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.

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.

The Co-op, Council, Citizens Advice Bureau & the consequences

This blog is about something that happened a long time ago but I still feel the effects from it even now and it is something I’ll never stop being angry about. It’s not about hurt feelings or dismissive behaviour it’s about the stripping of dignity under the guise of banking policy and voluntary work.

When I lived in Brislington (a bloody awful part of Bristol that pretends to be nice) I was subject to antisocial behaviour from a group of neighbours. It stemmed from the incident where I refused to lend one of them £10 on the night I moved in and they decided that I was a posh snob who had loads of money.

I don’t speak with a local accent but that doesn’t make me posh anymore than the jobs that I did when I was working. Being a PA doesn’t make you posh, being a publican doesn’t make you posh and working as the manager of a shop doesn’t make you posh it just means that you’ve got somewhere. None of those jobs necessarily attract high salaries but obviously those people thought they did.

It started with small things – I’d go down to the laundry at my allotted time to find the machines full. I’d empty the machines to do my laundry and the person concerned would come down and threaten me. I’d speak to the caretaker who always promised to speak to her but never did and then I’d complain to the council who told me I had to try harder to fit in with the neighbourhood.

Shortly after I moved in I was diagnosed with Manic Depression (which has since changed its name to Bipolar Disorder) and then I really began to struggle.

My bank account (with the Co-operative Bank) didn’t allow direct debits and a lot of the work I did was via an agency which meant that in the lean times (and they were regular but that’s another story) I had to sign on and claim housing benefit. If I couldn’t get to the housing office to pay my rent then it disappeared on food and household bills. I was getting more and more into debt each month.

When I opened my account with the Co-operative Bank I specifically told them that under no circumstances should they offer me loans or credit cards because I would take them, mismanage them and become very ill.

They ignored me.

As it became obvious I was struggling their helping hand came in the form of a credit card which had a limit of £750 and thankfully this didn’t increase in the time that I had it. When it became even more obvious that I was struggling harder they insisted that I take out a bank loan to consolidate my debts, paid it into my account at the wrong time of the month and then blamed me for taking money out to buy food, bus fares and to look after my two cats.

The bank told me that my debt was too large to let go (£1,500) and it would always be there to be reclaimed. When my financial adviser spoke to them about it when I registered Lasting Power of Attorney they said they had no trace of the debt.

Meanwhile the situation with my neighbours was escalating. Regularly I returned from work to be showered with a hosepipe or to find piles of rotting food outside my door. In the evenings their kids (some of the in their late teens) would try to see through the curtains of my bedsit (I had to keep them permanently closed by this time) to see if they could see me in my bed. They stole my post and read it to me as I walked past (the police said it was probably just a joke) and I had to pay to have it diverted which cost me money I didn’t have.

By this time I had a credit card I couldn’t pay off, a loan I couldn’t begin to make payments on and I was 10 weeks in arrears on my rent. I was on the point of being evicted and the housing officers visibly made fun of me when I sat in their office and cried whilst begging for help.

A new manager to the area heard this going on one day and took me into his office. I poured my soul out onto his desk and he listened to me carefully. He immediately wrote off my rent debt and four days later I was moving into the flat where I have lived happily for 16 years.

The next step was to acknowledge my illness and then talk to the bank about my debt. When I asked to see someone to talk things over the assistant announced to the world that they weren’t going to give me anymore money. She cut up my cheque book and debit card and told me that I’d have to go to the Citizens Advice Bureau (CAB) for a financial statement and until then they would allow me only what they think I could reasonably live on. I sometimes earned £150 a week and the bank would let me have £45 which was barely enough to keep me alive.

The CAB made a big mess of things. They left off my electricity and water bills off the financial statement and made a big fuss when I said I needed a new one. (Apparently I was asking too much of volunteers to get it right!) My electricity bills stopped arriving at home and, as I was moving on to a prepay meter, it was essential to see them. The CAB had told them, when I had given them permission to speak SWEB to ask them to freeze my debt for a while, that I was incapable of looking after my affairs and to send the bills to them. AS IF THAT WAS A SOLUTION TO ANYTHING.

It came as no surprise that shortly after that I crashed and burned and claimed Incapacity Benefit as a short term thing. Sixteen years later I live with the knowledge that I will never work again and the people who were supposed to help made things worse.

The CAB will tell you how wonderful they are but they will not disclose how many people say how wonderful they aren’t. The Co-operative Bank will claim to be ethical but they don’t understand that ethics is as much about treating customers with dignity as it is about not funding arms dealers. The police in the neighbourhood allowed an ill man to be beaten to death and his body set on fire as his pleas re his neighbours went unheard also. The council still don’t get their act together with neighbours and disputes. Nothing has changed.

I’m now in a safe place in all senses of the word safe but how many people aren’t?

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.

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.