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.

A sense of relief, rebound stress and balloons

In May I had to have a Work Capability Assessment (WCA) to see if I was still eligible to remain in the Support Group of Employment Support Allowance (ESA).

I was one of the last people to be moved across to ESA and filling in the WCA form 2.5 years ago was an stressful experience.

I have a severe form of Bipolar Disorder and my doctor often refers to my fragility and lack of stability. He does this when I go for my appointments so we both know exactly how I am. I visit him at least once every three weeks and at one point I was there every day so he could keep me alive.

I finally got a letter saying I was being put straight into the Support Group without having a face to face assessment. This rarely happens and I was relieved to say the list.

This year I had to be reassessed and, no matter how much I told myself that I’d get the same result again, I was still terrified in case I was put into the Work Related Group even though my illness had deteriorated.

On both occasions my doctor has written letters of support and written starkly of how I would be unlikely to survive being forced back into work. In short he was saying I’d kill myself because I wouldn’t be able to cope.

I’m not dreading the next assessment quite so much because it’s highly unlikely I won’t get the result I need but I am hoping it’s at least 2.5 years ago.

I cried a lot the day I got the letter and I cried even more the next day. On the third day I was hit by rebound stress. All the feeling and crappy feelings that I’d been holding on to for a couple of months sprung back on me and hit me squarely in the face. I had a very miserable few days and yes, more tears but now there is a sense of calm. I don’t wake up every morning wondering if this will be the day I get the judgement that may not go my way.

This week has been the Balloon Fiesta and it’s been a lovely weekend. The only thing that mars it is the two firework displays they have. My dog is terrified of loud noises and he barks until they stop and needs a great deal of comfort but we get there.

The balloons were fantastic as usual and I’ve taken hundreds of photos yet again. It’s surprising how many photos turn out looking exactly the same when it comes to balloons – or maybe it isn’t.

Anyway, this past week has been stressful and I’ve had to try very hard to get through it but that’s the thing, if I keep trying I eventually get there.

Twitter, lime curd and a map of Spitalfields

I’ve been reviewing my use of Twitter regularly of late. I’ve been logging out, moving my apps to a distant screen and turning off notifications because I’ve come to the erroneous conclusion that Twitter is bad for me and it fuels my mania.

After a few days with little input into Twitter but a lot of lurking I started to chat to people but only first thing in the morning and in the evening and only for a few tweets. This, because I’m a gobby mare, increased today and I realised that there was a bout of mania building up in me.

The light bulb moment occurred and I realised that Twitter doesn’t maake me manic nor does it fuel my mania if I ration myself but it does give me a good indicator of a manic episode in the making.

It turned out to be right because at 9.30 tonight I was clearing up after an hour of making lime curd. It’s not difficult but it is messy and I really should have had my feet up drinking tea and annoying everybody on social media.

I have before me a map of Spitalfields. I’m going to be in London in October for a day trip so I’m going to take photos of the Spitalfields Roundels. I took a photo of one of them last time I was over that way thinking it was a manhole cover and now I’ve found out what they are I want to take photos of the whole set. Thus the map in front of me trying to plot where the locations are even though it’s about two months away.

Meanwhile I am dreaming about the curry I’ll have on Brick Lane, the place where all the curry houses  are endorsed by famous people. Magical.

Time, tasks & all that shit

Time is very difficult for me. I’m not sure if it’s the bipolar being bizarre or the compulsion in OCD chaining me to a radiator in some strange place.

I have to do certain things my a certain time in the day. I can only go out on a morning on rare occasions which is a bit of a bugger because my GP appointments are scheduled for 9.00 am at the moment.

I have to do certain things in the morning or they don’t get done at all. They may get done the next day but equally they may not.

Switching the washing machine on is a morning thing. Ironing is a morning thing. Changing the bed starts off in the morning and goes on in stages until early evening. Baking bread can happen at any time but when I do it it throws everything else out of the window.

I miss out on a lot of things because the bipolar compulsion keeps me inside but, to be honest, a lot of it I’d avoid if I wasn’t being so pissy about not having a choice.

This week has been difficult. My eating has been especially disordered and I’ve eaten far too much fat. I’ve been sub manic; energy has been both usable and un-coordinated and as a result I’ve spent the whole week confused and not coping well.

Today I’ve done a lot but now the flat is disorganised again. I truly do not know how it happens but it’s certainly a bag of shite.

RIP Amy Buel, thanks for all the hope

I read about Project Semicolon a year or two ago and the purpose of it really struck a chord with me.

It was inspired, if that’s the right word, by the death of Amy Bluel’s father. She wanted to honour his death after he took his own life which an inspiring act in itself. Project Semicolon was the result of tragedy and I’m sure it has saved more than one family from a similar tragedy.

I have had to fight the extreme urge to die too many times in my life. I used to scare my GP as he listened to the things I said to him. I had to get my medication on a daily basis, friends in the local police beat management team took my sharp knives until I could be trusted with them again and I hung on to life even when my grip on reality was at its weakest.

I recovered from that period of depression eventually and I began to gain some stability in my life.

Then the ultra manic episodes began and, during a very intense 90 minutes or so, I had to argue with my own brain just to stay alive. It would shout at me to die, to stop the pain and I would shout back that I knew it would pass if I just held on 10 minutes longer.

I still have those episodes and I’m exhausted for days after they’ve happened. Mental illness is so physical it literally hurts.

The core of Project Semicolon is that “the semicolon represents the continuation of life after struggling with thoughts of suicide and death.”

We could have chosen to stop but we chose to keep going.

I have my semicolon tattoo on my right wrist. During my extreme episodes I look at it and tell myself what it stands for and, alongside with the remembered support of four people I pass successfully through the episodes. Bipolar disorder hasn’t got me yet.

I read a web page today that has the story that Amy Buel took her own life on March 23 this year. I am overcome with sorrow that the woman who gave me so much hope and support has been beaten to death by depression.

Amy and I never spoke, we never exchanged texts and she had no idea I was in this world but we were linked by the fragile thread that all people who experience mental illness are.

I end this with Amy’s own words:

“Just don’t let them forget why I was here because that’s what’s important.”

 

Let’s count some blessings…

I woke up this morning a little whizzy but with usable energy and so I had no reason to suppose that today would be a bad day.

I baked bread and while I was waiting for the prove I knocked out a batch of triple chocolate chip cookies. Both of which are easy peasy for me and I now have my bread and sweet baking drawer in freezer filled to the brim.

Then halfway through the washing up I started shaking. This is not a good sign and is a herald of a real soar to the top of my scale of mania. I was worried that it would become a “storm” episode that ends in self harm but luckily it didn’t.

I sent a text to a friend saying to ignore me if I sent texts about being manic today and, of course, shot myself in the foot with that. I didn’t want to overload someone who has more than enough on their plate as it is and didn’t want to disturb them when I really wanted a hug from them. I am an absolute idiot at times.

So given all this are there any blessings to my day? Of course they are and they are listed below.

  • Finn has met Moley and Kenneth and it didn’t end in tears.
  • Ogden has fallen in love with Finn and hasn’t stolen his food. Yet.
  • I got back to 1797 on one branch of my family tree.
  • I realised I needed to eat and bought a takeaway without feeling guilty.
  • I remembered to do all the things I need to do to lessen an episode of mania and that’s no mean feat for me even if it was only a partial success.
  • I had my homemade sausage for breakfast.
  • Finn cuddled up on the bed with me and has realised that I’m his mum.

Blessings indeed.

Limitations, six (now seven) and three

One thing has become very clear this past week or so and that is my previous limitations have changed. My ability to do stuff, whatever the stuff is, has lessened of late and I have to accept this. It may be a temporary thing or it may be a permanent thing but, either way, I have to deal with it.

I have a list that has guided my way of living for around 20 years. They were given to me by a consultant psychiatrist to try as an “experiment” because he knew damn well that if he told me it was a good set of guidelines to live by then I wouldn’t do them. The whole of our professional relationship was, it seems, based on a series of dares on his part and challenges to his thinking on my part but that is another story.

The list he gave me goes, in no particular order

  • Be Safe
  • Eat
  • Sleep
  • Medication
  • Meditation
  • Mindfulness

The first one happens automatically if I do the other five and most days I manage to do them all. Not necessarily well but I do them and that’s a big achievement.

I now have to add “Know Your Limitations” to the list and it’s incredibly difficult. I’m the person who worked 16 hour days without batting an eyelid, the one who could walk 25 miles without much of a sweat and not a blister to be seen, the one who faced down thugs in the pub I ran when my husband hid, quite literally, under the counter and I am now a person of limitations.

There is, luckily, no puzzling over where to start. I have this very sensible friend who has also been my kind of life coach for the past 10 years. He’s really good at it and has no knowledge of how poor mental health works so his suggestions are entirely practical and, for the most part, workable.

He has had me writing a daily ToDo list for a long time. I’ll write tomorrow’s list tonight and I know what I need to do so my list will look like this –

  • Turn the washing machine on
  • Hang the laundry up when the wash finishes
  • Have a nice bowl of fruit salad sat on the step with Ogden

The trick, and it’s a trick worth learning, is to write only three things on a ToDo list and make the final one a nice one. Never put a thing that you do routinely on a ToDo list; those things don’t need to go on one and they just make a list longer. Rarely will I be unable to finish a list with only three things on it. Notice I’ve broken down my laundry into two of the things and the third one is a treat. I will complete that list tomorrow and, here’s the really good bit, everything I do after that will be extra and we all know how good doing extra things feels.

The burn, and there is a burn now, is that I’ll have to limit the extra things. In order to work out how long things will take me and how important they are I’ll have to write them down because that gives me a sense of reality and not some random things running around my mind bumping into one another.

The guidelines will be my list of seven and how I’ll execute them will be the list of three. Tonight I need to do something that will help me eat properly tomorrow so I’m going to wash and slice the potatoes I harvested this morning. I’ll also slice the onion I harvested yesterday and they’ll form a meal. Preparation is a good thing as long as it doesn’t wear me out. I’ll cook sous vide tomorrow so I’ll eat well with a minimum of fuss.

So what else can I do to make things better? I’m going to spend less time on Twitter. I’m finding it quite hard going at the moment so it’s a welcome break and there’s lots of politics on my Facebook so I’ll get my fix there. I’m going to stop watching soaps – they’re moving wallpaper and light on the mind but they take up time I can be using to do something relaxing and, as I’m relaxing more I’m reading more and that makes me happy. There will be days when I can’t read but those are the days that Ogden will get longer walks and then he’ll be even happier.

Changes, my life is full of changes. Bipolar disorder rules my life with the incessant changes it throws at me and management of it is dodging, ducking, diving and changing at a rate I can’t cope with but accepting my limitations are part of that change, at least for the time being, gives me time and space to be safe and that’s good, really good.

On disordered eating

When I first saw the consultant whose care I was under for about a decade we talked about what I wanted or hoped to gain from our time together.

He was not a psychiatrist who believed that he was just there to write prescriptions and make hospital admissions, he believed that he was there to help people and so by asking me what I hoped to gain from our professional relationship gave me hope.

My immediate response was that I wanted to know myself better. I wanted to be less afraid of the insight that I had into my illness and to learn how to manage that fear. I wanted to shine some light on my eating habits and why they had always been so flaky.

We talked at length about the way I approached food.

I was anorectic from an early age. I had no interest in food and didn’t want to eat much. I remember having school dinners for a week and not being able to finish the meals that they gave me. On the last day of what felt like a very long week one of the teachers told me I was ungrateful and that I would finish the meal I’d been given even if it took all day. It did.

I was a skinny child, a skinny teenager, a skinny adult.

I felt and looked uncomfortable in my own skin. I was told that if I “made the most of myself” then I could be quite pretty. I was never one for fitting in to moulds and have broken just about every one that anybody has tried to shove me into.

Jonathan (the psychiatrist) and I talked about my approach to food and most of it was that I didn’t like it much and that I was convinced that I was going to choke on it. Even now I’m what you would call a fussy eater and, especially since my dangly bit at the back of my throat was lasered out, I’m even more scared that I will choke.

I don’t eat regularly. I can’t eat regularly. Sometimes I will eat breakfast at the right time then graze through the day never thinking that if I just made a meal then I could sit down and eat healthily. I have a timer on my phone that tells me when to eat and today, like a lot of other days, I haven’t ignored it but the time has gone by and I’ve had ginger cake and crisps instead.

Some days I eat all day and others I barely eat at all. I don’t mind not eating because sooner or later the pain of an empty stomach goes and then I forget how long it is since I’ve eaten.

I have sort of freaky eating that I don’t often mention but it usually involves dry frying pickled fruit until it caramelises and having it with cold cuts. I don’t know whether it’s really food concocting of a bizarre kind or whether I’m just ahead of my time when it comes to food. If hipsters start dry frying pickled fruit just remember that I started the trend.

It is all linked with my mental health of course. It is, like just about everything else in my life, fueled and fuels bipolar disorder. It is, like the bipolar disorder, something that I’m better off accepting but it’s one of those things that I have trouble with.

The trouble with food is that you have to eat it. Giving up drink and drugs was different because you’re not obliged to do them but you really have to eat.

It’s a long and shitty roundabout ride.

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.