be on time for anything when you’re kissing four animals as you go even before you start on the checking and checking and checking.

People annoy me. I can’t count how many people gave me instructions about my new washing machine this week because I said it was the first automatic washing machine I’d had in 23 years. THEY HAVEN’T CHANGED IN ALL THAT TIME PEOPLE. I have spent the last week smiling through gritted teeth and trying not to punch people in the face.

One of the reasons I got so fed up with this “advice” was the way that people seemed to assume it was beyond my ability to work a washing machine. That some how my disability would prevent me from reading a leaflet and turning switches. I have bipolar disorder which does not affect my reading and it’s the easiest machine in the world to use. This whole attitude made me feel as though my ability to do anything was being removed from me and I was have dis-ability forced upon me.

One of the things is this list of a lot of things relates to the target I mentioned up there ⇑ somewhere. I was doing a series of posts about my Word of the Year (which is AWARE) and I’ve become acutely aware that doing a blog post every week is beyond me and not because I have little to say about it or that I’m incompetent.

Part of it is time management and the largest part of it is that there will always be me looking after me so that I come first and stay as stable as I can within the huge instability that bipolar disorder brings to my life.

I’m hoping I’m not going to get patted on the head or get a lot of head tilting (believe me I know you’re doing it even if you just tweet to me) when I make this post live and the next paragraph tells you why.

I’m not asking for help. I’m not asking for suggestions of how to manage my time better. I’m not asking for advice on how to better control OCD. I’m not looking for cute words about how wonderful my dog and cats are because I know this already.

I’m telling you that today is Time To Talk day but lets change that to Time To Listen. Don’t assume you’re making my day by taking time out of your precious life to say hello, say hello and then listen to what I have to say.

Simple.

Of Eric and Ogden

At the end of July I had a consultation with a psychiatrist that I’d know fn a long time. I was feeling manic and had done for nearly a year and it had stemmed from an attempt to go medication free. Being medication free is the Holy Grail for most people with mental health problems and it’s something I try to do far too much and each time I say I’ve learned my lesson. It happens again though because I’m desperate to be medication free because that would mean that I no longer had bipolar disorder.

There was a lack of decent communication between me and Eric which meant that, after a precautionary CT scan, a wild manic episode and a visit from a psychiatric nurse I found myself referred to a memory clinic. Luckily I’ve known Eric since he moved to the city and took up his post here and I’m also very good at standing my ground. Years of being an active mental health advocate have armed me well and believe me, if you’ve got Nick Ferrari to cut you off in an interview mid-sentence then you’re a bloody good advocate.

Today I went to see Eric. It’s a long journey – two buses each way – because it’s out on the far edges of town. It’s inconvenient but it’s a beautiful place and the staff are amazing. I was prepared to stand my ground and be firm but polite until I got what I needed which was a revision of my medication and a cancellation of the referral to the memory clinic.

We sat down in a comfortable room beside a small table in a way that our body language indicated both respect and a willingness to listen on both sides and listen we did.

I explained how I felt that, though he’d taken accurate notes at the last meeting, the situations were out of context or in the wrong context entirely. He explained that I’d not explained them as precisely as I thought I had and that what we’d ended up with was us being at cross purposes.

We reviewed the notes and amended them and then he asked me how I wanted my medication changed. We agreed on a crisis plan and decided to increase on of my medications and look towards a long, slow improvement so as to lay in a good foundation for what passes for stability.

It was a good meeting and worth the 3.5 hours it took to get there, have the meeting and get back home.

Ogden hasn’t been left that long for a long time and I was a little worried that he’d fret while I was out or feel that I’d left him. He was amazing and was very happy to see me. He’s since settled back down to his normal sleep 14 hours a day and I can’t be happier about it.

So – a potentially hard day turned out to be less difficult than I thought and I got the result I needed and made a good working relationship even better. My beautiful rescued dog moved forward a step in becoming more secure which is so wonderful. Tomorrow as a treat for us both we’re going for a long walk with a friend and her dog and watching a scour of the local harbour.

Facing up to life can be hard at times but at times it’s worth the while.

Desperate and deranged

I have had three days of hell. I know people describe days as “hell-like” a lot but when the hell is in your own mind and conspiring against you it really is bloody hellish.

I’ve tried to get across to my GP and a psychiatrist that I’ve been manic for over a year now and it began when I tried to reduce the medication I take. I do this from time to time as do a lot of people with mental health problems because the medication is seventy different kinds of foulness.

I became unstable last year, I don’t remember too much about the event that convinced me that I was manic but a friend does and described my behaviour as “out of character”. This concerned me and it was enough to get me back to my GP and back on proper drug doses again. I didn’t level out and there had to be a chat to my former consultant so that the dose could go up and I still haven’t levelled out.

There was a visit to a psychiatrist who told me he didn’t believe that I was hypomanic because of my behaviour (which is an exaggeration of my normal range of behaviour and mania distorts behaviour) and sent me off for a CT scan on my brain that came back all clear.

I had resigned myself to there being something wrong with my brain and there being some other explanation for my current run of weirdness but I think, in a way, I was really resurrecting an old hope that I didn’t have bipolar disorder after all. Heaven knows what I wanted it to be but some days anything would be better that the bipolar label.

On Tuesday my head exploded. I had an extreme manic episode of the kind I haven’t had for a few years. My mind races so fast that eventually I can’t speak and I want to die just to stop the pain. If anybody ever tells you that mania is purely a physical thing then don’t believe them – I still have the headache and it’s Thursday evening. I managed to talk to a doctor and the two guys who hold Lasting Power of Attorney for me and I don’t think I made much sense to any of them.

I felt desperate and by the time I saw a GP on Tuesday evening I was exhausted and I’m still pretty tired. As you age mania burdens you physically in ways that it doesn’t when you’re younger; the wild energy eats away at your body and soul destroying your mind for at least a while. It is devastating.

Yesterday I spoke to a triage nurse on the phone and I was at the desperate and begging stage. All I wanted was to be both unconscious and yet well at the same time. Mania has me wanting to live with the same kind of savageness that makes me want to die.

I’ve slept and as my energy has became more usable I’ve been able to cook without setting myself or the flat on fire and because my energy was usable last week at least home is largely clean and tidy. Except for the bathroom, I’m never manic enough to want to clean the bathroom.

Today I saw a psychiatric nurse who came to see me in my own home to do an assessment. He’s confident I don’t need hospital or sectioning and that a medication review is the way forward but it’s not going to be as quick as I want it to be. There was a team meeting this afternoon where I will have been a topic of discussion and someone will write to me and tell me what will happen. So any solution is at least a week away from starting and it’s going to be a long time to wait.

I’m angry that I can’t have a quicker solution but when mental health services have been stripped to the bone (and they weren’t exactly fleshy bodies to begin with) then the government decides to graciously sling some money at them that doesn’t even get to fund people like me it’s a pointless anger.

There is no safety net you know, it’s just two pieces of string knotted in the middle – the emperor’s new clothes of medicine.

Equality and the doctor’s receptionist

This isn’t a terribly coherent post, I just really need to rant or else I’d be tempted to lamp somebody.

I’m a bit angry and I’ve really, really, really bit my tongue hard during a phone conversation I had about half an hour ago.

I have this pain in my left breast and it’s not in one particular part so for a couple of weeks I’ve been thinking nothing of it but it won’t go away and it doesn’t feel muscular so I rang my GP’s surgery to get an appointment.

It’s constantly drummed into us by health professionals that it’s important to get bumps, lumps and twinges checked out when they’re in your breasts (and testicles for men of course) and so that’s why I was ringing.

My GP is on holiday and he’s not back until the day I go away so there’s no way he could ring me back and give me some reassurance or let me pop over and get checked out.

I have two choices it seems – I either ring up at 8.30 tomorrow and see if I win the appointment lottery or I talk to the on call doctor today and be treated like an emergency. I can’t ring up tomorrow because my memory is shot to pieces and if I’m out with the dog I have nothing to make a note on and will have no idea of what time I’m supposed to be there if I’m lucky enough to get an appointment. If.

I asked for a note to be put on my doctor’s screen so when he gets back he can see it because I’m going to have to talk to him about it as, since he’s my key doctor, he looks after the whole of me not just the mental health bit.

This confused the receptionist big time because she wasn’t convinced that she could leave a note for my doctor and ask an on call doctor to ring me. I persuaded her that since the system for appointments etc. was inadequate and that I don’t fit into the options open to me then I needed my GP to get the message and, whether this pain is an emergency or not, I need to talk to somebody about it.

Then the defensive language came – you know the stuff. “I’m just doing my job.” “I can’t change the rules.” “I’m treating everybody equally.”

I wanted to scream at her. The system doesn’t treat everybody equally – it doesn’t leave room for people like me who have complex problems and live alone but it will give priority to physically disabled people but if the disability isn’t obvious then we’re expected to sit in the corner and play with the crayons.

I asked her to feed back that the system is inflexible and inadequate and that I’m sure I’m not the only person that feels that way. Surprise, surprise – I’m not the only one. Will she feed it back? No, because that would be mean going to someone she feels is powerful (and therefore gets to hide behind their power) and acknowledging that an imperfect and inadequate system may seem to promote equality but it actually discriminates.

There is a glass ceiling when it comes to disability and those of us with mental health problems or invisible and/or undiagnosed (I’m trying to handle the news that there may be something wrong with my brain too) hit that ceiling quite early on. It’s as if we’ve brought it on ourselves and that any anger we feel is either a result of our mental health or ingratitude when really it’s more about a desire not to be treated like a pile of shit.

How to pronounce ciabatta, a rant & phoning the BBC while asleep

I’ve got listings on a website to update but I won’t be able to settle down and do them until I’ve written. I have little idea of what I need to say beyond the opening paragraph but I know I have something to say – whether it’s meaningful or not is unimportant.

I’m wondering if I’m setting off on a manic cycle again and I think I may well be is my ex’s pronunciation of “ciabatta”. I used to tell him that see-a-batta was incorrect and that the “I” made the “c” soft therefore the pronunciation was “cha-bat-ta” but he’d have none of it. His response to my correction was the same every single time – he’d had a couple of terms in a private school so that made him more knowledgeable than me (untrue) even though I took Italian lessons in my 20s.

Not an ugly duckling website

Anyway, now that’s out of the way I shall tell you about the letter I got from the mental health trust telling me about the appointment I’ve got with them next week.

I was a bit shocked when I read it because even though the trust purports to provide mental health care the way the letter is written is distinctly uncaring.

It didn’t name the person I was going to see even though a telephone conversation recently and a referral from my GP made it clear that I have far too a complicated “picture” to be seen by a junior doctor. It didn’t even say that I was going to see a doctor just a “mental health practitioner”. What kind of practitioner? Consultant? Junior psychiatrist? Nurse? Occupational health? Student?

I rang and asked who I was going to see and they refused to tell me on the grounds that it may change at the last minute. I reminded them that I had to take two buses to the location which was potentially three hours travelling (for an appointment within a reasonably small city!) and I had a right to know who I was going to see. I eventually got it out of her and I was happy with the person who she said it was and if it changes at the last minute then I’ll have to deal with that if it happens. I won’t cope very well with it but if I want a medication review then I have to do.

I suggested that the letter should name a person with a rider that says it could change at the last minute to be asked, “Who would that benefit?” I gave her the tired spiel about anxiety and enabling people mental health problems to feel empowered and valued but apparently the staff are too busy for all that. Or at least the clerical staff are anyway.

The bloke I’m seeing (fingers crossed) is a great person and I will raise it with him when I’ve finished bending his ear and asking for more drugs and he will listen to me. Why am I so sure he’ll listen to me? He will because I told him of how I’d made a phone call in my sleep and had no memory of it when my call was returned and he told me that when he was a student he’d rang the BBC in his sleep (his brother witnessed it) and asked to speak to his mother who didn’t work for the BBC…