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.

I don’t do crossroads, I do corners

After what seems to be years, but in reality is just a few months, I finally have finally seemed to turn a corner. Getting to crossroads tends to suggest two options from which to choose but I’ve never been in that position, I’ve always been on the right side of the path but sometimes I turn round the wrong corners.

Recent crises have left me feeling fragmented and helpless and I don’t cope particularly well with either state. I have had unfailing support from a small circle of friends and family who have helped me whether they knew it or not.

I knew I’d turned a corner when I did some ironing today and that I knew when to stop. Too many times I tell myself that one more item won’t matter but it usually does mean the difference between tears or tantrums and sometimes both.

I got the hoover out and did the living room and the kitchen and that felt as though I’d regained a little more control over my life. I don’t like doing housework but when it’s as tidy as it can be it’s a long way of the chaos that it can be in a matter of days.

I’ve not done too well on the eating side of things but I did at least stop for a cheese sandwich at lunchtime and there will be fish finger, chips and peas for tea. Not brilliant but not disastrous either.

I’ve just realised that from starting the above paragraph and finishing it I came to the conclusion that I’ve done quite well. It becomes more obvious how well I have managed when I see things on a page. It’s very important for me to write things down. When I post my blog it doesn’t matter if it never gets read by anyone else (though people do read it and identify with it) but I write regardless because it clears my head and carves a path through the debris and detritus that’s hanging around my brain.

The most important thing that I’ve learned in these weeks and months is that acceptance isn’t a final stage. I accept that I have an illness that makes a huge impact on my life and that impact could, and probably will, make me become more severely affected. Bipolar disorder doesn’t go away and unless there is a miracle cure then how I am now is the way I will always  be and I have to live with.

I will never stop railing against it. I will never stop exhausting myself or burning myself into the ground just by doing the normal kind of things that normal kind of people do. I will always do the outrageous thing than the safe thing. I will always strive to get to a stage where I cope with this bloody awful illness instead of just managing it hour by bloody hour.

I’m not any of the descriptions that people trot out in memes. I haven’t got a mental health problem because I’m a strong person who’s been fighting too long, I’m a strong person with a mental health problem and I’m living with it not fighting it. There are days when I’m fed up and I can’t imagine living this life a moment longer but I am the semicolon and not the full stop; I know that there is a life for me if I just pause. It is not the life that 14 year old me imagined for herself but it hasn’t been a bad life, it’s been an interesting life. There’s been lots of hilarious moments, too many stupid ones and so many outrageous ones that I’ve lost count.

That life will continue. I am 59 this year and I have been living with bipolar since early adolescence – onset at 13 or 14, diagnosable at 16 or 17 but not diagnosed until I was until I was 36. I am, at times, as old as 27 in my head but I’m usually a reckless 18.

I have many talents though I would dearly love to improve both my writing and my photography because even though I’ve had pieces of each published professionally I don’t think that you ever get as good as you can be. I will leave you with the quote below which I believe the coach of the England squad said in a Rugby World Cup about how the team strived to win.

The greatest sin you can ever commit is to grow old without knowing just how good you could have been.

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.

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.

Moving on in more ways than one…

It’s ten days since I had the big chat with my GP and knew that my life had to change. Bipolar Disorder is a hard task master and at times it chains me to the wall and leaves me for dead.

I am still mourning the loss of overnight stays away but that is tempered a little by the knowledge that I can still have days away and see places that I haven’t yet. There’s lots of cemeteries that I have yet to see and many blue plaques to take photographs of.

I have come to realise over the past few weeks that my bouts of psychosis haven’t happened for a long time which means that, even though I feel as though I don’t cope with stress, I’m managing it to the point where the psychosis has subsided for a while.

I talked to a friend yesterday about all that has been going on. We had the conversation with each other that you usually wish you’d had when you’re at a close friend’s funeral. It was good to say the things that matter and I’ve felt calmer since. There are fewer tears today; there may be a flood of them again tomorrow but today I have dry eyes.

I got a standardised email that I felt was rather rude and challenged the person who sent it. She felt it wasn’t rude or patronising and didn’t think a sign off at the bottom was necessary. An angry tweet that I made on the public timeline led her to block me on her personal account and tweet in a way that I was totally responsible for her pettiness and thoughtlessness.

This is a prime example of why I don’t groups – they are basically cliques of people who cling together for whatever reason. They think that they’d be the cool kids if they were back at school but they’re the ones who used to gaze longingly at the cool kids while yearning to be part of the gang.

I can’t do it. I’m me and I’m not interested in become part of a “gang” that sticks together like a tin of cling peaches. Remind me of this next time I think about joining a group, tie me up if necessary but don’t let me do it!

Washing wonders, sadness and getting on with it

A week ago today I got my first automatic washing machine in 23 years. Since then I’ve worked its electric fingers to the bone (I’ve lost count of the loads I’ve fed it but we’re talking 16+) and it’s done it all without a complaint.

Last Saturday I had no clean jeans in my wardrobe and the pair I was wearing I’d had on for a week. I had two clean blouses/shirts, no clean socks and I was running out of briefs (or knickers/shreddies – you choose). I had just put clean bedding on the bed and only had that because a friend had washed it for me.

I’ve had a twin tub for a long time but they are such hard work. You have to swap the laundry from tub to spinner and it never seems to be quite clean. I run out of energy doing this even if it’s only a few loads because it bleeds me dry. So my laundry pile got higher and higher and I felt that I would never be free from it.

Today I don’t have a laundry pile. Between the new machine, my alien dryer, clothes horses and the odd radiator it’s all done and mostly dried. Most of it is ironed too – not because I want to do it but because ironed clothes are easier on the skin when you have eczema.

My kitchen is tidier because it’s new and not falling apart around me so I feel that’s two  things I have more control of.

I still have no control over the rapid cycling, the continued physical tiredness but unable to feel rested because of an over-stimulated, never resting mind. Because of this my eating habits are dire and  I have to accept that this is probably always going to be the way. I’m not giving up on them but having bipolar disorder to this degree means that I either accept my limitations now or being driven half (or closer) to suicide by driving myself too hard.

Self-neglect is both a symptom and an outcome.

The sadness in today comes via a supporter of a vile politician who is entitled, quite rightly, to her own views but when it comes to supporting discrimination against people because of their religion then it’s time to say goodbye to them. I’ve withdrawn quietly from their lives and, as we’ve never met in real life and she’s an ocean away, there will be no confrontation.

And so on we move.