The wind, time immemorial & the inner explosion

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

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

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

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

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

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

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

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

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

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

Well hello depression

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

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

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

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

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

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

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

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

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

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.

Help and the lack of it

When people talk about people with “mental health issues” slipping through the net it’s usually because a person with a mental health diagnosis has killed somebody or they’ve committed suicide after they’ve been in the system and discharged or thought not to be a risk but there is another side to it.

I’ve been in the system three or four times but I’ve never been hospitalised or sectioned because I’m outwardly competent if inside a wreck and because I manage my illness well even though I cope with it badly.

I need help but I fall out of the remit of all the services available. I’m not in a crisis that’s severe enough (I am not in danger of taking my own life but I am close to self harm) so I can’t be referred to a psychiatrist. If I become suicidal or in real danger of self harming badly then I can get in touch with a Crisis Team who, on one occasion, told me if I could verbalise the way I felt then I wasn’t truly suicidal (bastards).

I’d like help in my home but I fall out of the way that Social Services help even if they accepted my referral and I know they wouldn’t.

A group on Twitter in the town where I live want to do “good things”. I need my living room redecorating & I’d like laminate flooring laid. I’ve money to pay for the paint etc. but I need to get estimates and estimates come at around £80 a pop and I can’t afford to spend that to get ripped off. I volunteered myself to this group and was turned down as not being a “real cause”. By that they meant they want photos in the paper of a frail old lady being overwhelmed with gratitude or a “plucky” child in a hospital bed and an article lauding the group. If you want that then you’re not into doing good things, you’re into be praised for them. It’s a barely disguised form of discrimination.

Yesterday a neighbour stopped me in the street to fish for gossip and I let her fish. She asked me outright if I’d been “cured” (I’m not a side of bacon) because I seemed so cheerful. I was manic and tried to explain to her it was a high mood and that I wasn’t cheerful, I was out of control. She looked away from me and muttered words to the effect that I looked all right to her.

And that’s the rub. I spend my life looking okay on the outside and on the inside I’m a peeled baby inside a suit of armour. My greatest fault is being able to mask my illness too well and because people with mental health problems aren’t considered to be in physical need then through those gigantic holes in the net I fall again. And again and again and again.

 

Changes, changes, changes

After around 8 – 10 months of what has become chronic mania I am finally depressed for more than 24 hours. It feels awful but it also feels good in a bizarre way. I’m not in a high grade depression, it’s relatively low grade, and so liveable with.

Strange though it may seem to some people, it actually makes me feel kind of optimistic because after a relentless period of mania I’m feeling something that’s not incredibly out of touch with reality. It’s a form of insanity and I’m glad of the relief that comes with it ending at least temporarily.

How long this will last I don’t know. I am sincerely hoping that it lasts for at least three or four days. I want to be depressed so that I can feel something. I want to cry at the begging adverts on television asking for money for starving donkeys instead of being irritated about them. I want my empathy back for more than 24 hours.

I cried yesterday as my mood plummeted and I’d like to cry some more. It may seem strange to here but I’m actually enjoying this depression because it’s a wonderful change from the relentless fucking optimism that has been haunting me for far too long.

I feel outside of the world and I feel detached from reality but I feel something and I’m grateful for that.

 

The deterioration of self…

I feel as though I’m disappearing quickly and all that is left to see and feel is mania (though one day I’m sure that mania will be replaced by depression). It’s quite a dramatic thing to think and say but it is by no means the statement of a drama queen.

Last week I went away off to London/Kent for a few days with my wonderful dog who came to live with me as a rescue last year. About 6 weeks after he arrived I made a similar journey with him and he coped admirably but last week was totally different. His first visit was made whilst he was still timid and not sure of who I was or that this was his new life and last week he was brimming with confidence, playfulness and a need to demonstrate that I was his mum. It was exhausting.

On the way back home we got to Paddington station early so he could calm down and sit in the waiting room peacefully instead of the hour in Hyde Park that I’d planned. It would have been fun but he’d have been so hyped up it would have been nearly impossible for him to sit still on the train. While we were waiting for our train the sad news filtered through that there had been a death on the tracks just outside of Reading and that meant changes to the journey. We got on an earlier train and that meant a 40 minute journey at the other end by bus before a 20 minute walk home – small changes compared to somebody losing their life but the impact on me was bigger than I expected.

I found myself sat on the train crying which, being in a chronic period of mania, is unheard of these days. I felt confused and unable to cope with getting off the train, walking 100 yards and getting on the rail replacement bus. It felt as though I was facing an arduous journey. Luckily I was able to talk to the train manager and show him my railcard that states I’m disabled and he made sure I got to my bus safely.

Almost a week later I’m still exhausted. After talking to my GP this morning it’s obvious that my ability to cope with small changes has disappeared; I can no longer cope with small changes in my routine. Five years ago I’d wake up really early and go off out for day to who knows where and not think about the impact on myself – I could cope with change. Even without a dog in tow I couldn’t do that now.

I had forgotten that I had an appointment with my doctor today until I got a text reminding me. It has thrown out my plans for the day because it was a small change. It has shifted my day by about 45 minutes but my brain tells me that I can’t have the day I’d planned because the timing has changed. I get a physical feeling on one side of my head as I try to reason with myself that I can still do the things that I’d planned but it doesn’t work.

It’s acknowledged that this isn’t me, this is bipolar disorder – I want to do the things that the illness is telling me that I can’t. A friend reminded me this morning that we all have limitations and that we can’t always do the things we want or need to because we can’t get our head round them and that’s true, I’m not special or unique in that way. I struggle a little more perhaps because the illness gets in the way. It’s hard going from being a spontaneous and chaotic person to somebody who is no less chaotic but is less able to embrace it.

People often say that it’s the little things that count and in my case it’s the little things that count against me.

Not coping, managing

I have a difficult illness and, as my former consultant psychiatrist often said, I present an unusual “picture”. He has never seen anybody quite like me and I have never met anybody with bipolar disorder with whom I could identify. I often think, as people talk and relate their symptoms, that if I had their version of bipolarity then I would be living a much different life.

I have been taught by the aforementioned psychiatrist (and many other people) over the years how to manage my bipolarity and to really find out where it and I divide; where I stop and it begins.

I have been taught not to assume that the way I feel when I wake up is anything other than feeling the way other people feel when they wake up. I have been taught that a day that starts badly can finish well and a day that starts well can finish badly but both can be counted as successes.

I have days where the highs and lows change so often that I want and need to rip my brain out but all I can do is take sedatives and wait to be sedated. There are days when I can’t keep awake (no drugs to help with that) and nights when I can’t sleep (no drugs can help with that) and the middle of the road days where medication helps and nights where I succumb to the effects of sleeping pills. There are also days when I touch on normal and sleep comes easily – apart from the ever present fear that I’ll die as soon as I close my eyes.

For the past year or so it’s obvious that my unusual picture has become more unusual and there’s nothing I can do but sit back and wait and see how it pans out. I’m a few months short of a year of much mania and ultradian cycling but I’m sleeping and I am getting a lot of bread baked. I’m not getting much housework done, my personal hygiene takes a knocking at times (I could well be that woman who smells of pee on the bus at times) and my chaotic eating habits are uncontrollable.

Having said all this I manage the illness. I take the medication, I practise mindfulness, I live to spite it not in spite of it, I try to look after myself and I recognise that there are days when I blame the illness for things because I refuse to own up to them.

This is not coping with an illness this is management of an illness.

I don’t cope because, try as I might, I don’t get enough baths in a week, my hair often smells like I have a sheep living on my head, I buy food and then don’t eat it, I get the vacuum cleaner out and it stays out and unused for weeks at a time. Some days I sit and wish I could cry just so I could feel something other than the borderline hysteria that I’ve felt for the past year. I cannot control the irritation that I feel (I don’t suffer fools gladly at the best of times but when I’m manic I want to kill) and it boils over into an anger that isn’t always, if ever, reasonable.

I don’t cope because I have to be alone because I like being alone but I have to go out and be with people I don’t want to see. I want to be with the people I am emotionally close to but I keep them at a physical distance because it’s kinder on them.

I don’t cope with the effects of my illness I manage the symptoms. Big difference.

A head full of shit

I feel a bit strange and have done for a few weeks now. As I return back to my version of stability, which is really a level of instability that I can live with, I’ve become aware of, and am coming to terms with, certain things.

The first, and arguably most important, is that I’ve gone from being a predominately depressed person with manic depression to someone who has become predominately manic. Mania is supposed to lessen as you get older but I’ve never been one to follow all the rules.

Having spent quite a long time unstable last year which resulted from an attempt to stop taking medication (supervised not whim) I was acutely ill and on the point of it becoming chronic. Even when back on the full dose of my usual medication I realised that I wasn’t going to get stable without extra pills and that was, potentially, a problem. My GP needed input from a psychiatrist and I no longer see a psychiatrist so it looked like a referral back into the system was going to happen. This would have been a bit hit and miss depending on how urgent it was deemed so my GP rang the consultant that I’d seen for a decade and he agreed to do recommendations over the phone. This flexibility and bucking of the rules is what makes the NHS great. In a fee paying medical world the man would have had to forgo a fee,

I had noticed that I was feeling a greater lack of emotion that usual. This is not unusual with depression but not so with mania. It made me consider what was going on and, looking back, I have to accept that I can be cold and ruthless when it comes to people. I put it down to being an Alpha person and therefore I have a touch of the psychopath about me (25 on the Hare scale so a big touch) and that it’s something I try to rein in. On the odd occasion when I feel backed up against the wall and the person refuses to read signals that I’m not necessarily giving out I lash out big time.

I hadn’t cried for a long time and have since cried a little but, in a way, I want to wail in that almost animal way that hurts like a painful death but leaves me feeling empty and ready to move on. I also haven’t laughed a lot except with close friends and family. Sometimes the laugh is on my face and in my eyes but inside my head there is nothing. I rarely laugh at comedies or comedians and this puzzles me. Is it linked to manic depression or is it part of the suspected psychopathy?

There’s love too. I love people but it has never been an all consuming thing for me. I don’t love easily or readily so when I do it’s something that scares me. I get confused about what other people think about what happens when you love someone. I like my friends at a physical distance so that I can cope with emotional closeness. My last big relationship was with a man who lived 3.5 hours travelling time away and sometimes it felt far too close.

I’m rambling more than a little and whilst it makes some sort of sense to me I have the feeling people won’t get what I mean even though some people will say they do. This is my head and it’s not possible for anybody to get inside it and, even if they could, it’s not the kind of place you’d want to stay for very long.

Being overwhelmed, Twitter bullies and the death of a superstar

I get overwhelmed by huge amounts of information and it really hurts my head. My last consultant said he thought it was because I had become a person with bipolar disorder who was more manic than depressed when for years it had been the other way around.

I began taking photos after my dad died and there was money from the sale of our childhood home and the aforementioned consultant and I both agreed that it was a wonderful way to block out the information that constantly threatened to overwhelm me and it gave me a focus that I hadn’t had before.

I still get overwhelmed by things outside my head. Noise on television or sounds that seep in through the windows. The chorus of non-stop chatter on the street that I can’t block out with a bubble made with my mind. My dog barking, my cats purring and even my rats shifting things about in my cage all overwhelm me.

At time I go into periods of dissociation during which I don’t recognise my surroundings and I get lost even though I’m possibly close to home. Sometimes I can find my way back home because I know where it is even though I don’t feel it’s there. It’s an incredibly frightening experience.

One of the ways I try to minimise being overwhelmed is by following small amounts of people on Twitter and have less than 60 friends on Facebook. I can cope with that amount and it means that it’s a good way of getting to reality on the days that reality avoids me.

Recently David Bowie died and I was one of the first people in my timeline to tweet the breaking news report. I didn’t add a comment or say how much I would miss him because I won’t. I wasn’t a fan of his music, I knew (and still know) little about him.

Very quickly my timeline was full of tweets about David Bowie, how wonderful he was, how people were shocked, how they were in tears and how devastated they were. I’m sure that some of these people were sincere and I’m quite sure that a lot of the retweets I was seeing was about jumping on a bandwagon and not sincerity.

I tweeted that it all felt like overkill and ended the tweet with a set of abbreviations that indicated I was swearing. I did that because in a matter of minutes I was totally overwhelmed by it all. Twitter had gone from being a link to reality to a place of the kind I used it to get away from.

Immediately I was unfollowed by some people, soft blocked and blocked by others and berated for not allowing people to grieve; the word “belittling” was used. It was clear that whilst people could shout with grief I wasn’t allowed to be overwhelmed or speak of it and it felt that my words were deliberately misinterpreted. I felt bullied and by people who had always spoken of equality and how important it was. I’m quite sure that more people will unfollow me when they read this but that’s there choice and I won’t argue with them about it.

Later in the day I deleted that tweet and published a series of tweets that explained how and why I felt. I was rounded upon and told I was rude and vicious by people who admitted that they hadn’t read the tweets but they thought their actions were justified because I wasn’t grieving over David Bowie.

The times the crowd rounds on you so viciously is far more often than it should be. It’s a form of mob rule. I have had messages in the past from people who have said that the bullying of me that they witnessed was horrible but they felt that they couldn’t intervene because they were afraid that they would be bullied too.

This shouldn’t happen. If free speech is fine for one person then it’s fine for all people. I shouldn’t have been verbally abused for being different and not being able to cope even if I was in a minority. If social media is my lifeline then I have a right to use it in the way that works best for me. I bite my tongue several times a day when I disagree with somebody I’ve grown to care for (both on and off line) though sometimes I do let people know what I feel.

So, I’m overwhelmed, feeling bullied and still not grieving for David Bowie but I’m okay and when I return to Twitter in a few days I’ll still be me. A slightly more apprehensive me but still me.

Why reporting disability hate crime doesn’t pay

I recently reported an incident of hate crime to the police. It was committed against me by someone who had been doing the same sort of thing over the years. Last year the local police, the housing officer and myself decided that I should report it through official channels so it could lay on file as an historical act and contribute to evidence when it happened again. I knew it would happen again, he’s not the kind of person to let go.

I made a statement and was told that the man in question would be interviewed under caution and it was intimated that it would be soon. Two weeks later I still hadn’t heard from the officer who was dealing with the case or even what his or her name was so I rang and asked for a phone call. I didn’t get a phone call.

Yesterday I rang and asked what was going on. The officer had picked up my message and ignored it. The woman at the control centre sighed throughout our conversation and she obviously thought it was unreasonable to expect a phone call in the evening – perhaps she thought people with mental health problems were incapable of answering the phone after a certain time of day. I asked to speak to the officer’s supervising officer. Unsurprisingly he was unavailable so I decided to raise a formal complaint and was told that I would receive a call from an Inspector within 48 hours. I still did not know if the officer who was dealing with the case was male or female and I’m not entirely sure if I was even told their name.

This phone call took 44 minutes including 36 minutes on hold. The Inspector rang me within half an hour because I was raising a complaint. A police officer has not been in touch with me over a crime that was committed three weeks ago but an Inspector can respond to criticism within an hour. Strange that.

The Inspector was offensive. He did not identify himself by either name or rank and had obviously barely scanned my statement as he asked me if there was CCTV on a street the incident didn’t happen on. On being questioned about whether or not Disability Hate Crime was considered to be a priority his answer indicated that it was, but only in theory and implied that mental health wasn’t considered a priority.

He went on to tell me that, even though he hasn’t a mental health problem and has not experienced disability hate crime (or any kind of hate crime) he understood my feelings on the subject perfectly. I challenged this statement by saying that unless he had been in the position I was in and had experienced the feelings then he couldn’t possibly understand how I felt. He claims seeing victims of hate crime gives him this understanding but fails to understand that he is seeing the impact of hate crime not experiencing it himself. He told me we’d have to agree to disagree which is a barely polite way of saying that he didn’t agree with my opinion and thought it without value.

Eventually he told me that the officer concerned should have rang me and done the interview with the man who abused me within days but they didn’t. Some officers are on top of things and others aren’t. Some will let victims know what is going on but others don’t. He thinks this is an adequate explanation and blames the way that the police work. Individual officers, it seems, have no responsibility for their work or the damage (and it has damaged me considerably) not doing it properly causes.

I wonder if he would use these same excuses and terms if I’d been a rape victim or was a member of the family of a murder victim. I think not.

I am going to make a formal complaint via the local PCC when I am a little more able. I’m enduring a crisis with my health that is taking months to get on top of and this series of incidents has made it worse. I could try going via another agency but accessibility is an issue. Accessibility to agencies that can help is not about wheelchairs or hearing loops or leaflets in a multitude of languages for people with mental health problems. Accessibility for me means being able to make a phone call and not stand or sit in a stressful environment for a long time just to see if I’m eligible for an appointment and then if I am I need to be able to speak with confidence to the person who is listening and that they will understand what I’m trying to say.

The Citizens Advice Bureau here fails on all these counts. My last experience with them was so stressful it contributed to my big breakdown which heralded the end of my working life and, as it was about debts and having an income statement to give to the people I owed money to, it was devastating that they missed off one essential outgoing and, for some bizarre reason, had all my bills & correspondence relating to my debts sent to their office. They did this during phone calls where I had given them permission to speak on my behalf and as these phone calls were made in a room away from me I had no input into them. They did not forward the mail on and I only discovered what had happened when the electricity rang me and asked why I hadn’t responded to a letter.

The local branch of Mind in this city have told me in the bluntest possible way that they don’t help people. What they are there to do is a mystery.

Have no doubt about it – these big charities work to a plan that doesn’t always include what is best for their clients. They seem to exist to fulfil their needs and not ours.

I am, in effect, stuck in a cycle of abuse that is being dealt to me by the very people who are supposed to help and can’t get help from outside agencies because, even though they mean well, they are inadequate.

I feel a failure as a person. I’m tough but I’m not unbreakable and currently I am broken. I didn’t become me with bells on as I envisaged when I was 14 years old instead I have become me with a bell, ringing it in advance to warn people that somebody with a severe mental health problem is approaching. That bell has been thrust upon me by authorities, bureaucrats and medics regardless of whether I want it or not. What they should be doing is ringing a full peal to celebrate the person that I am, not tolling a bell of doom warning people of the fears they think I embody.