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.

 

 

 

 

Messing with medication

Nothing has happened, life goes on. I’m managing to stay in work (do I have a choice?) but at home housework is getting on top of me and I can’t keep up.

Last week I decided, unilaterally (I’m not in touch with my GP or Secondary Care), to reduce my daily dosage of quetiapine (anti-psychotic, for bipolar / depression / obsession-compulsion). I was on 600mg which I took in the late evening so it didn’t mess with my day. That was the thinking, anyhow.

(I’ve kept the fluoxetine at 20mg a day and the Epilim at a gram.)

So I dropped ot to 400mg a day and for a few days all was fine. Then the side effects of withdrawal kicked in: extreme tiredness and fatigue; sweats; dizziness / feeling faint; increase in anxiety; some – manageable – suicidal ideation.

The ideal would be to reduce the quetiapine down to 200mg a day but that depends of course on whether or not I can weather the storm of this current reduction in dosage. I’d also like to reduce the Epilim to 500mg.

The best time to do this would be at the start of the long summer break. Watch this space.

 

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.

 

“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?

 

 

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.

 

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.

 

 

Not a lot

A long period of silence here. Things go on, nothing really changes though the summer break has finished and I’ve now returned to work.

The first few days left me exhausted despite them involving very little work. Maybe it’s the getting up early added to the usual insomnia and other sleep issues?

Mood is relatively stable, though last week I got stuck in a prolonged bout of suicidal ideation. I judge these thoughts by imagining I have a button next to me I could push for instant death; how often I would do this tells me how my low- or mixed mood is.

Aiming at – as usual – trying to keep a 100% work record, no sickness leave. I do well, and Management knows it; my line manager says he doesn’t know how I manage to come into work at all, let alone be there and do my (teaching) job satisfactorily and even do it to a high standard. I surprise myself at how I manage to hold down a professional post, albeit part time (60%) now.

I also seem to have (touch wood) levelled out with how much weight I’ve gained since starting meds 3 years ago – Fluoxetine, Valproate, Quetiapine. I’m not losing weight, just gaining it more slowly.

Life isn’t easy. It isn’t easy if one doesn’t have a mental illness. As Samuel Beckett put it:

“I can’t go on. I’ll go on.”

 

 

 

 

Forever on my mind.

It’s all this iceberg.