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.

 

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Exhausted

‘You want to know why I feel exhausted?’ I asked.

‘No, not really. But go on, if you must..’

I haven’t slept right through the night even once in perhaps 30 years. Not once. I ache down to my very soul; if you thought bipolar is solely a mental illness then you’re mistaken. It’s also a physiological illness, a painful one. Between the disease and the medications they pound away at muscles, joints and bones 24/7.

Then I have to hold down a job. A stressful job at that. And when I’m not holding down a job I have to run a house and be a single parent. Not wanting to end up living in a sty that has hundreds of baked bean cans stacked on the stairs or newspapers going back to the 80s, I have to cook and clean the same as the rest of you. Pride, necessity. Being civilised and human, I guess.

And the moods.. they’re all over the place as I have a layered illness, that’s the best I can describe it. I might be hypomanic for months and depressed for months but on top of this I have acute shifts in mood, often very brief intrusions of one mood type upon another. Ultra-rapid cycling. Ultradian.

That means my mood can shift dramatically within one day: periods of hypomania and periods of depression, and most significantly periods of mixed-mood which for me are always the most dangerous and unwanted. When I’m mixed I am depressed enough to want to die but high enough to be able to make such a thing happen.

Today I stood by the kerb at a pedestrian crossing. Lorries were thundering past at 30mph and it took all that I had not to take one step forward just as the next lorry was approaching. Fighting this urge is exhausting. On the way to the crossing I’d experienced some kind of hallucination (more than, I think, a delusion per se) where I was suddenly walking along seeing the ground from 7’+ high. I’m 5’ 5”. That lasted just a few seconds, but dealing with this was tiring nonetheless.

It’s all one thing on top of another. Chronic, acute, a bit of this a bit of that.

Then there’s the meds: 20mg of fluoxetine in the morning (slightly sedating) with 100mg of quetiapine (more sedating). Then another 200mg of quetiapine mid-afternoon, followed by yet another 200mg of quetiapine in the evening.

This isn’t even a lot of meds for someone with bipolar (plus anxiety and OCD). I’ve met people who are taking 15+ doses of meds per day.

Spending most of the day (and night) sedated is physically wearing. I have to fight myself to leave the house, to walk, to exercise. To live rather than simply to exist. Plus, I self-medicate with alcohol by late afternoon though thankfully I’m in control of this and I manage to keep within my weekly recommended consumption as an adult male. That’s a miracle in itself!

I have to put on a brave face, a smile for my son so he doesn’t worry about me too much. This act requires energy and focus and tires me out also.

All of this, and more. Not just for a day, a week, a month, a year; I’ve been battling this more seriously for a couple of decades and on the whole since my late teens and indeed probably my childhood. I’ve only been on meds for several months, only sought treatment 2 years ago.

Everything I’ve described happens almost every day. Most of it happens every day.

It’s no wonder I feel exhausted.

 

Frustration and Hypomania

Horrendous week so far. A weekend of hypomania followed swiftly by a mixed state for the past four days. Sleep.. what’s that? Awake 2.22am.. and looked at my car’s ‘how many miles before fuel needed’ display: 222.

Magical Thinking is one of several things that manifests itself when hypomanic/mixed. But that’s interesting rather than a nuisance. What is a nuisance is the OCD that steps up several gears whilst in these moods. Oh, and the anxiety.

And what really isn’t helping is that I rang for an appointment with my psychiatrist (to start meds) a fortnight ago. Nothing happened so I rang again last week. Nothing’s happened again. Which means I’m going to have to ring a 3rd time.. Do they not realize that this kind of behaviour is not what we need??

And my ‘discharge papers’ arrived now the CBT has finished, from Secondary- back to Primary Care. Which means I’m having no treatment, support or guidance whatsoever at the moment.

As I said, horrendous week..

MH letter

One year on and has anything changed?

Well here I am a year after finally getting the nerve to tell my GP about my lifelong bipolar II. Thirty-four years of history when I handed over the letter; I really didn’t think I could convey all that ‘stuff’ verbally.

Some of this past year I’ve blogged here, though there are many gaps.

I’ve been having CBT for the past 6 months+ and my final session was last week. Why has it ended? No idea; that wasn’t discussed. I assume money and caseload.

After seeing the psychiatrist again a few months ago, and being given at that meeting a handwritten note of four meds (which I was to take away and Google, then pick one to start on – something I still find utterly bizarre), I am at the moment back where I started a year ago.

With the final CBT session completed, it means I have now been discharged from Secondary Care back to Primary-. Though in effect all that means is I am having no input, support, guidance or treatment at all.

I have um’ed and ah’d about starting meds for these past few months as I am managing to (just about, at times) hold down a professional job along with being a single parent 50% of the week. Lithium was my first choice from the list, only because it seems to have the least side effects (well, until my thyroid and kidneys implode). The psych’s first choice – Quetiapine – seems to be, online including social media at least, universally criticised. I really have no desire to become Mr Blobby by Christmas.

Regarding Lithium, I also worry about my driving licence being revoked by DVLA. I need to be able to drive, to do my job and to be a parent at the mercy of the School Run.

If I decide to battle through this once more by myself, perhaps with occasional random input from Primary Care services, then what was the point of the past year? I really cannot go on an awful lot longer feeling like this. I’m not as physically- and mentally strong as I used to be. Plus, I’ve driven away everyone I’ve ever loved, or those who have loved me. Apart from my son. I have no-one for support. No-one to talk to when – like today – I am being torn apart at every level by bipolar anxiety which is cooking up a new batch of mixed mood several times a day.

‘You shouldn’t have such a strong work ethic’, the psychiatrist told me. I’ve learnt of course that ‘the system’ isn’t designed for those BP people who are managing to hold down a job. There are no groups, clubs, meetings in the evenings or weekends; outside normal office hours.

I keep being told by healthcare professionals ‘you wouldn’t believe how many doctors, lawyers, teachers etc… are bipolar and taking [meds].’

I’ve asked for another psychiatrist appointment, which will take a month or so to manifest. At this moment in time I intend to begin Quetiapine. I’ve turned down the recommendation/offer of beta blockers for my anxiety as I’m going to investigate first whether it actually is BP-related. If it is and the Q works, then bingo. Buy one get one free.

As I keep saying…. watch this space.

The week from hell. Again.

A horrible, horrible week that hasn’t ended yet. Starting from a 2+ week bout of hypomania, anxiety and OCD – this is long for me, I only know ultra rapid cycling – last Sunday morning I crashed back down in an instant. It only took a minute. No, less than that; seconds. Flick of a switch, a chemical canal that burst its banks and which o’erleaps itself.

I don’t really know everything I think and do during highs. My default position, as my therapist keeps letting me tell him, is depressed. I’ve had that all my adult life, thirty-five years or so, I at least understand it and it isn’t much of a threat to me. Well, nit physically. No, what’s dangerous, what IS a threat to me, is the mixed state that sits between the high and the low. It inhabits a few rungs of the ladder, though I usually tread them coming down, rather than going up. I think.

So last Sunday, after that sudden crash which came with absolutely no signs, no warnings, there was a space of time – maybe 2-3 hours? – where anything might have happened.

In the Koran there’s a passage I’ve always known (it’s not my religion; I’m a nominal buddhist): ‘Does there not pass over a man a space of time when his life is a blank?’ I’d always assumed this was in sleep, in dreams. But I was told by an Imam on a Kashmir houseboat that it refers to the time one spends in the womb.

Last Sunday, I spent a few hours living in a blank of a different kind.

I’m generally (but not always) only suicidal when in a mixed state. As it’s been pointed out many times, it’s then when you’re depressed enough to want to die but high enough to think it’s a great idea and to have the capacity to make it happen. Hell, yeah!

2-3 hours.. longer than usual, for me.

I’m not going to describe that time in any more detail now. It was tough. I don’t need to tell YOU that.

And out of the mixed into the low. Usually this is moderate. There’ll be a high along soon to ensure I don’t climb too far down the ladder. But I kept walking last Sunday. Three rungs from the ground (I know that place, I can handle that place).. but then two.. one.

One?! I haven’t been one rung from the ground for some years. OK, it’ll go away soon.

It didn’t go away soon. Sunday – always by far my worse day – I went to bed. Monday, I didn’t get up for a while. Ditto Tuesday. Wednesday. I didn’t go to work; I’ll deal with the fallout of that on Monday.

I ate a meal sometime last Saturday. I ate a meal yesterday. I grazed for five days, not much. And I slept a lot; which considering I have had chronic insomnia for a couple of decades (those damn highs in the night!) were sort of a plus point of the whole experience.
But it’s a week later, almost, and I’m still in that place. This is highly unusual for me. Therapy yesterday was awful; traumatic. Breakdown, bottom-rung.

I’m being stubborn – or as my psychiatrist puts it, I have too strong a work ethic – and have refused to start meds. Surely I won’t be able to go to work, hold down a good job (I have a professional position), be a single parent, drive, write, think, on meds? I have no idea; no-one’s talked to me about it. I don’t speak to anyone other than my therapist about these matters.

I was offered Quetiapine, which appears to have every side effect known to humankind attached to its use. I was offered Lithium, which seems to have fewer but potentially more serious side effects. I’ve decided to go back to her and admit defeat. I can’t do this anymore, I really can’t. I’ll say yes to Lithium and wave goodbye to my kidneys.

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.