RIP Amy Buel, thanks for all the hope

I read about Project Semicolon a year or two ago and the purpose of it really struck a chord with me.

It was inspired, if that’s the right word, by the death of Amy Bluel’s father. She wanted to honour his death after he took his own life which an inspiring act in itself. Project Semicolon was the result of tragedy and I’m sure it has saved more than one family from a similar tragedy.

I have had to fight the extreme urge to die too many times in my life. I used to scare my GP as he listened to the things I said to him. I had to get my medication on a daily basis, friends in the local police beat management team took my sharp knives until I could be trusted with them again and I hung on to life even when my grip on reality was at its weakest.

I recovered from that period of depression eventually and I began to gain some stability in my life.

Then the ultra manic episodes began and, during a very intense 90 minutes or so, I had to argue with my own brain just to stay alive. It would shout at me to die, to stop the pain and I would shout back that I knew it would pass if I just held on 10 minutes longer.

I still have those episodes and I’m exhausted for days after they’ve happened. Mental illness is so physical it literally hurts.

The core of Project Semicolon is that “the semicolon represents the continuation of life after struggling with thoughts of suicide and death.”

We could have chosen to stop but we chose to keep going.

I have my semicolon tattoo on my right wrist. During my extreme episodes I look at it and tell myself what it stands for and, alongside with the remembered support of four people I pass successfully through the episodes. Bipolar disorder hasn’t got me yet.

I read a web page today that has the story that Amy Buel took her own life on March 23 this year. I am overcome with sorrow that the woman who gave me so much hope and support has been beaten to death by depression.

Amy and I never spoke, we never exchanged texts and she had no idea I was in this world but we were linked by the fragile thread that all people who experience mental illness are.

I end this with Amy’s own words:

“Just don’t let them forget why I was here because that’s what’s important.”

 

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.

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.

Washing wonders, sadness and getting on with it

A week ago today I got my first automatic washing machine in 23 years. Since then I’ve worked its electric fingers to the bone (I’ve lost count of the loads I’ve fed it but we’re talking 16+) and it’s done it all without a complaint.

Last Saturday I had no clean jeans in my wardrobe and the pair I was wearing I’d had on for a week. I had two clean blouses/shirts, no clean socks and I was running out of briefs (or knickers/shreddies – you choose). I had just put clean bedding on the bed and only had that because a friend had washed it for me.

I’ve had a twin tub for a long time but they are such hard work. You have to swap the laundry from tub to spinner and it never seems to be quite clean. I run out of energy doing this even if it’s only a few loads because it bleeds me dry. So my laundry pile got higher and higher and I felt that I would never be free from it.

Today I don’t have a laundry pile. Between the new machine, my alien dryer, clothes horses and the odd radiator it’s all done and mostly dried. Most of it is ironed too – not because I want to do it but because ironed clothes are easier on the skin when you have eczema.

My kitchen is tidier because it’s new and not falling apart around me so I feel that’s two  things I have more control of.

I still have no control over the rapid cycling, the continued physical tiredness but unable to feel rested because of an over-stimulated, never resting mind. Because of this my eating habits are dire and  I have to accept that this is probably always going to be the way. I’m not giving up on them but having bipolar disorder to this degree means that I either accept my limitations now or being driven half (or closer) to suicide by driving myself too hard.

Self-neglect is both a symptom and an outcome.

The sadness in today comes via a supporter of a vile politician who is entitled, quite rightly, to her own views but when it comes to supporting discrimination against people because of their religion then it’s time to say goodbye to them. I’ve withdrawn quietly from their lives and, as we’ve never met in real life and she’s an ocean away, there will be no confrontation.

And so on we move.

Of Eric and Ogden

At the end of July I had a consultation with a psychiatrist that I’d know fn a long time. I was feeling manic and had done for nearly a year and it had stemmed from an attempt to go medication free. Being medication free is the Holy Grail for most people with mental health problems and it’s something I try to do far too much and each time I say I’ve learned my lesson. It happens again though because I’m desperate to be medication free because that would mean that I no longer had bipolar disorder.

There was a lack of decent communication between me and Eric which meant that, after a precautionary CT scan, a wild manic episode and a visit from a psychiatric nurse I found myself referred to a memory clinic. Luckily I’ve known Eric since he moved to the city and took up his post here and I’m also very good at standing my ground. Years of being an active mental health advocate have armed me well and believe me, if you’ve got Nick Ferrari to cut you off in an interview mid-sentence then you’re a bloody good advocate.

Today I went to see Eric. It’s a long journey – two buses each way – because it’s out on the far edges of town. It’s inconvenient but it’s a beautiful place and the staff are amazing. I was prepared to stand my ground and be firm but polite until I got what I needed which was a revision of my medication and a cancellation of the referral to the memory clinic.

We sat down in a comfortable room beside a small table in a way that our body language indicated both respect and a willingness to listen on both sides and listen we did.

I explained how I felt that, though he’d taken accurate notes at the last meeting, the situations were out of context or in the wrong context entirely. He explained that I’d not explained them as precisely as I thought I had and that what we’d ended up with was us being at cross purposes.

We reviewed the notes and amended them and then he asked me how I wanted my medication changed. We agreed on a crisis plan and decided to increase on of my medications and look towards a long, slow improvement so as to lay in a good foundation for what passes for stability.

It was a good meeting and worth the 3.5 hours it took to get there, have the meeting and get back home.

Ogden hasn’t been left that long for a long time and I was a little worried that he’d fret while I was out or feel that I’d left him. He was amazing and was very happy to see me. He’s since settled back down to his normal sleep 14 hours a day and I can’t be happier about it.

So – a potentially hard day turned out to be less difficult than I thought and I got the result I needed and made a good working relationship even better. My beautiful rescued dog moved forward a step in becoming more secure which is so wonderful. Tomorrow as a treat for us both we’re going for a long walk with a friend and her dog and watching a scour of the local harbour.

Facing up to life can be hard at times but at times it’s worth the while.

Equality and the doctor’s receptionist

This isn’t a terribly coherent post, I just really need to rant or else I’d be tempted to lamp somebody.

I’m a bit angry and I’ve really, really, really bit my tongue hard during a phone conversation I had about half an hour ago.

I have this pain in my left breast and it’s not in one particular part so for a couple of weeks I’ve been thinking nothing of it but it won’t go away and it doesn’t feel muscular so I rang my GP’s surgery to get an appointment.

It’s constantly drummed into us by health professionals that it’s important to get bumps, lumps and twinges checked out when they’re in your breasts (and testicles for men of course) and so that’s why I was ringing.

My GP is on holiday and he’s not back until the day I go away so there’s no way he could ring me back and give me some reassurance or let me pop over and get checked out.

I have two choices it seems – I either ring up at 8.30 tomorrow and see if I win the appointment lottery or I talk to the on call doctor today and be treated like an emergency. I can’t ring up tomorrow because my memory is shot to pieces and if I’m out with the dog I have nothing to make a note on and will have no idea of what time I’m supposed to be there if I’m lucky enough to get an appointment. If.

I asked for a note to be put on my doctor’s screen so when he gets back he can see it because I’m going to have to talk to him about it as, since he’s my key doctor, he looks after the whole of me not just the mental health bit.

This confused the receptionist big time because she wasn’t convinced that she could leave a note for my doctor and ask an on call doctor to ring me. I persuaded her that since the system for appointments etc. was inadequate and that I don’t fit into the options open to me then I needed my GP to get the message and, whether this pain is an emergency or not, I need to talk to somebody about it.

Then the defensive language came – you know the stuff. “I’m just doing my job.” “I can’t change the rules.” “I’m treating everybody equally.”

I wanted to scream at her. The system doesn’t treat everybody equally – it doesn’t leave room for people like me who have complex problems and live alone but it will give priority to physically disabled people but if the disability isn’t obvious then we’re expected to sit in the corner and play with the crayons.

I asked her to feed back that the system is inflexible and inadequate and that I’m sure I’m not the only person that feels that way. Surprise, surprise – I’m not the only one. Will she feed it back? No, because that would be mean going to someone she feels is powerful (and therefore gets to hide behind their power) and acknowledging that an imperfect and inadequate system may seem to promote equality but it actually discriminates.

There is a glass ceiling when it comes to disability and those of us with mental health problems or invisible and/or undiagnosed (I’m trying to handle the news that there may be something wrong with my brain too) hit that ceiling quite early on. It’s as if we’ve brought it on ourselves and that any anger we feel is either a result of our mental health or ingratitude when really it’s more about a desire not to be treated like a pile of shit.

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…

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…