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.

 

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.

 

 

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..

 

 

 

Weight one moment

I take three different meds to control my bipolar disorder and they all cause significant weight gain. I’ve had to make a decision whether to spend my life ‘fat or mad’, with the only realistic option being ‘fat’. I’ve put on over two stones in a couple of years.

As  if I didn’t have enough problems already.

 

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.

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 – ‘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.