“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.

Been a while..

No news, as they say, is good news. And in this case, that’s correct.

I’ve been pretty stable all through the Christmas season. Minimal suicidal ideation, a little anxiety, some [bipolar] dissociation, and the usual (relatively) low-level OCD.

That’s how unpredictable mental illness is; a renowned ‘stressful’ time can have little effect, whereas a ‘manageable’ time can see symptoms escalate wildly.

The meds are working, it must be said. Talking therapy would be useful, but that’s not going to happen.

I’ve even been tempted to begin writing again (a 4th P.I. Wall crime novel) but I’m not painting; there has been some collage work and poem-writing however.

Work can be very stressful, especially with us waiting on ESTYN to re-inspect us.

I continue to become physically less fit, and the meds are still making me put on weight. Swings and roundabouts, I guess.

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.

 

10 tips

My advice, from experience:

1. Allow yourself, wherever possible, to be not well. Some days are like that; in fact many days are like that. But it’s easy to feel guilty handing your day over to something outside your control. If you have a job, it’s even more difficult. But on those not well days, take it easy: watch TV for too long; don’t shower if it’s not essential (and when is it essential?); indulge, mindfully, in your drug of choice later in the day (thanks, I’ll have a kir or white wine).

2. Get some sleep. Preferably at night. OK, so this is totally outside our control and I really don’t know what the answer for insomnia is. Mine is chronic and seemingly without reason. It used to be worsened by night-time hypomania but I’m medicated now.

3. Speaking of which, always – always – take your meds. Don’t change the dose without consulting your psychiatrist / doctor. Follow your medication programme closely. And if you’re bipolar then why aren’t you on meds?!

4. Exercise isn’t the be-all and end-all; sure, a little walk on a sunny day isn’t going to hurt you. I discovered quite recently that too much exercise can trigger hypomania. So before you decide to climb that mountain, take heed to allow plenty of time and be mindful the whole time that you – not your illness – are in charge.

5. Treat yourself. Indulge in those treats that ease your moods. Could be music – those old favourite tunes – could be chocolate (tell me about it..), could be a glass of wine (go easy, young fellow!). Don’t let it be anything destructive; hypomania rules that part of you so stand up to it, show it who’s boss. In theory at least.

6. If you must buy loads of crap, buy cheap crap. And no, that Harley is definitely not cheap, even if it is cheaper than a yacht. I bought four USB drives the other day, didn’t need any of them but I can handle a £20 hit and they’ll get used eventually. Maybe not in my lifetime, but eventually.

7. Do what the Walker Brothers and Edith Piaf told us and have no regrets. Don’t obsess on things. Just learn from things.

8. Try not to kill yourself; it leaves a hell of a mess and doesn’t achieve much. It also means you’ve lost.. and you’re not a loser are you?

9. Talk about it. Preferably to someone with ears.

10. Get a grip. Do what it takes to stay sane. Yes, of course it’s a battle. A daily battle. Focus on the endgame: not the battle but the war. Be who you are.

22 of them

Time passing fast, almost the end of January.

I’ve been pretty much discharged by my psychiatrist as I’m seemingly one of her success stories; the meds appear to be working. The fluoxetine is clipping the extreme lows, with Quetiapine helping it out and of course clipping the highs as it does so. Poor overworked Q!

I returned to work at the end of last July, just before schoool broke up for the 6 week summer break. And I’m still there, having not missed a single day so far. That’s how stubborn, some would say how strong, I am. I’ve had a lifetime, middle-50 years, fighting, struggling, but ultimately winning.

It takes concentration, a continual fight, to exist. Yes, that’s what it comes down to: maintaining existence.

My enemy (well, part of the pack) is still that damned intrusive suicidal ideation that looks for any glitch in the system, any gap atomically small. And says “hey, do it! Why wouldn’t you?”

Why wouldn’t I.

And I’m in this war alone; single for almost 2 years. Almost friendless, alone. I was pretty much discharged by my psychiatrist at my latest appointment in the shadow of the New Year. Now I really am on my own. Me and my meds. Featuring battles such as “fat or mad” – I continue to put on weight despite my best efforts.

I don’t trust the meds; it would be extremely foolish to do so. Madness still breathes and creeps inside me. I still don’t sleep. I’m sedated much of the time, I’ve stopped writing (poetry, fiction). Meds and me, we’re like that chess game in “The Seventh Seal”.

 

 

2017

2017 resolution? Well, being strong; keep on keeping on fighting against this:

So long ago. So clear?

This October has marked one year since I began taking Quetiapine (Seroquel) and yesterday my son told me I am very much better (“nicer”) than I was thirteen months+ ago. Personally, I can’t see it, though I’m aware that the meds have worked their virtual miracle on my out of control, life-long bipolar symptoms. I have no reference point to ‘getting well’ as I’ve never been well.

Although I only sought medical and psychiatric help two years ago, at the age of 54, I can recall mood swings and what I now assume were brief psychotic episodes back to the age of four. So then, a half century of bipolar and depression, untreated and ignored by those who knew me. Who know me.

Having had eight months off from my stressful job last year, I have managed to stick at it for a couple of months now without missing a single day. I’m stubborn; I won’t let bipolar dictate its terms to me anymore. I must have always been stubborn, otherwise I’d have sought help before now. Actually, as you’ll know if you’ve been reading this sporadic blog (sorry), I did present myself to my GP when I was 20 with severe depression. He told me: “Pull yourself together” and sent me away without help. I was so embarrassed I waited almost a quarter of a century before handing my current GP a letter detailing my illness.

I know exactly when the light bulb above my head lit up regarding bipolar. I’d tried several different anti-depressants over the years for reactive depression: divorces, deaths in the family. That kind of thing. But these meds had made me ill; none of them worked. Then I read a book called ‘Why Am I Still Depressed?’ and it all made sense.

Which brings me to October 2016 and twelve months of Quetiapine (and at some point the addition of fluoxetine). The Q dose crept up and I now take between 500-550mg a day in three or four doses; the days I’m in work I take that extra 50mg for anxiety.

The biggest issue for me has been the Fat or Mad? decision. It became apparent early on that I had to make a choice, and I chose not to be mad. So in a year I’ve gained over a stone in weight and my general fitness has suffered greatly. No-one talks about the physiological symptoms of bipolar, but they’re very much there. I’m sedated half the day and I ache like hell from tip to toe.

I still don’t sleep through the night, not by a long way. I wake every hour or so then fall asleep again quickly. My anxiety level is still higher than I expected it to be by now, and my mild OCD with it. The meds haven’t really touched the OCD at all. Neither did the nine months of CBT I received last year before starting meds.

I look back on hypomanic and manic phases with more embarrassment and utter bewilderment. How on Earth was that person me? A stupid question as I have no idea what or who me is.

Some things disturb me more than others now. About the illness, I mean. The dissociation is scary and confusing. I tried to get help for that during my therapy but after dragging this issue out from the depths of me, it was then left unaddressed. Yes, the dissociation disturbs me; I don’t like it at all.

The meds have lessened the occurrences of ‘extremely intrusive suicidal ideation’. It’s clipped the top off the highs and the bottom off the lows. I’m more stable. The fact that I’m compliant – both with taking my meds and attending my psychiatrist appointments – shows that I’m in a better place than I was. Not a good place, just a better place.

 

 

 

They shoot horses don’t they?

O yeah, I forgot to mention.. It appears I also have a dissociative (depersonalization) disorder to accompany my bipolar / anxiety / OCD. If I was a horse they’d shoot me.

Psychiatrist: “I can assure you you ARE real.”
Me: “I have a degree in philosophy, would you like to argue that?”

 

 

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.