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 miss the mad me

 

It sounds, I imagine, unbelievable if I were to say that I miss madness. Time is on its side, after all; 55 years until I sought help for what, by then, I knew well enough had to be bipolar disorder. Manic depression. This was three years ago.

I exist now with no medical or psychiatric help; all I have is a small cauldron of medications to keep me sane.

My moods are indeed more stable, with the top and bottom of them clipped. That still leaves an awful lot of space in-between for, well, potential insanity.

Something of me has gone. Maybe it’s me? After all, you live with someone long enough you get to know them, maybe very well – or what you imagine to be so. What’s gone for me is my creativity first and foremost; I am a poet, novelist, photographer, painter. Or at least I was. No, I still am. I just don’t do it as much. I’ve started to write a small amount of poetry again and I’ve always taken photographs. I’ve written no fiction in a few years and as I say, a piddling amount of poetry that I don’t know the value of. Is it any good? Well, it gets published – is that an indication in these days of online magazine and journals? Depends which one I suppose.

Madness gave me a sex life. Rather too much of one I suppose. And with it, some confidence and a way around the crippling social anxiety I have now or when sane. Luckily I escaped the uncontrolled spending that may people with bipolar have. I’ve had no inclination to go out and buy a Harley Davidson or a sports car. I did buy several Fairport Convention albums and a load of cheap watches. I am holding down a good job (I have no idea how) and I can handle this limited expenditure.

After all, in the past, whilst manic, I’ve got married soon after beginning a relationship. And bought a one-way ticket to India (and used it).

I read a lot of blogs and articles about bipolar; I’m pretty much a textbook case, though one of my psychiatrists (when I had some) said I was an ‘unusual case’. This, I assume, is because I have both ultra- ultra rapid cycling (ultradian) bipolar as well as a more typical cycling form that has varied from rapid cycling to a longer cycling model.

Some things are much easier for me now, medicated. I had several months of CBT but it didn’t seem to have worked for me. Maybe if I’d been medicated at the same time it would have helped? Some things surfaced during that therapy that I didn’t like, didn’t feel at all comfortable with. Specifically, bipolar dissociation and even DID itself. One of the more ridiculous things my therapist suggested was that I free the other self inside me (and in the mirror) to see what happens. No, thank you.

I can’t honestly say the ‘extremely intrusive suicidal ideations’ are any less present. Maybe a little less severe though. Maybe not.

You might have by now a sense of what I mean by missing madness? When manic or hypomanic – and especially when in mixed moods – I often have no idea what I’m doing. Sometimes I know afterwards, often not at all. I have memory lapses (dissociation?) that scare me. My short term memory is wrecked. I live a separate life in dreams, though I’ve not slept through the night even once in decades.

I’ve put on a load of weight since starting the meds – I usually sum up the choice of being medicated or not as fat or mad? I seem to have chosen the former, though as I said at the beginning of this piece, I’m far from convinced that I’ve made the right choice.

 

 

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.

 

 

 

 

 

 

 

Starting to rattle

I started going downhill again a month ago. GP tried to get me seen by assessment team the same day but it took a week. Then I had to describe it all again; for what seemed like the hundredth time.

And again, another long assessment. My psychiatrists said something about juggling my medication a little and trying to get me more (1:1) CBT therapy. Last time I had therapy for several months I’d yet to start on the meds and it did very little for me I think. If I get more therapy now it will be interesting to see how it goes alongside medication.

So a couple of days ago I had my follow-up meeting with the psychiatrists; another ‘20 minute’ one that turned into 50 minutes.

The bottom line of which is that my Quetiapine has been increased almost to maximum dose – up from 500mg to 600mg. Fluoxetine remains at 20mg. And Valproate has been added into the mix, at minimum dose: 500mg. Lithium was discussed but I was told the side effects wouldn’t agree with me – and anyway, Valproate is better for OCD (and its anxiety trigger).

I’m starting to rattle.

 

June update

I’m relatively stable at the moment, hence the reason I’ve not written anything here in a while. The sole reason for this stability is my meds. After all, I don’t have any other help or input – in this respect I’m where I was three years ago, before therapy and starting on quetiapine + fluoxetine. I am theoretically in the care of my GP though I never see my GP.

After having so much time off work last year (several months) my main objective this academic year was to have no time off at all. That’s how stubborn I am! But here we are, seven weeks from the end of the school year and I have 100% attendance.

It doesn’t mean I’m “better”. I’m not; there’s no cure for bipolar. No cure for anxiety. No cure for OCD. No cure for the dissociation (DID). There’s just medication; damage limitation.

I still, of course, get intrusive suicidal thoughts. I still don’t sleep well. Surely 550mg quetiapine + 20mg fluoxetine daily should be knocking me out all night? But no, I’ve not slept through the night in decades, if I ever did at all. My short term memory has taken a severe hit (I suspect some of this is memory lapses linked to the DID symptoms) though my long-term memory in many respects would put your average elephant to shame.

Quetiapine continues to function in making me fat. It’s a straight either / or choice with these meds: Fat or Mad. I’ve opted for the former, somewhat reluctantly.

There’s a blog piece to be written about the DID symptoms I’ve experienced through my life and I’ll write than when I’m able to collect those thoughts together.

 

Madness

However much I improve, however much I remain stable, I’m still balancing on the edge of madness. So much so that I feel, even with a smile on my face, that balance could be tilted and into the mire I slip.

There’s no doubt I’m so much better now than I was all my life until the climb began a couple of years ago. While therapy did little except drag up tons of old stuff (childhood issues, physical and psychological abuse) that was then left to fester un-dealt with, the meds – currently 550mg Quetiapine, 20mg fluoxetine – have clipped the ends of my mood swings. There’s been no obvious hypomania for quite a while now, no deep low. My sleep is still almost as bad as ever and decades have passed since I slept right through the night – if indeed I ever did so.

Anxiety is always there to some degree; it’s the main symptom of my ultradian bipolar that hangs around stubbornly poking a long stick at me. The OCD, while a nuisance and often unpleasant, is mild and I can handle it.

I’ve had to live with this my whole life – I don’t just have bipolar, I am it – and as the saying goes, I’ve survived every bad day I’ve ever had. I’m still here.

But I’m still doggedly hanging onto sanity. Those claws could slip any moment making me fall into madness.

I call it (but only to myself) the other one. That other me sharing my body but lurking in the shadows rather than being out here with Me. The one in the mirror sometimes. Dissociation is something else I’ve always had; I can remember it in existence as a child. I’m uncertain whether the other one wants to choose madness. I think we always opt for survival, and bipolar suicidal ideation I believe to be little about actually wanting to die but rather, wanting to be free. To be whole, to be well. Whatever that is.

On the edge of madness, 24/7. Fighting a range of battles, physical and psychic. It’s quite the balancing act. Sanity is winning a struggle against ‘inner demons’ or the other one. Always teetering, always throwing one’s weight in the direction of self.

 

You’ve got to hand it to me..

..I’m working bloody hard to stay on top of my illness.

Teacher with bipolar disorder

I rarely post links to articles in the press, but as a teacher myself this story was important to me. Last year, beginning meds and therapy, I had almost 9 months off work. Since I returned to my teaching job at the end of last July I haven’t had a single day off. This is the result of great effort (and a lot of stubbornness) and I feel proud to have achieved what I have done. I’ve had little or no support from Management, including seldom if ever being asked how I am and if they can help in any way. I’m certain if I had my arm in a sling or a foot in plaster they’d be falling over themselves to assist. But of course you can’t (usually) see bipolar… so evidently – to them – it doesn’t really exist.

http://www.walesonline.co.uk/news/wales-news/teacher-bipolar-disorder-been-awarded-12519829

 

 

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.

 

 

 

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.