Delusion or truth. Again.

Hallucination or Vision? Age 17-ish

Midnight, I’ve walked to the top of a local hilltop, Twm Barlwm with my best friend. The news headlines the evening before was a new Middle East war. Despite not being religious we decide to pray for peace. I do this with the Lord’s Prayer, silently to myself. At the end of this I feel a firm hand on my right shoulder. I assume it’s my friend but on opening my eyes I see he is some distance from me.

A thick fog has enveloped the hill, with a visibility of just a few feet. We are on a hilltop with fog and darkness all around us. There’s the sound of a sheep, or a lamb, which we decide to follow. It leads us all the way down the hill, bleating continually so we can follow as we’ve not seen this creature.

Getting back to the house in the early hours of morning the radio says a ceasefire in the war has just been declared.

 

 

 

Vision or hallucination? Age 17-ish

Late at night, I have just left my girlfriend’s house to walk the half a mile home. It’s a clear night, bright and dry. Fifty yards from her house I stop still as there is a bright light in the night sky – not a star, but the planet Venus. I don’t know how long I stop there, transfixed. Several minutes, not that long.

The star tells me a story: the meaning of Love. I return to my girlfriend’s house, make myself unwelcome as it’s quite late now. In the kitchen I proceed to tell her all about Love as transmitted to me. This takes an hour or so of manic speech. I eventually leave, and run home – ecstatic, full of intense energy and happiness – jumping off walls, climbing over obstacles, unable to wear myself out.

Some years later I discover this story was a re-telling of Plato’s Symposium, something I’d obviously never read at that age and indeed had had no exposure to.

 

 

Progress, or lack of such

To be honest, I thought I’d have seen more progress by now. Three years after CBT started (it lasted about 8 months) and just over two years since I began taking meds. These have changed and dosages upped several times to where they remain steady at the moment. Daily: 600mg quetiapine, 20mg fluoxetine, 500mg sodium valproate.

And yes, they’ve topped and tailed my more extreme moods. In that respect there’s been significant progress. I still get frequent – and fleeting – suicidal ideation, but I don’t have the strength and wherewithal to actually do anything about it. I tend to ere on the side of caution and add ‘yet’ to that statement. It wouldn’t do to think I’m cured. I know there’s going to be no such thing.

So two years.. I’m holding down my job and – I think – doing well at it. My team gives me some support by way of accepting and dealing with my many cognitive and memory issues that pop up daily more than once.

I have no-one to talk to about my illness; at least, not in detail. Twitter remains a source of support, albeit from people I’ve never met and never will meet. There are loads of us on there exposing our souls and craving help and attention. Whenever it’s good to talk, Twitter offers a (usually) one-directional ‘conversation’ outlet. I have no input from my GP or any other medical service. I saw a psychiatrist last before the summer but that was only because my GP referred me due to a down-turn in moods. I have no future appointment set.

It would be interesting to see if I could hold-down a relationship at this point in my treatment. Bipolar destroyed all the romantic relationships I’ve ever had, and I still feel so bad about that. Some of these were good for me, and I let them go through my – admittedly uncontrollable – moods. As it stands now, three years since talking therapy began and just over two years since meds started, I have no such relationship. Indeed, I’ve not had a girlfriend (or even a date!) in two and a half years. That’s the meds for you; I’ve been stripped of emotions, feelings, libido and effort. I create no writing work, and barely any art work – the things that I’ve always done and done well.

I don’t really live; I exist. And even then, there are occasions when I get hypomanic and don’t even believe that. I exist with moods and delusions, my physical health has taken a hard knock (illness and meds) and I generally ache all over 24/7. I still don’t sleep. My short term memory is f*$*&d, basically. I’ve put on a couple of stone in weight since starting the meds but from looking at other people’s experiences I could have put on an awful lot more. Who knows, maybe I will? I’ve had to get rid of a load of clothes and start acquiring from scratch. (Though that’s actually been quite therapeutic!)

The biggest shock to me lately has been a letter from the Pensions people; I still have 9 more years to work in this stressful job. Until I’m over 66. How the hell’s that going to happen? I’m living day to day. Small mercies.

 

 

 

 

 

 

 

Poem – ‘Sunday, so’

Sunday, so.

 

 

 

I’m ill today. I know I

say that every Sunday

but it’s true, I do.

 

I’m low today; I know

there’s nothing new to

tell you, but I’m low.

 

So the wind swings

from the autumn trees,

I ache from head to

 

toe, that’s so. Elbows,

fingers, knees and toes,

the sort of pain that

 

lingers throughout the

day and blinds the night.

I’m right, I’m ill today.

 

Afterthought on a few flies in the ointment

The biggest problem I’ve found is that no-one talks to each other – therapists, GPs, psychs, Primary- and Secondary Care professionals.There’s no ‘joined up thinking’ and loads of bureaucracy. And no targeted support. I’d have patients assigned to specific care providers who can manage their treatment and support. A sort of life coach, nopt necessarily providing treatment but giving support, information and guidance. It would be no different from having a GP or dentist or optician. They might have many patients each, depending on various factors, but at least you’d know who to go to for help. And know that that person has your complete record to hand rather than it being split up and divided between various people who don’t share all the information.

After a year of ‘treatment’ the only advice I’ve ever been given if I am ‘in crisis’ or suicidal is to go to Casualty (uh yeah, I’m trying not to kill myself but I’ll just drive to the hospital and try to find somewhere to park first shall I?) or ring 999. I’m sure an ambulance will be here within the hour or 2.

Peer support seems to be almost totally ignored as an aid. And surely that’s a cheap option too?

It goes on..

The CBT continues, fortnightly now rather than weekly. I know the theory well and can anticipate the answers my therapist requires. This whole theory works on anxiety generally, I can see that. What it isn’t working on is everything related to bipolar.

I can only, consciously, attempt to affect those moods that are triggered by actions. Those moments I am aware of. In the moment of.

But bipolar doesn’t work like that; there are no warnings of hypomania, no consciousness when in the state itself. Then, I’m unaware of what I think, say, do. How I act, often. I only know of those times in hindsight, when I get to reflect and to mop up. Metaphorically speaking.

My therapist wants me to ‘notice’ when I become hypomanic. I can’t. Often I’ll know I’m high rather than low. But this is when transitioning from my default position (I’m loathed to call it ‘normal’) towards hypomania or depression. I could attempt to change the moods within that transitioning, but once I’ve crossed the line, I’m out of it. Not me anymore.

And not me anymore is where it gets interesting. And dangerous. And scary. Where that other – those other – personalities come out to play. And they’re not nice. It takes every ounce of effort (subconsciously – I have an effective Super Ego that does its job properly) to remain myself, to stay in the light.

He wants me to access that dark character – those dark characters – who’s part of me. He says let him (?) out, see what happens. That’s not going to happen; I’m never going to let it happen. I might lose Consciousness. Control. It takes great effort to hang on. To hang in there. A couple of weeks ago, walking near the curb with a lorry approaching at speed, I all but stepped out into the road. Because I was hypomanic and it seemed the right thing to do at the time. Because that’s what one does in a good mood, isn’t it? Hell, yeah!

And that’s without accessing the dark side(s) of me.

Therapists, eh?

Who to tell?

I told my Manager in work a few months ago, my thinking being that 1) I sort of owed it to them 2) I would then be covered by the Disability Rights Act 3) if I had to have time off work I wouldn’t have to lie that I had a bug, or a sore foot, or plague.

But it took months of prevaricating before I finally found the strength to tell my 12 year old son. It was a difficult job, but I’m glad I did so, and it’s made things easier for both of us. He obviously suspected something was (medically) wrong with me. ‘Is that why you get annoyed about little things sometimes?’ Yes, indeed it is.

Very few people other than Mental Healthcare professionals know about my illness, even after 35+ years. Less than half a dozen, I should think.

And that’s why this anonymous talking I do here sporadically is so important to me. It’s almost entirely one-sided of course. I don’t know or talk with, in the real world, anyone else with bipolar. I never get to discuss it with anyone other than my therapist. And the psychiatrist on those 2 occasions; not that I’d feel comfortable telling her much. (See previous post.)

So if you’re reading this, if you’re following these posts of mine, I thank you; honestly, from my heart. It helps to know you’re there. You don’t know me, I don’t know you. You’re what my favourite band – Mew – calls ‘Frengers’: not quite friends but more than strangers.

Sometime I might disappear. Who knows. It’s my birthday tomorrow.

Been a long long..

Last post was ages ago. I was waiting for my Assessment meeting, hoping for diagnosis. Obviously that was overly optimistic, due to me knowing nothing of the system back then.

Things have changed a bit in the past 6 months.

I’m on Week 13 of CBT to address my anxiety (as opposed to my bipolar issues). It’s going ok, but it isn’t helping one iota with the lows, the highs, the suicidal thoughts, the despair. I learnt the general idea of CBT in no time; recognise one’s ‘bad thoughts’ and turn them into ‘good thoughts’. Theory’s great, isn’t it?!

Some other, scary, stuff has surfaced. Physical and psychological abuse going back to childhood, from my mother. Nothing sexual has surfaced.

I come out of some sessions exhausted. Sometimes they trigger hypomanic episodes.

I’ve seen the psychiatrist twice. I almost walked out that first time; she was arrogant, unprofessional (imho), confrontational, unhelpful and with no empathy whatsoever. She told me there was no chance of getting a diagnosis; there were only a few doctors in the Authority assigned to such a thing and thousands waiting for diagnosis already.

She wrote down the names of 4 medications and suggested I go home and Google them to see which one I fancied trying (yes, really). Lithium… hmm, don’t think so. Quetiapine… I think not. At the end of the day I have to get up early and go to work, do that job whilst alert, and more importantly keep that job and not spend months at a time ‘on the sick’ for fear of losing that job. I’m a single parent 50% of the time too.

Same goes for treating my chronic insomnia (I haven’t slept right through the night even once in 20 years); I have to get up at 6.30am for work or the school run. Sleeping tablets aren’t conducive to such social commitments.

So at our 2nd meeting I had to decline the offer of medication for my (undiagnosed) bipolar II. And go with the CBT for now. After all, I’m still alive after a lifetime of this illness. And as the psychiatrist said, I shouldn’t have such a strong work ethic, should I?

I contacted MIND to see what courses and support it could give me. As with the ‘system’, those of us who fight to hold down a job aren’t catered for; the courses happen during office hours, on the whole.

When the CBT ends, which of course it will do, I’ll be dealing with this again with no treatment or support. As if the past year+ of seeking treatment and support has never existed.

Who knows what the answer is? I’m not even certain of the question.

Secondary care assessment & diagnosis

The waiting is almost over.. possibly. Having presented myself to my GP in early July this year and handed over a letter detailing my lifelong (I am in my 50s) undiagnosed and untreated mental illness, my Secondary Care assessment and diagnosis appointment is next Monday.

I haven’t been to work this week, just couldn’t leave the house. Particularly having slept so very little; racing thoughts, agitated, OCD at 2am and every hour thereafter.

If you’ve been following my random posts on this blog you’ll have heard me say that this diagnosis is almost certain to be one of Bipolar II, possibly with some other issues.

Since I was discharged by Primary Care (after a few appointments) 6-8 weeks ago (because Secondary- had taken me on) I have had no support at all but my health continues to decline quite markedly. Hence the reason for my GP visit.

Actually there was advice, of sorts, to tide me over: ‘if in crisis, go to A&E or ring the Samaritans.’

Needless to say, this hasn’t been any comfort to me during these weeks of ups, downs and – more frequently – mixed states. They’re the most dangerous of course, as you’ll probably know.

So, next Monday.

See you on the other side!

When all else fails

Sometimes I just cry. Because it’s not like there’s much of a choice.

Except in the mixed states.. then the choice doesn’t bear thinking about too much.

This is such a time.

Disclosure

Although my Secondary Care assessment and diagnosis appointment isn’t for another 5 weeks yet, I decided (while lying awake at 4am) that I would make a ‘gesture of trust’ with my boss in work and talk to her about what’s been happening to me since I approached my GP in early July this year.

So I gave her the very short version; that bets were now off on me getting a diagnosis of bipolar II and had in fact had this all my aduly life, 35 years or so, without getting any help, advice or treatment.

My thinking about revealing this now was that I would be able to access some Occupational Health support and would be protected by the Disability Rights Act if not now then after late November.

She was very supportive, or at least suggested such. Time will tell..