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.

 

 

 

 

Suicide

Historically my ‘suicidal ideation’ has been extremely intrusive. Sudden and severe, but thankfully very brief episodes with enough space in-between them to make them manageable with the decades of experience I have of doing so.

But the past three days I have been constantly suicidal without breaks, without relief from the exhaustion that carrying this huge weight around – physically as well as mentally – burdens me with. It’s so bloody tiring.

 

Suicide.

 

I’ve spent three days, now, under a cloud

blackbirds have flown into existence. It

 

wraps me in a colourless silk stripping me

of every nerve, every piece of me. I could

 

pull death over me; dive into its net and

drown in the wet ocean of dead fishes,

effortlessly.

 

Crisis? What crisis?

I’ve spent yet another week off work, feeling very unwell. Mood extremely low, I’ve slept very late each day (on and off). What to do about it?

I’ve made an appointment to see my GP. Soonest one available was for 2 weeks time. I rang the Crisis number I’ve been given for the Mental Health assessment team – I have an appointment for 21st JANUARY! That’s >7 weeks away. I will have to go back to work tomorrow even though I feel totally unable to do my job at the moment. I’ll have my obligatory ‘return to work’ meeting with my line manager and will request a referral to the Occupational Health doctor.

I feel very guilty I’ve missed even more time off work; I miss some of every month now, and I only work part time – albeit in a very busy and stressful professional job.

Who knows what scope there is to adjust my meds; there’s no way I’m going to allow a GP or even a locum GP medicate my bipolar. I am still on my Epilim starting dose which is now a low dose probably adjustable upwards. I could really do with some extended time away from work again – I’ll discuss that with the GP in a couple of weeks.

In the meantime, I just slog on, feeling very unwell. Mood changes rapidly and without warning, and I have very intrusive suicidal thoughts.

I have no idea what the answer is to all this. All I know is that I need help more than ever.

I don’t feel well.

Even when my mental health has been relatively stable, there is still physical illness most of the time. ‘I don’t feel well’ is a sentence loaded with meaning and insight. I don’t feel well can encompass a load of symptoms, often little I can put my finger on.

Tiredness – no, utter exhaustion. Myriad aches and pains, especially in my joints. Chest pains (reflux, pain could be anywhere in the torso and feels serious). Confused, total lack of energy, agoraphobia, sleepiness but as usual waking often in the middle of bizarre, hyper-real, repetitive dreams (I go to the same place every night).

I don’t feel well. An ache in the pit of my stomach. Lower back pain – I’ve had medication in the past for a worn disc that wasn’t deemed serious enough for surgery.

Guilt and a sense of futility at how much weight I’ve put on since starting meds a few years ago: 600mg quetiapine; 20mg fluoxetine; 500mg valproate. Probably enough to stun a small horse!

I don’t feel well. I’m tired, I can’t get out of bed. I have to get out of bed to go to my stressful job which I have no idea how I’m managing to hold down.

Just: I don’t feel well.

 

Those manic moments

A few things I’ve done whilst manic:

 

1. As a young child, had a ‘vision’ that Jesus had leprosy. Also, at nursery school, had another ‘vision’ with depersonalisation.

 

2. As a teenager, had other religious ‘visions’ including psychosis.

 

3. As a teenager, the planet Venus told me (in compressed time) the philosophy of Plato’s ‘Symposium’.

 

4. Got married. (It didn’t last.)

 

5. Bought a one-way flight ticket to India. (And used it.)

 

6. Been a total slut.

 

7. Marched up and down the living room wielding a large kitchen knife, frequently stabbing the dining table.

 

8. Had various delusions, most of which I still have (to some extent) despite meds.

 

9. Bulk bought: cheap wristwatches; USB pen drives; clothing; etc.

 

10. Written what I estimate to be more than a million words since my teenage years: fiction (several novels), poetry (thousands – many published), reviews, plays, etc.

 

11. Wrote a 70k word autobiography in two weeks at the age of 20-ish despite nothing actually having happened in my life at that point.

 

12. Made 20+ ensō paintings in 10 mins or so (total). The lawn was covered with them.

 

13. Driven up to the Black Mountains obsessively, 3x a week for a couple of months.

 

14. Danced on a table in the staff room at lunchtime. No-one seemed to notice.

 

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.

 

 

 

 

 

 

 

When it happens, it will be

 

When it happens.

 

 

I will die on a Sunday, when the crisp
web of a dewy morning sparkles,
heavy as rope.

It will rain, and its perseverance will
hammer heavy on my soul.

I will die on a Sunday, and Monday
will be empty but for a silence; a
sadness that evades sentiment but

evokes melancholy amongst the few.

* * *

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 – ‘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.

 

 

Meds update

I’m on a relatively recent cocktail of meds now and overall they’re doing their job. The side effects are substantial, significant. I continue to pile on the weight (quetiapine). I ache literally in every cell of my body, constantly. I’m sedated much if not all of the time. I still don’t sleep through the night.

20mg of fluoxetine caps the low moods. 600mg of quetiapine stops the psychosis and the high / mixed moods pretty successfully. (Though see my other post of today.) And the latest, 500mg of valproate stabilises my mood. These three meds seem to have made friends though they gang up to bully me now and then. They know I need them.

I still have ‘extremely intrusive suicidal ideation’. I still have ‘rapid and uncontrolable mood fluctuation’. But regarding the former, I can control it more (hopefully – time will tell). And the latter, the valproate seems to have gone in with fists flying there.

It’s taken months to get the GP surgery and local pharmacy to get my (psychiatrists’) prescription right. This has caused me a lot of stress and worry. It’s isn’t rocket science; it’s a straightforward repeat prescription that should take moments to set up. So far it’s been 3 or 4 months of getting it wrong. Three or four months of stress. I wrote my GP surgery a begging letter recently, imploring him/her to get the ‘script’ sorted. I can do without the hassle basically.

I speak to no-one about my illness. No professional has come forward to offer me counselling or has even offered an ear. It’s all bottled up, and I hold down a stressful job because I hate the thought of being defeated by the evil bipolar monster. I’ve spent the day shaking and confused (again, see my other post of today). Got home, had a couple of glasses of wine, took my meds. Is it bedtime yet?