So many months

It’s been almost 3 months and nothing’s changed. It did, slightly, a few months ago when I unilaterally decided to reduce my quetiapine dose from 600mg to 400mg. That didn’t end well; it made me ill almost immediately. And feeling ill I began a battle to see a GP. That took a few weeks. She referred me back to my psychiatriast at Secondary Care. That took a month; no, more. And that was last week.

It’s good to talk about my illness – not just with a health professional but with anyone.

He suggested my most urgent issue was anxiety, which I agree with (but not exclusively). I’ve been in a depression for quite some time now. He suggested I increase the quetiapine dose to its recommended maximum: 800mg. I already have huge issues with weight gain and the other side effects of quetiapine so I said no. His second suggestion was to take lorazepam for the anxiety / OCD I have.

Which I started doing a week ago; the side effects of those have been deeply unpleasant; I’ve spent the past week ‘stoned’, walking around like one of the Undead. The most significant side effect has been incontinence. That alone has determined I stop taking that med. Nothing online suggests this side effect though, which is strange, so it’s probably contra-indicated with one of my existing meds.

Work starts again soon; I’ve absolutely no idea how I’m possibly going to manage that.

Today I’ve managed to avoid crying. And all I want, just now, is to to be hugged; to be held. That’s not too much to ask for, is it?

From: The Thorn by William Wordsworth

“There is a Thorn—it looks so old,

In truth, you’d find it hard to say

How it could ever have been young,

It looks so old and grey…”

 

 

The next nine days.

This is the process for being ‘ill’ and / or ‘in crisis’ in the UK today. I have in the past been told that, if necessary, I am to go to Casualty or ring 999 and ask for an ambulance. As I don’t think I could possibly cope with the wait of several hours for either (assuming either of these would be interested).

My GP surgery has changed the rules for seeing a doctor. Before last month you could turn up at the door for opening time at 8am then wait with the rest of the queue until a GP is free.  Or you could try to book an appointment over the phone; often there would be none free for the next 2 weeks. If there was an appointment free it would invariably be 2 weeks away.

I have a number for the mental health team. Referral appointments for a psychiatrist have always been up to 2 months away.

To reiterate, if I am suicidal and exhibiting other signs of crisis relating to my bipolar / anxiety / OCD I must wait a fortnight to see a doctor.

I have already self-certified myself for having a week off work just before the half term break last week. Which means I must go to work tomorrow or I won’t be paid. I am nowhere near being well enough, mentally (and physically – because mental illnesses have their own physiological friends), to do my job at the standard I have set for myself. That is, as well as anyone else there who doesn’t have a ‘severe mental illness’ such as bipolar disorder.

Technically, I shouldn’t be driving while I am ill, either.

When I do see a GP in 9 days time there will only be two options, because talking therapy is never on the cards: change my meds; sign me off work for x amount of weeks.

Having spent three years trying to get along with quetiapine, Epilim and fluoxetine I am not about to spend the next few months going through withdrawal- and side effects. And I don’t want to put the burden on other staff to cover me in work, even though my manager is very empathetic and helpful (within the realms of employment law). I never think of myself as having a ‘disability’, though this is exactly what I have.

So.. I only have one option, and that is to turn up for work tomorrow, suicidal or not. I am suffering from fatigue, I find it almost impossible to get out of bed, I am trembling, I am confused, I sometimes see shadows, and I continue to put on weight – which makes me feel even more worthless.

Anything could happen in the next nine days. And it probably will.

 

 

 

 

“Plus ça change, plus c’est la même chose.”

Wow, it’s been 3 months since I last wrote here. I have no excuse, though my mood has been relatively stable and I’ve been calm. I’m still not well, of course – there is no cure, just an endless swallowing of tablets – but things could be a lot worse. If anything has got worse then it’s my OCD. And what irks me more than OCD is that people have no idea what it entails; what it is.

Just this week, again, a Facebook friend asked me how OCD is – if at all – more than just a hankering for neatness. How can anyone define OCD in a few sentences? It’s importance. It’s an evil, chronic, debilitating disease with no cure and – as far as I’m aware – no treatment. Vicious, that’s what is is.

I’m managing to get to work; and to stay there. I’ve had little more than a week off work sick in the past 12 months, which frankly is something of a miracle. My ex-psychiatrist once told me I had ‘too strong a work ethic’. Probably true. But if I gave in to bipolar, anxiety or OCD every time one or more of them hit me, I’d be off work constantly.

After starting writing again (another novel) that ground to a – hopefully temporary – halt a few months ago. I’ve been doing research but no actual creative writing. I’m sure it’ll return however. It has to.

I went away for a few days last week, to Tenby, a seaside town with a small harbour, in southwest Wales. I felt almost perfectly well. What was it that made such an effect on me? I wish I knew; maybe exercise, no stress or pressure, warm sunny weather, fresh air and exercise (walking, swimming). Doing things I like to do: writing poetry, taking photos. Sleep.

So that’s where I am at the moment. I still have intrusive suicidal thoughts and rapid mood swings. I’m still taking my meds. I’m still, I don’t mind admitting, very lonely (no relationship of any kind for four years). I’m still carrying on. ‘Steady’ is good. Long live ‘steady’, eh?

 

 

Brief moments of madness

At least my illness is a steady one, most highs and lows (highest and lowest) clipped by the meds. It means that when something does trigger a mood I’m in a good position (hopefully) to work through it.

Unless of course we’re talking about psychosis. However brief and temporary that might be.

One such very brief episode occurred this a couple of evenings ago after a frustrating argument with my son.

Within moments my mood had escalated like a rocket taking off. These moments, if I remember them correctly (or at all), surprise me and I wonder where on earth they come from.

For example, the one I’m talking about now involved two separate obsessions appearing – and disappearing just as quickly. I had an overwhelming urge to saw the coffee table in half. Which let’s face it would have made quite a mess. Sawdust must be hell to get out of a carpet. As long as I keep my sense of humour, eh?

Along with this I had another urge, to stick metal skewers through my throat. Where did that come from, eh? Luckily I don’t own such things. Just those brittle wooden ones for BBQs and they’re locked in the shed.

And just as soon as these obsessions / compulsions arrived, with a breath of air they disappeared again. A welcome characteristic of ultradian cycling.

***

On a different note, my war of attrition against the rat family that set up home beneath my garden – attracted no doubt by the hanging bird feeders – seems to be in its closing stages (for now) thanks to my use of chemical warfare and the employment of mercenary cat infantry. I’d do anything to protect wildlife.. but I draw the line at rats on my property.

 

 

Visual hallucination.

 

A strange night, warm and humid. I slept badly, as always. The difference with last night (in the early hours) is that I had a visual hallucination.

It was a figure, in the darkest part of the room, a yard from my head. The figure was an exaggerated one; marching on the spot, monochrome, side-on to me.

(“All colours will agree in the dark.” – Francis Bacon)

It didn’t appear human. Without lifting my head from the pillow I reached out my hand to touch it, a couple of times. Nothing solid, and no reaction. As unusual as this was, I wasn’t afraid and was too sleepy to react further. I turned over, facing the opposite direction, and fell asleep again. Next time I woke in the night there was no figure there.

 

William Blake, ‘The Ghost of a Flea’.

 

Too long

Too long without an update or a hello here!

I’ve spent much of each day, for a year or more, sedated. This comes from taking my meds as directed: 20mg fluoxetine, 400mg quetiapine each morning. (Then 200mg quetiapine and 500mg of valproate each evening.)

I’m holding down a stressful job, 3 days a week. And it was tough, doing this with a muddled brain that wants to lie down and take a nap every half hour.

It only occurred to me on Monday that I could take all of these meds in the evening, a couple of hours before sleep-time (except the fluoxetine, which is better taken in the morning it seems). So I did this and there was a huge difference immediately! Doing my job whilst awake was a revelation and it also seems to have helped my  anxiety a little too. I have more energy in the daytime too.

Of course, these evening meds should be knocking me out for 10 hours (there are people on Twitter who say 25mg of quetiapine will do this for them). But no, I still haven’t slept right through the night even once in decades.

* * *

I finally got to have my annual blood tests to monitor my meds. A year late. The results were in this week: all ‘normal’ except for my cholesterol, which has always been high, genetically. They were almost 7 before starting the meds and I was quite pleased that they’re ‘only’ 8 now. I was expecting double figures. My GP looked a bit concerned though. My blood pressure is a little high, nothing to write home about. My weight is too much; I’ve put on 2st in the past 2 years+ since starting bipolar meds.

So I agreed to start taking Simvastatin 20mg in an effort to lower the cholesterol level and took the first one last evening. Watch this space..

 

 

 

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.

 

Poem – ‘Check List’

Check List.

 

Mustn’t cross this knife with this

spoon with this fork with this

knife. Must check that window’s

shut now for the tenth time; line

 

of sight not enough must touch

must repeat beneath breath the

mantra, the spell, must put left

shoe on before right must walk

 

upstairs again. Must check the

windows. Must lock the door,

try the handle; time after time

try the handle. Get to the gate,

 

go back check the handle.

Did I shut that bathroom

window? Must go back in

must check must reset the

 

alarm. Make an exit.

 

Poem – ‘I am Full of Bees’

I am full of bees.

 

I am full of bees; every

cell of my being every

breath of my soul aches

 

and pains day and night

night and day ad infinitum.

Gravity is in league with

 

this illness; I’m pulled

down. Down towards the

centre, making my feet

 

heavy, dripping the atoms

that compose me, leaving

me heavy but with little

 

mass. And I’m tired; you

couldn’t even guess how

much I’m tired. I don’t

 

sleep. Never have. Mired

in that sinking sand I’ve

tried everything. Nothing

 

works. My opponent is

me; however the moods

make, take, me. I am

 

full of bees; each cell

buzzing with exhaustion,

creating a sea-swell of hell.