Privacy and the peeled baby

Today I feel exhausted and the pain I felt from writing my most recent blog has left me feeling soulless. I rarely expose so much of myself when I write. People often think that they know me through my writing but that’s not true – they learn of my experiences but me, my inside self, is left inside of me.

There are two reasons for this and they are that I’m an very private person and that I’m a peeled baby.

So what is a private person doing writing a blog and what the hell is a peeled baby?

I write to let people know the reality of living with mental illness and I am mentally ill. In 45 years I have experienced little respite – the longest period lasted eight weeks. I do not write to raise awareness. Raising awareness is an empty phrase because you are aware of mental health problems or you are not and it is far better to educate people in a meaningful way rather than shouting very loudly, “Hey, do you know that there’s something called Mental Illness? No? About your business then.”

I tell you of the devastation of it causes in my life, I tell you of my reality. What you don’t know is the colour of my eyes, what my favourite fruit is,  what this wonderful bed I talk of is like, why I prefer yellow roses over all others and the biggest (and toughest to cope with) phobia that I have.

You don’t know me, you know of my illness.

So what is the peeled baby thing? My GP once called me this and it’s a phrase he only uses when he refers to me. Simply he sees me wearing a suit of armour so tough and sturdy that nobody can penetrate it – life slings stones, boulders and unexpectedly attacks me and, to all intents and purposes, all these things bounce off me. Then I go home.

When I am in my safe place the armour comes off and there is a peeled baby inside of it; small, vulnerable and she has no way of coping with the world. She sits bleeding and unable to cope with the the things that other people call normal. She weeps sometimes and other times she is filled with an energy that is frantic and then she sits down again and is that peeled baby once more.

That is the harsh reality of my life. What you see is not what you get and I think I’m tired of hiding behind the armour. I’m too tired to pretend I’m coping. I’m tired of living the way I do. I’m tired of everything.

The only thing that’s keeping me going today is the love of my family, my close friends and my cats and dog. I am going through the motions because of the love and because the animals need me.

I am not suicidal, I am a peeled baby and a bloody exhausted one at that.

I’m going to talk, are you listening?

A few weeks ago I got a letter through the door telling me I was due for an ESA reassessment. Part of me dreaded looking at the form and so I didn’t for a few days and allowed myself to feel panicked and because I allowed that feeling it passed. When I looked at it I was reminded that it was actually far simpler form than I remembered it to be. Don’t get me wrong, it’s a difficult form to fill in because you have to spill your guts out on to the pages but the form, to me at least, is simple. Or maybe that’s because way back in the day when I worked for DHSS you needed a degree just to open the envelope let alone fill it in.

I talked to my doctor about the supporting letter that I’d need and gave him photocopies of the pages of the form that I’d filled in. (I’ve now posted it and as I write this I’m panicking in case I’ve missed something important out – like my name and address and yes, I have just checked my copy to make sure that I have put it on there.) I digress.

I read the supporting letter that my GP wrote for me this morning before I had it copied and it had me in tears from the the first few lines. I choose the words I used to describe the effects that bipolar disorder has upon me and my life but I cannot choose the words that my GP chooses and it’s those that bring the stark reality of my illness and life into far too a sharp focus.

“She is significantly disabled by her condition.”

“When I first knew her she was particularly unstable, and I had real worries that she would commit suicide…with extremely vivid suicidal fantasies and a degree of derealisation and impulsivity.”

“She experiences very marked irritability that she manages by avoiding interaction with others unless it is very carefully planned and time limited.”

“She is certainly very intelligent, resourceful and insightful however, she copes only by carefully controlling the scope of her life and by reducing as far as she can activities that could result in loss of choice or control.”

“I continue to see her once or twice a month as she always teeters on the edge of instability. Her regular contact with the surgery has been helpful but it does also demonstrate how fragile she is.”

“She only just manages to cope with the necessary activities of daily living.”

“I would strongly recommend that she is not pushed in the direction of work, and that she is allowed to maintain the freedom necessary to make the hour by hour choices that enable her to cope with what is a very unpredictable and exhausting illness.”

Forms are simple, letters are easy to write but coping with the way it spells out your painful life letter isn’t.

So let’s stop with the Time to Change, Time to Talk, Heads Together fuckwitted mentality and really learn what life is really like for those who cope with the kind of shit that I live with every single bloody day.  Instead of harping on about how you’d like to help ask somebody to show you what they have put on the form to prove that they’re in the grip of a mental illness that they can’t escape from. Perhaps then things may change, people may really talk and, miracle of miracles, they may even begin to listen.

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.

How to pronounce ciabatta, a rant & phoning the BBC while asleep

I’ve got listings on a website to update but I won’t be able to settle down and do them until I’ve written. I have little idea of what I need to say beyond the opening paragraph but I know I have something to say – whether it’s meaningful or not is unimportant.

I’m wondering if I’m setting off on a manic cycle again and I think I may well be is my ex’s pronunciation of “ciabatta”. I used to tell him that see-a-batta was incorrect and that the “I” made the “c” soft therefore the pronunciation was “cha-bat-ta” but he’d have none of it. His response to my correction was the same every single time – he’d had a couple of terms in a private school so that made him more knowledgeable than me (untrue) even though I took Italian lessons in my 20s.

Not an ugly duckling website

Anyway, now that’s out of the way I shall tell you about the letter I got from the mental health trust telling me about the appointment I’ve got with them next week.

I was a bit shocked when I read it because even though the trust purports to provide mental health care the way the letter is written is distinctly uncaring.

It didn’t name the person I was going to see even though a telephone conversation recently and a referral from my GP made it clear that I have far too a complicated “picture” to be seen by a junior doctor. It didn’t even say that I was going to see a doctor just a “mental health practitioner”. What kind of practitioner? Consultant? Junior psychiatrist? Nurse? Occupational health? Student?

I rang and asked who I was going to see and they refused to tell me on the grounds that it may change at the last minute. I reminded them that I had to take two buses to the location which was potentially three hours travelling (for an appointment within a reasonably small city!) and I had a right to know who I was going to see. I eventually got it out of her and I was happy with the person who she said it was and if it changes at the last minute then I’ll have to deal with that if it happens. I won’t cope very well with it but if I want a medication review then I have to do.

I suggested that the letter should name a person with a rider that says it could change at the last minute to be asked, “Who would that benefit?” I gave her the tired spiel about anxiety and enabling people mental health problems to feel empowered and valued but apparently the staff are too busy for all that. Or at least the clerical staff are anyway.

The bloke I’m seeing (fingers crossed) is a great person and I will raise it with him when I’ve finished bending his ear and asking for more drugs and he will listen to me. Why am I so sure he’ll listen to me? He will because I told him of how I’d made a phone call in my sleep and had no memory of it when my call was returned and he told me that when he was a student he’d rang the BBC in his sleep (his brother witnessed it) and asked to speak to his mother who didn’t work for the BBC…

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…

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.

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.

An endless springtime

There is a theory, to which I subscribe, that manic depression is a hibernation cycle that has gone badly wrong.

In the lows, the depths of mood where it is impossible to feel even in despair, we are hiding in caves not of our choosing waiting for spring to creep in and enlighten our lives.

In the highs, the manic fevers where it is impossible to get true rest or think very clearly, we are outside tilling our fields like there is no tomorrow and shooting everything in sight to prepare for the long winter that will surely come.

I have spent far too much time in the hibernation stage and, until recently, I have never experienced a period of chronic mania. I can cope with depression after a bizarre fashion as days pass by, albeit at a ridiculously slow pace, and they are all the same. If I can get out of bed I do and if I can’t I don’t. I carry a cushion around inside my head that acts as a buffer against the world but it also over protects, it shields me from myself. But it is comforting and it is only once I improve and gain energy do I pass through the dangerous zone when I become suicidal then move on to self harm and, finally, back to the instability that is considered stable.

I have spent little time with prolonged mania and have had to accept that my period of acute mania has now become a period of chronic mania and I hate it. I no longer have mood swings and what would have been periods of depression are now bouts of exhaustion. I collapse into bed at least once a week to sleep for 12 hours and I rarely sleep less than nine hours. It is driving me crazy.

I can’t stand the relentless feeling of being upbeat, of seeing only the positive, of being hugely irritated by people who I think are too stupid to understand what they should, of having people not follow the lines of thought that leap magically across huge gaps so that the first few words in a sentence bear no relation to the last few words and most of all I am tired of my mind going so fast it can’t lay down memories.

We all go through the going into a room and forgetting why we went in there moments but with the memory problems that have come about because of bipolar disorder I often have no idea why I’ve stood up or how to finish a sentence I’ve started or started to put on shoes and socks to find I’ve only managed to do one. It’s a relentless struggle and it is madness.

I have to accept that this isn’t going to go away quickly and that even a period of recovery will take time. There will be no waking up one morning to find myself back in my own instability and I have to stop kidding myself that I’m within my own instability when clearly I’m not.

What worries me is that I find it hard to accept my limitations at the best of times and in these not quite the very worst of times I could make things a whole lot worse. I never thought I’d say this but, I miss being depressed.

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.