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.

The kitchen, stress, dog, stress, cats, stress

I think it’s fair to say that, reading from the title of this particular blog post, you can guess I’ve had a stressful day.

The old kitchen got stripped out this morning and it’s going to take about two weeks to become the new one. The council have a contractor to do them and each step has to be done in turn before the next team can come in and do their bit.

My kitchen was supposed to be ripped out yesterday but, as I was in London yesterday, they had to delay it a day. This meant that the plumber coming this morning to fit a temporary sink unit had to do it this afternoon.

Today has been very cold and so I couldn’t take Ogden out for the whole time that they were working (about 4 hours in total) so there’s been a lot of barking and whining and begging me to stop the noise.

The contractor claims that they can’t say when the team will be coming round only whether or not there will be some activity in the kitchen that day and where on the list I’ll be. They can’t give me a time because they don’t know how long previous jobs will take. They can’t tell me what time it won’t be before (that should be an easy one) so that I can go out and get some fresh air or some shopping so that when they do arrive I can concentrate on getting Ogden into a stress free atmosphere. Of course not because THAT WOULD BE HELPFUL.

They’re gone until Monday and then it’s asbestos day which means we really are better off out of the flat so I’m hoping it’s not going to rain.

On Tuesday Ogden is having his toe amputated so you can guarantee that is the one day that they will not work on the kitchen. He’s going to be away from home until mid-afternoon so there’d be no barking or stress or me getting the headache from hell so Sod’s Law it will be.

I was beginning to doubt the wisdom of me being away immediately prior to the work on the kitchen starting but I’m glad I did because when Ogden is barking and there’s a racket going on in the kitchen I can be sat, in my mind at least, beside a roaring fire in a pub in Chislehurst.

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.

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.

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.

Today is gratitude day…

Yesterday was the final day of three days of mania. It was extreme irritability day (I was very annoyed with myself even) and it was breaking point day. If I were ever to commit suicide – and I sincerely hope that I never will – it would be on the final day of a manic episode. I want to tape my mouth up, rip my brain and self harm big time.

I contained myself as much as I could and I blogged about it. I think it’s important to  share the manic experience because so few people experience it for themselves but I also think that if I put the experience down on “paper” then I am, in a way, freeing myself from it. I truly believe that staying silent enslaves me.

Most people were wonderful. My family and friends were there with kind words and unspoken support and I felt protected by them. Other people weren’t so nice and one in particular wrote off my feelings of frustration at somebody refusing help and rebutting my offer of help at me being mentally ill. This, at its best, is discrimination but when it comes from someone who claims to have personal experience of mental illness it is damaging and disgustingly spiteful.

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Today was different – the quick chat in the pet shop, bumping into a neighbour in the street and laughing together, the packet of Revels that was cheaper than I thought, the easy talking with the checkout operator as I packed my shopping and the longer talk with another neighbour out in the churchyard that serves as a park which is right on my doorstep.

He and his wife have a rescue dog who is the sweetest if oddest looking dog I’ve seen. He recognises me and runs towards me with that smile that dogs have and today I got the supreme compliment from him – helicopter tail! Dogs don’t do helicopter tail unless they love you immensely.

As I talked to his owner I was really counting my blessings out loud and inside I was tearful as I did it. Counting your blessings in your head doesn’t work unless you say them out loud to somebody else or write them down and it’s always good to remind myself of my privileged life.

  • I have the time and space to be ill – sounds bizarre but I can take time to manage bipolar disorder even if I can’t cope with it;
  • I have lots of animals and there is always at least one that’s awake and ready to be cuddled;
  • I live on my own so if I can’t face the washing up or doing the laundry then I don’t have to;
  • I can nap in the afternoon in a haze of Valium if I need to;
  • I can catch up on television programmes or watch a movie without consulting anybody else;
  • I can eat when I want and what I want (and  yes those are cornettos you can see in my freezer);
  • I can live the life I need to live and not the one that other people think I should.

Tomorrow will be the day I feel as though I’ve lost people and that I’m emotionally detached from them but I’m expecting that and I know it will pass. I may chatter a lot on social media or I may sit quietly at home and read but I will do what is best for me and that’s good enough.

On being unbelievably ratty…

I’ve been really high manic again for three days and it’s wearing me out.

I’ve baked bread and scones, I’ve done laundry, I’ve hoovered every day (unheard of) and walked for miles and it’s all taking it’s toll.

When I have a long cycle through a very high mania I tend to have a build up over a couple of days until it all explodes into an unbelievably ratty mood. I am not pleasant to have around at these times.

I knew the mania was building up at the weekend because I started shifting furniture about and had a total disregard for what I was doing to my body. I’m not 27 anymore no matter how many times I claim to be and I’m always covered in bruises or clutching my back or both. By the end of Saturday I’d dismantled a chair (with the help of a hungover neighbour) and filled three bin bags of stuff that I’d been meaning to get rid of for ages. I couldn’t sleep on Saturday night because my mind was racing.

On Sunday there was more of the same only in the baking department and with laundry. I couldn’t seem to stop doing either and both at the same time which was far too much even for a mega manic me. By this time my words were becoming muddled and I was not making any sense. It’s one thing to talk a million miles an hour but when those words come out in a jumble because your brain works faster than your mouth it’s a pain in the arse.

Yesterday was a day of everything that needed to be done (including a walk with my dog, baking a batch of bread, hoovering, bath and hair wash) before Ogden got picked up at 11.00 for his afternoon with the pet sitter. At this point I should have taken a couple of Valium and slept the afternoon away but I’m manic so I don’t listen to common sense.

I went into town and found that the exhibition I was planning to see was £5 to get in and I refuse to spend money to go into museums or places of worship. I then decided that instead I would walk over to the cathedral to take a few photos and have a sandwich in the coffee shop except that it was a graduation day so there was nobody allowed in except over-excited students and their over-dressed parents.

By then I was getting a bit short in temper.

I picked Ogden up and on the way home a man bent down and almost kicked my dog in the face. I swore not quite under my breath and told him off. This man then justified his behaviour of not taking care about what was going on around him because his child was the most important thing not just in his world but everybody else’s too and basically my dog was way down the list of consideration. Of course I let rip.

When I let rip I am accused of being rude, bitter, over the top or all those and some more. I’m actually not being rude intentionally but I am inadequately expressing an irritation that boils over into anger that, because I’m manic, I have difficulty in controlling it. Yes, sometimes it does come across as pure rudeness but other times it very definitely comes across as big anger. I am harmless though and I’d never get physically violent.

I am not bitter – that’s an emotion or mood or whatever you want to call it projected upon me. The unfortunate recipient thinks,”If that was me then it would because I was bitter.” One woman told me God loved me and that she’d pray for me after almost knocking me down as she drove across a pavement to park on it. Bitter – no, rude – yes.

Yes it is over the top because mania is about being over the top. Mania isn’t about being sedate and controlled, it isn’t about being moderate and dignified and it certainly isn’t about being restrained.

So today I’m feeling sorry for the bloke that I verbally lashed out at but still angry at him for almost hurting my dog then  dismissing him as though he didn’t count and I’m sat here wishing I could live in a wood with my animals for company and just never talk to anybody ever again except my family and my closest friends. In the meantime I’m keeping the list of people I need to speak to very short and counting to a million whenever somebody has the misfortune to irritate me…

Shredding, shredding, shredding

As you may guess by the title of this post I’ve been shredding a lot lately and doing even more decluttering around home than I thought was possible. I’m not the kind of person that holds on to possessions but they can always be just a little more organised.

I used to live in chaos because I never used to know where to start to stop the chaos. If something is so hugely overwhelming that you have no idea what to do it consumes you almost entirely but start somewhere you must.

I actually began some years ago by listening to a good friend who holds Lasting Power of Attorney (LPA) for me and is also a financial adviser. He took a good look at my income and my outgoings and showed me where I could be saving money and, more importantly, how to save for a rainy day. I now have my rainy day money and I manage my financial affairs, for the most part at least, quite well.

Once I stopped worrying about money I could concentrate on other things and the flat became tidier (though it will always be tatty) and I am able to feel more in control. These past few days have been about shredding old paper work that was from my last job and now that it’s gone all the file boxes can be used for storing my things. It’s lovely to see them all stacked up neatly and almost everything has a place and is in it.

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I’ve gotten rid of a chair that was beginning to really bug me this week and have been able to move my tallboy (more of a medium boy actually) into my store room and get my dining table out again so I have more space and I like the look of it. This is an incentive to keep the level of domestic chaos down considerably.

I’m getting a new kitchen installed – hopefully before the end of the year – and I can buy more cupboard space than they are obliged to give me so I’m already planning that in my head.

All this will give me the time and (literally) the space to manage my health and I’ll be able to do it at my pace without the nagging of the things that need to be done dancing around in my head. Now all I have to do is work out a way to get the laundry pile down to a manageable level. Anybody got a box of matches they don’t want?

Old friends, yellowing photos and a sense of recklessness

I’ve been looking at some old photos recently as I’ve been doing some big time changes around the flat in anticipation of having a new kitchen done sometime this year. I can’t part with printed photos because if having a photo taken steals a part of your soul then surely if you destroy a photo you’re destroying a part of your soul when you get rid of the evidence of a memory?

I’ve put some of them on social media – quite a lot of them actually and people have reacted to them and around them and it’s a lot of fun. Those reactions have had an effect on me and caused me to glance back at my life.

I can’t say I’ve lived a life when I haven’t said, “What if…” but nor will I ever say that I’ve lived a life beset by regrets and wishes to bring back lost time.

When it comes to love I often think of a certain monk and what would have happened if we’d actually voiced our feelings and done something with them instead of going into a kind of mourning. I often wonder how he is and what he did with his life and I always hope he’s happy doing whatever it is he’s doing.

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I wonder what would have happened if Dave and I had moved to London as I had wanted instead of Bristol which is what he wanted. Yes, I know it would have just become another city over time but a city with endless photographic opportunities for me.

What if I’d went to university or never got married or walked right instead of left down any street on any particular day?

I’ve always lived my life pretty much the way I wanted to. It takes recklessness, selfishness and a kind of single mindedness to do it and, despite what people think, a willingness to accept the responsibility for the chaos and catastrophes that that way of life can cause.

It is, however, the reason that I’ve appeared on television and radio more times than I can count, it’s been the reason behind several newspaper articles about me and a few I’ve written myself. It took me to the Frontline Club to make a video (amazing place!) and I’ve enjoyed all those brushes with minor fame because I got to speak about mental health and inequality to a very public audience.

The biggest of all the “what ifs” is about the bipolar disorder but even though it impacts on my life with greater severity as the years go by and I find myself unable to cope quite a lot of the time I manage it reasonably.

So no real regrets and I’m always up for another load of recklessness if it comes my way.

Stop the world, I want to get off

I’m waiting to see a psychiatrist again. My GP requested a referral and we’re both hoping I’ll get to see my last consultant mainly because he’s amazing at his job but also because I saw him for about 10 years and we developed a mutual language so it would be easy to talk to him. I can go in and tell him I feel well fucked up and he’ll know what I mean. Priceless.

I’m ultradian cycling (though at this point it’s only one change every 12 hours or so) and this started on Thursday. It was odds on it was going to start – EU Referendum, opportunity to write about it for a website and staying up all night to listen to the results – it was never going to end well. Politics leave a lot of people cold but I love it. I’m not eloquent about the subject but I know what I believe in and that passion, like all the others that inflame me, burn me out with mania and turn me into ashes with depression.

I’m fed up with the in-house mud slinging of those within the Labour Party re Jeremy Corbyn. He was voted leader by people who know that, despite the leadership and Tory Lites of recent years, the Party was born in red brick houses and not red brick universities. If he is deposed then the Labour Party membership will drop overnight.

I’m not at all surprised at the antics of the Conservative Party (has anybody found George Osbourne in their shed yet?) and the desperate please of the Liberal Democrats is rather sad but have any of the shit stirrers thought about what this is doing to me and all the other vulnerable people who have elected them, voted in the referendum and left feeling scared at the uncertain future that has been created?

I’m in that tiny section of people who are considered so ill I was put in the support section of ESA for life (without a face to face assessment) because the risk of me committing suicide if I was forced back to work is too high for them to take the chance. This means that my income is guaranteed but I am not invulnerable to rising prices, higher utility bills and I cannot tell myself to worry about life in the UK because it is something to worry about.

Anyway I’ve been so manic that I can’t get the words in my sentences in the right order and today I’ve dipped into depression and couldn’t care less if my words are in the right order or not. I’ve decided to focus instead on a day out in London I’m having on Thursday and if I burn out then so be it.

Meanwhile the country is being fucked roughly by the people we have trusted it to. Bastards.