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…