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.

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!

Grieving for the end of an era…

Anyone who has experienced the sudden loss of a person that they love will know how grief feels.

They will know the feeling of waking each day and being in whatever their range of normality is and then sudden remembrance that the person is gone.

That is how I’m waking each day and yet I haven’t lost anybody. My family and friends are all intact and in their rightful places – none of them have been lost to me.

It’s definitely a grieving because I’m doing that thing – a memory comes upon you and you smile just as the gut wrenching sorrow kicks you in the heart and it is your life that seems to have ended.

Except my smiles are not linked to memories and the gut wrenching kicks to my heart appear to be a spiteful and deadly illness attacking me once again.

I can’t eat much – I’m getting hungry but it’s hard to eat and the hunger fades as quickly as it arrives. I drink tea and coffee and have enough food to keep ticking over and my the figures on my scales are lower every time I stand on them. It’s not known as the heartbreak diet for nothing.

I’ve bought a gorgeous new knife and I’ve yet to use it because it would feel like a glorious celebration amidst a deep sorrow. I don’t want it to be the comedian at the funeral.

I am grieving yet no-one is lost to me.

Last month I spent time away then came back to three weeks of chaos while my kitchen was refurbished. My dog was incredibly stressed out and with a toe that seemed certain to be amputated.

I was becoming increasing unstable (damn you bipolar disorder, damn you) and had made the decision to take breaks away from my life but not to travel and have overnight stays for the next few years. It’s a big change but one I need to make. I’m looking forward to the first group of trips I’m doing in May and one of the days I’m visiting at least one place I’ve never visited before. Ogden will still get his boy time with Rob and that keeps him happy.

I am revoking the Lasting Power of Attorney which was put in place seven years ago when I was incapable of looking after myself. Today I’m still not that capable when it comes to coping but I manage my illness just enough to keep me floating.

I have stopped doing the voluntary work that I’ve been doing (writing about charities for a community website) which is both sad and a relief. Writing is hard work and writing about charities is draining.

The grief is about leaving a part of my life behind and starting a different part. I’m moving away from what was once positive and has become less so and adapting and shaping my life into what I need it to be in order to stay sort of well and not very ill.

I am, in a way, grieving for me. I am grieving for my life and have yet to be excited about the new one. I’m going to write in big letters on a whiteboard “YOU WILL BE ABLE TO TAKE MORE PHOTOS AND WRITE MORE DRIVEL.”

Onwards with trepidation, anxiety but hope.

The Co-op, Council, Citizens Advice Bureau & the consequences

This blog is about something that happened a long time ago but I still feel the effects from it even now and it is something I’ll never stop being angry about. It’s not about hurt feelings or dismissive behaviour it’s about the stripping of dignity under the guise of banking policy and voluntary work.

When I lived in Brislington (a bloody awful part of Bristol that pretends to be nice) I was subject to antisocial behaviour from a group of neighbours. It stemmed from the incident where I refused to lend one of them £10 on the night I moved in and they decided that I was a posh snob who had loads of money.

I don’t speak with a local accent but that doesn’t make me posh anymore than the jobs that I did when I was working. Being a PA doesn’t make you posh, being a publican doesn’t make you posh and working as the manager of a shop doesn’t make you posh it just means that you’ve got somewhere. None of those jobs necessarily attract high salaries but obviously those people thought they did.

It started with small things – I’d go down to the laundry at my allotted time to find the machines full. I’d empty the machines to do my laundry and the person concerned would come down and threaten me. I’d speak to the caretaker who always promised to speak to her but never did and then I’d complain to the council who told me I had to try harder to fit in with the neighbourhood.

Shortly after I moved in I was diagnosed with Manic Depression (which has since changed its name to Bipolar Disorder) and then I really began to struggle.

My bank account (with the Co-operative Bank) didn’t allow direct debits and a lot of the work I did was via an agency which meant that in the lean times (and they were regular but that’s another story) I had to sign on and claim housing benefit. If I couldn’t get to the housing office to pay my rent then it disappeared on food and household bills. I was getting more and more into debt each month.

When I opened my account with the Co-operative Bank I specifically told them that under no circumstances should they offer me loans or credit cards because I would take them, mismanage them and become very ill.

They ignored me.

As it became obvious I was struggling their helping hand came in the form of a credit card which had a limit of £750 and thankfully this didn’t increase in the time that I had it. When it became even more obvious that I was struggling harder they insisted that I take out a bank loan to consolidate my debts, paid it into my account at the wrong time of the month and then blamed me for taking money out to buy food, bus fares and to look after my two cats.

The bank told me that my debt was too large to let go (£1,500) and it would always be there to be reclaimed. When my financial adviser spoke to them about it when I registered Lasting Power of Attorney they said they had no trace of the debt.

Meanwhile the situation with my neighbours was escalating. Regularly I returned from work to be showered with a hosepipe or to find piles of rotting food outside my door. In the evenings their kids (some of the in their late teens) would try to see through the curtains of my bedsit (I had to keep them permanently closed by this time) to see if they could see me in my bed. They stole my post and read it to me as I walked past (the police said it was probably just a joke) and I had to pay to have it diverted which cost me money I didn’t have.

By this time I had a credit card I couldn’t pay off, a loan I couldn’t begin to make payments on and I was 10 weeks in arrears on my rent. I was on the point of being evicted and the housing officers visibly made fun of me when I sat in their office and cried whilst begging for help.

A new manager to the area heard this going on one day and took me into his office. I poured my soul out onto his desk and he listened to me carefully. He immediately wrote off my rent debt and four days later I was moving into the flat where I have lived happily for 16 years.

The next step was to acknowledge my illness and then talk to the bank about my debt. When I asked to see someone to talk things over the assistant announced to the world that they weren’t going to give me anymore money. She cut up my cheque book and debit card and told me that I’d have to go to the Citizens Advice Bureau (CAB) for a financial statement and until then they would allow me only what they think I could reasonably live on. I sometimes earned £150 a week and the bank would let me have £45 which was barely enough to keep me alive.

The CAB made a big mess of things. They left off my electricity and water bills off the financial statement and made a big fuss when I said I needed a new one. (Apparently I was asking too much of volunteers to get it right!) My electricity bills stopped arriving at home and, as I was moving on to a prepay meter, it was essential to see them. The CAB had told them, when I had given them permission to speak SWEB to ask them to freeze my debt for a while, that I was incapable of looking after my affairs and to send the bills to them. AS IF THAT WAS A SOLUTION TO ANYTHING.

It came as no surprise that shortly after that I crashed and burned and claimed Incapacity Benefit as a short term thing. Sixteen years later I live with the knowledge that I will never work again and the people who were supposed to help made things worse.

The CAB will tell you how wonderful they are but they will not disclose how many people say how wonderful they aren’t. The Co-operative Bank will claim to be ethical but they don’t understand that ethics is as much about treating customers with dignity as it is about not funding arms dealers. The police in the neighbourhood allowed an ill man to be beaten to death and his body set on fire as his pleas re his neighbours went unheard also. The council still don’t get their act together with neighbours and disputes. Nothing has changed.

I’m now in a safe place in all senses of the word safe but how many people aren’t?

One thing at a time, living without chocolate & being less manic

I have this great friend who acts as my soundboard and does this kind of motivation coach  (I know, it sounds awful) thing with me. After a five or six years of not being in touch I rang him because my life was in mess and I wanted to talk about somebody taking over my finances and we eventually set up a registered Lasting Power of Attorney.

Once that set up he got me to look at the way I spent money, what I spent it on, how many times a week I visited a cash point, how often I used a debit card and it opened my eyes to just how messy things had got.

Coins & notes

He then suggested that I opened an ISA and began saving. I was skeptical about doing that because I have a low income and didn’t think that there was room in my budget for saving but, as it was issued as a sort of challenge, I took it up. I started with a tiny amount and eventually built it up so that I have a bit of fall back money now and I no longer worry about money.

I’ve always had a problem in keeping things tidy around home. My head is so chaotic that I find it difficult just to keep things less oppressive and dreamed of having an uncluttered flat. A psychiatric nurse I once saw for Cognitive Behaviour Therapy said I had to set targets. He suggested that I should do hoovering once a week at a time when I couldn’t see the floor. I don’t think he got the idea that living in chaos needs very  small steps to get out of that chaos.

Once I no longer had anxiety about money I found that my mind was freed a little and I could assess what level of chaos I could live with and was encouraged to not exceed that level. I don’t often exceed that level these days, if at all, and it’s freed up time to let me bake my own bread and, when I can get my head together, cook fabulous food.

As mentioned in a previous blog I’ve had an appointment with a consultant psychiatrist who thought that what I’d assumed is an extreme escalation of bipolar disorder could actually be brain damage (I can date the change in behaviour quite accurately) and I’m waiting for a CT scan.

The consultant asked me if I had high cholesterol levels (6.2 – 6.8 typical but has been as high as 7.1) and if I take statins and I think he was hinting that there may have been a mini stroke. That consultation changed things for me.

I haven’t had chocolate or crisps since that day and as I’m losing my sweet tooth I can’t bear the taste of diet coke (overwhelmingly sweet!) and I’m now losing my taste for diet lemonade. I’m not even drinking low sugar squash, tea or coffee very much and so I’m drinking loads of water. (Try leaving a glass by the sink and instead of boiling the kettle pour a glass of water – it’s good for your body.) My cholesterol levels, measured after three weeks without chocolate or crisps came out as 5.1!

I’m less manic than I was. I think this is partly because I know the extreme behaviour isn’t necessarily bipolar related and I’m learning how to temper it. As a result I’m not feeding the mania and perhaps some of it was sugar fuelled – who knows?

There’s a little bit of a weight loss – 7lbs – but a long way to go. It’s a small start but a start anyway.

The moral of the story is (and I will repeat this often and regularly) is start on any part of your life that you want to change and concentrate on that. Sooner or later there will be time and energy to look at another area of your life. Some changes will come as a consequence of the first change but things will change. Baby steps are still steps and life, hopefully, will improve.

The biggest lesson I’ve learned is that the people in the know (the medics, the psychiatrists etc., the professionals) don’t always know how to enable you to move your life forward. Being advised to take small steps is great advice but backed up with the idea that to concentrate on just one area of your life is better.

Now excuse me, I’m off to do hoovering for the second time this week.

Just when you thought I’d shut up…

StarlingI haven’t written here for a while because I’ve been a bit busy.

I have a voluntary job which I can do when I want and to what extent I want. I write articles about charities for a community website and I’m the one in the driving seat. This week I’ve been writing for that and also preparing to go away for a few days.

The going away is actually quite a big thing for me. Eight years ago I was able to manage a day trip and aspired to spending one night away from home and now I do two with ease. Next month it will be three nights away and, though it sounds like something small, it’s huge for me.

I’ve got a nice social life over in Bromley that’s built up over the years and I always look forward to catching up with people. If I get the chance I go to neighbouring towns and villages to look at churches and graveyards – there’s a lot of history just waiting to be seen. It doesn’t sound like a riotously exciting time but for me it’s wonderful.

What has also been keeping me a little preoccupied this week is the thought of my cholesterol levels. I had a blood test last week and so I’m just waiting for the results. Last month, after seeing the consultant psychiatrist and him having vaguely mentioned cholesterol levels, I decided to make a concerted effort to reduce the amount of fat and sugar in my diet.

I got weighed this morning (yes I know weighing yourself isn’t a perfect indicator of weight loss so don’t shout at me) and I’ve lost 7lbs. My bras are fitting better and I’m not having an sugar cravings (okay, small ones) though the second week I thought I was going to chew my hands off if I didn’t get some sugar!

On Wednesday I’ll be offered free biscuits etc when I’m on the train but I’m not going to indulge as much as I usually do. Certainly no crisps even though it delights me to ask for cheese and onion and watch all the noses turn up at the thought of the smell…

There it is. I’ve been busy by my standards and I’m not going to measure my busyness with anybody else’s because that’s a bit on the stupid side. I’m going to be happy with the fact that right now I’m not just managing, I’m coping and that’s a great feeling.

Planning, Photographs, Pokémon Go and a Pie

I have started putting the decisions I made into action and it feels quite good.

Today I sent the email that delivers my opinions on a report but also, just before I signed it, says I’m not going to be doing any community work any more. I’m going to attend community meetings (perhaps) but that’s me done and this time I mean it.

I’ve talked to a friend today and we’re planning some things that will help me cope with whatever it is that’s going on in my brain but allow me to do useful things as well as getting rest and reshaping my life.

Today I left Ogden at home and walked up and down a street taking photos from a recent graffiti festival. The impact of the festival on the local community is huge (think women as well as men peeing in the streets and more rubbish than a whole series of Big Brother) but the artwork left behind on walls and shutters is beautiful on the whole.

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As I walked I played Pokémon Go (judge me if you must but it’s bloody good fun and I was walking the whole time I did it so therefore exercise) and thought about how it was a long time since I’d done such a walk and that it’s easy to leave the good things behind if you blink too slowly.

I’m going to keep on working on accepting that I have to make changes in my life but that I can make the changes a positive thing. I’ll always be able to write and I will always be able to put that to use in one way or another even if it’s only writing a blog and divulging my insecurities and perceived weaknesses.

My voluntary job will continue and I’m in the driving seat as far as that goes so all is well and if not consistent then at least manageable.

Tonight I’ve felt like celebrating but since I don’t drink or smoke I had a pie. A carefully chosen pie though – not too high in saturated fat – and a very nice pie it was indeed.

Pies aren’t bad metaphors for life – it’s as wholesome as you make it, it can be indulgent and as long as it doesn’t damage you it’s bloody lovely.

Decisions, decisions, decisions

I’m not good at doing nothing. I have to be doing something and the art of doing nothing has become about mindfulness – I’ve been practising proper mindfulness for over 10 years not this concentrate on your breathing crap that people sell as mindfulness. Mindfulness isn’t doing nothing of course, you’re actually acutely aware of yourself (if you’re doing it properly) and not in a trance.

I don’t get bored and it’s so long since I was bored I can’t remember what it feels like. The decisions I’m facing are what I should stop doing and what I should be doing.

The community work has to go of course, some other fool can chase the non-existent glory but my voluntary work will stay since it’s simple to do though how it will continue is one of the things that has to be decided. Whatever is decided, those changes will take a few weeks to kick in.

How I run my home is going to have to be assessed. If the results of the CT scan are not too good then I’m going to have to consider, and seriously consider, help from an outside source. I don’t do having help and my independence is a very conveniently placed wall that all the idiots in the world can’t climb. It is my saviour and I refuse to be pushed into thinking that it’s a burden.

There will still be trips away and there’s no reason why they should stop. I travel in Britain on a disabled travel cards so I’m still going to be able to go in style with a massive discount. I will have to consider their length and frequency though, that’s massively important.

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I’m also going to have to think about food properly. I can’t go on with the chaos even though it’s incredibly difficult for me to not be chaotic and fractured when I’m in the kitchen on the days that I don’t cope.  I think it’s time to stop telling everybody I know about food and ask to see a dietician. I need to start being sensible.

It’s easy to sit and tell myself these things but they’re much harder to put into practice.The level of chaos in my head varies wildly from day to day or from morning to afternoon to evening so good intentions at breakfast can end up in despair and tears by bedtime.

I think I should start with making lists and if it’s as far as I get and no further then that has to be ok.