Choose your own misadventure

**TW: suicide, including methods**

I’m aware that misadventure isn’t the correct terms here; it means something that happens to befall you. The things that might befall me aren’t happenstance, or bad luck, but what else can I say? Am I choosing my own demise? Not exactly. And I choosing my own life? Definitely not.

Unless you are of a certain age, you probably don’t remember “choose your own adventure” books. It was a simple enough concept. At various points in the narrative, the reader was given choices, and how the story continued from there depended on the choices made. So if you entered the castle, you could choose to open the heavy wooden door in front of you, in which case you would turn to page 61 or whatever. Or you could opt to go up the worn stone staircase, which necessitated turning to page 97.

This week I am constantly aware of choices, of forks in the road.

The hand that, as I described, hovered over the dossette box a couple of days ago. Should I have just taken the lithium? Should I have secreted it? I turned to the page for the option “leave it where it is” but I could easily have flipped to a different page.

Before I left for therapy this morning, I looked at the very long lightening cable I use in the living room and I remembered that it was of course taken away from me in hospital. I had the thought – and I have never had this thought before – that I had a choice as to whether to play with it or not, to see whether it was even feasible to make a usable ligature. I chose not to. Not at this moment.

When I was coming home from seeing the psychologist I got off the Tube at That Station. I felt a pull towards going over the bridge, just to see if the huge bloody fence has really been put up where I think it is, just to check that jumping there really isn’t an option any more. That’s what I did just before I went into hospital, went over that bridge, a bridge I had no business crossing. Near the ticket barriers today I was aware that this was another point at which my fates could diverge. It was very, very difficult.

I left the station.

Outside, I knew I could take a bus, a bus to the next station along, a station where I would be able to stand on the platform edge with no impediment.

I chose not to.

I certainly didn’t make that decision because I “chose life”, because I don’t want this life. I told Tom the other day, in a very small voice, throat constricted because I was crying, “I don’t want to be bipolar anymore.”

The thing about choose your own adventure books is that of course they only have a finite number of endings. Although it doesn’t feel like it at the time, you are being channelled towards one outcome or another.

Whilst it may look like a really positive thing that I’ve chosen not to take the options above, it’s actually more about moving away from the stuff I’m afraid of than towards “choosing life”. As my psychologist said this morning, my “protective factors” are currently the fear of certain outcomes.

There’s the bungled attempt with injury leading to permanent, painful physical harm or organ damage. There’s being picked up by the police because I’m behaving suspiciously, which could lead to be hospitalised somewhere I don’t want or like. Frankly I’m not that keen on going back into hospital full stop, although most roads seem to lead there, but I guess the least bad option would be to be back where I was in the winter. But least bad means they are all bad.

I suppose it’s still in my hands, at least for now.

The alternative is to put up with what I’ve got. Also bad.

A finite number of endings.

 

 

 

 

 

 

Posted in Bipolar, Crisis care, Mental health, Mood disorder, Psychiatry, Suicide, Uncategorized | Tagged , , , , , , , , , , | 1 Comment

Cracked

**TW: suicide, including methods**

“How are you doing?” people have been asking. My husband. My friends. My parents. My therapist. The Home Treatment Team nurses.

“Good!” I’ve been replying. “I’m doing well. I feel much better than I have done in a long time. I feel more like… me.” And I meant every word.

I was exercising, and feeling good about it. I was whipping through books, something I haven’t been able to do for maybe a year, if not longer. I was even thinking about trying to come off benefits and get back into work, although as Tom pointed out trying to do that whilst still under HTT might have been running just a bit before I could walk.

I did keep adding a caveat, however. I felt that I was doing well only as long as I kept to a very strict routine, involving regular bedtimes, plenty of sleep, getting out of the house every day, taking at least half an hour of exercise  – could be walking or an exercise DVD or whatever – plus some yoga.

(The funny thing about all this is that when my diagnosis was first changed back to bipolar I read a lot of self-help books on the topic and they all stressed the importance of routine. I was unimpressed. It sounded very boring. I did not ever want to be like that.)

I was, I explained, like an egg. I looked smooth, together, strong, like things could bounce off me. And that was true, but only up until the forces were great enough, and then I would be proven quite fragile after all. I would crack.

Normally I like to be right; on this occasion, not so much. I was discharged from HTT (again) on Thursday – four days ago – with many big smiles, many expressions of pride in my progress, many genuinely fond wishes for the future (again). And I felt fine, really I did. As long as my shell stayed intact.

But that evening we went to a comedy gig with a friend. It was a great idea of Tom’s. I laughed until my lungs hurt. I couldn’t remember the last time I’d laughed so much (the material greatly bolstered by Brexit – there had even been time to squeeze Boris’ appointment to the Cabinet into the mix). It made me feel good. Only we got back late. I wasn’t asleep until after 1am, so that was the first rule broken.

The idea had been that my friend would come and stay for a couple of days before the gig, but it had been difficult for her to get away from work, so the only time we really had together was Friday and as Tom was working from home we decided we’d better go out. By then I was already feeling physically and mentally under par but went out anyway and I did have fun shopping. But as I was doing it I knew that what I should have been doing was resting up.

On Saturday we kept a longstanding arrangement to have lunch at the house of Tom’s old friend and her husband. I hadn’t met them before and I was very anxious leading up to the date, although Tom had briefed her on my bipolar, which was helpful. Lunch was very nice, out in an amazing garden that leads down to a little river with that lovely river smell, lots of ducks, and people on little boats. But I found it a very draining to be with strangers for over five hours.

On Sunday I didn’t do any of the things I meant to do that would have been good for my mental health. I did not go to Quaker Meeting. I skipped yoga class. I felt that I had had a precipitous drop in mood and I did not think that Tom understood how serious it was because it had been so few days since I’d been doing well.

Yesterday I met with my Community Mental Health Team consultant Dr X and a CMHT senior Social Worker to talk about whether a care co-ordinator or community psychiatric nurse could help me stop bouncing back and forth between Dr X and HTT. Quite why this was even a question I’m not sure, since as far as I know the ward, CMHT and HTT consultants have all agreed this would be a good idea and the HTT nurses have repeatedly been told that allocation of a worker was imminent.

I explained that my shell had cracked. That I was on a downward slope and simply couldn’t face going through yet another round of rapid cycling and/or deep depression, another round of HTT and maybe hospital, that I felt I needed to take drastic action pre-emptively to step in and stop that.

They looked alarmed. Dr X asked if I had any immediate plans. I said no, because I needed to either obtain more means or do some reconnaissance (That Station is now a no-go for jumpers as they have put up a huge fence). I could see that Dr X was just itching to suggest I start on another antipsychotic, but if you get a chance to read my last post you’ll why I didn’t want that – or not at present.

They were clearly anxious, so I left with the plan that I would go to therapy tomorrow, and that as the therapist is part of the CMHT she will alert colleagues if she thinks I am at imminent risk. Part of me is really pissed off that with only 12/24 sessions left we will have to waste another of them exploring my active suicidality, but there it is. Thursday or Friday someone will call me the plan re: CC/CPN but if I am in difficulties in between I should email Dr X or ring the duty worker. In the interim I am using PRN diazepam again.

On the way home, I thought, Oh. I am actually in a lot of difficulties already. I was sliding into “the sneakies“, the zone whereby I don’t lie to people directly, but I lie by omission, making plans, taking steps. I could feel myself ebbing away from Tom, ebbing away from services, retreating into myself and my planning. The obvious things to do to progress my plans were to stop taking my lithium and stockpile it, then… go for it; check out one or two other stations along the line through which the fast trains also pass; check out which buildings might be tall enough to serve my purpose.

And then I remembered the loneliness of that position. That it was the loneliness in the end, more than the fear of death, that has always made me tell. When you can’t tell your husband or your care team or your real life friends, and you can’t tell you Twitter friends because you don’t want to put them in the position of feeling they have to seek help on your behalf, well then you are all alone. Out on a limb. On your own.

Last night, I vacillated and vacillated over whether to take my lithium. In the end I didn’t take it, but I didn’t hide it, either. I just… left it in the box. Kept my options open, knowing that I only need save them for a week and half more then let Tom pick up the new boxes, and then I would have enough.

We were in bed and I realised I had reached a fork in the road. I could speak up, or I could shut up. It’s not true I suppose but I felt like shutting up was a commitment, that there would be no going back. But I also I knew that shutting up could likely lead to hospital again. Maybe police involvement.

Any every time I pull that shit I worry that Tom will leave me.

In the end I skirted around the topic, saying that I had been struggling with some really terrible thoughts. He instantly asked if I’d been taking my lithium. Yup, until tonight. And tonight? Mmm… No. Had I hidden it? No, just… not taken it. OK, go and get it. I’ll go and hide all the other drugs.

Now I want to see you take it.

So I ate the bread at 11.30pm and I ate the cheese and I washed the three chalky pills down with fizzy water.

This morning there is a strip of cardboard dossette box on the table – two days’ worth of pregabilin, lithium and lamotrigine. There are three diazepam. That’s it. It’s humiliating. I’d only just won back enough trust to have the whole box again.

This morning after Tom kissed me goodbye as he left for work I lay in bed with my phone, Googling fatal falls from multi-storey car parks.

 

Posted in Bipolar, Crisis care, Depression, exercise, Hospital, Inpatient care, Medication, Mental health services, Mood disorder, NHS services, Psychiatry, Rapid cycling, Self-management, Social media, Suicidal thought, Suicide, Therapy, Treatment planning, Uncategorized | Tagged , , , , , , , , , , , , , , | 2 Comments

Look Mum, no antipsychotics!

On (re)diagnosis in 2011 I was recommended quetiapine, but also asked to consider lamotrigene. I was given the chance to go away and read the leaflets and come back the following week, but I wanted to get started. Also my considerable experience of Patient Information Leaflets suggested that most drugs have crappy side effects and that as a patient it is almost impossible to tell which would drug would be crappiest for you as an individual. So I just went with the first line suggestion.

I hope that makes it clear than at no point have I ever felt that at my psychiatrist and I made a bad decision. Lamotrigine has turned out to be a really good drug for me, but there was no way of knowing that and choosing it over quetiapine at the time. As with so much mental health prescribing, it was pretty much a matter of guesswork.

Since then, if I am counting right, I have mentioned quetiapine in 44 blog posts, which probably says something about its impact on my life. In February this year while I was in hospital it was decided that I would come of quetiapine and change to aripiprazole, a decision I haven’t really much written about before.

Quetiapine is a new generation/atypical antipsychotic, often better known by its initial brand name Seroquel, although it went “generic” (the patent expired so any company could produce it) in 2012. This means that NHS pharmacies can shop around for the best price and will purchase whichever brand is most cost-effective. Brands I’ve taken include Accord, Atralak, Quettor and probably others that I have forgotten.

Aripipazole, best known as Ability, is another atypical antipsychotic but is not thought to cause many of the side effects which make other antipsychotics intolerable to some people.

The experiential bit

The most obvious and immediate side effect of quetiapine was sedation. I had hoped that quetiapine would be a quick fix, that if I took if for maybe a month or two my symptoms would subside and I could return to work. It didn’t take long for me to realise that the sedation was as disabling as the symptoms. Sleep had become my number one preoccupation and I felt I had little quality of life. Over time, I adjusted. I felt less sedated at 700mg that I had at 300mg but a level of sedation remained and I continued to sleep for about nine and a half hours every night.

About three hours after taking it, it was if a shutter came down. Tom could see it in my face. It didn’t matter what I was doing, reading, watching, I had to go to sleep. If we were out, we had to get home, quick. Once in bed I would fall instantly asleep. Getting up was always a struggle; in fact waking up at all was hard. My conscious mind would want to wake, but the drug would prevent it. It was like trying to swim to the surface, only to find my ankle was grasped by an octopus.

Early starts were really hard. People I have worked with have seen how out of it I looked at the start of a meeting or training session, how I only really became lively mid morning. Working two days in a row required taking the quetiapine at so early that I barely had time to eat dinner before heading off to bed again.

The other really, really difficult issue was weight gain. I was warned of the potential for this when it was first prescribed, but I just thought, “Oh, that won’t happen to me, because I’ll control my eating and work out more.” Except when you do nothing but lie on the sofa all day because you are so sedated, you really can’t exercise. Except quetiapine disrupts your appetite and the feedback loop that tells you when you are full, so you are always hungry and rarely feel satisfied. Except quetiapine disrupts your metabolism so that you gain and retain more fat that usual.

So over time I gained about 3st – which is nothing compared to many people I know, but has still seriously affected my body image and self-confidence. I tried to lose it, but strict dieting for a couple of months plus tons of exercise produced precisely no weight loss and I became discouraged. I also developed the characteristic pot belly that has lead to numerous embarrassing conversation about when my baby is due and whether I would like a seat on the tube. I found these really humiliating.

Quetiapine also slowed down my bowel function. Don’t worry, I won’t go into too much detail, but the problems became really quite serious despite daily doses of laxatives, and I had to be referred to a gastroenterologist.

Other, weirder, side effects included a stuffy nose soon after swallowing the pill, which caused me to snore, something I also found very embarrassing. And it caused me to have occasional engorged and leaky boobs, something it’s not “supposed” to do as it’s not one of the new generation antipsychotics which like, say, risperidone elevates the body’s level prolactin, the hormone responsible for the production of breastmilk.

Was it ever helpful? At times. The sleep bit was often useful – although when I was really high I would break through even 700mg. When I was having mild psychotic symptoms  an increase really helped down the frightening experiences I was having.

But overall I had had enough. When I was given the chance to switch to another antipsychotic, I jumped at the chance, although initially I baulked at aripiprazole as I had heard bad reports of agitation and insomnia. Looking at the comparison chart of antipsychotics however it was clear that almost all the other options either caused weight gain that was actually worse than quetiapine, or elevated prolactin levels. So I decided to give it a go.

It was an unmitigated disaster. During my slow reduction of quetiapine (100mg/week) I’d been quite wobbly, and ended up under Home Treatment Team. But the last couple of weeks of the quetiapine, when the aripirazole was being added in, I was starting to feel OK. Then I dropped the last 100mg of quetiapine and a kind of aripiprazole hell broke loose. I was barely sleeping. I was so anxious and agitated I didn’t know what to do with myself. I am an anxious person who takes anti-anxiety meds, but on a scale of 1-10, this was about a 12. I have never known anything like it.

It didn’t take me long to be desperate, exhausted, suicidal. I ended back under Home Treatment, who encouraged me to go into hospital. I said I would stay in the community as long as I had an urgent medical review. I needed someone to tell me that either I should hang on in there because the beneficial effects would soon be kicking in or that I should stop the drug there and then. If I did have to carry on, then I would have to go into hospital, because I couldn’t cope at all in the community.

I saw Dr HTT who said that what I was experiencing was clearly iatrogenic (medically  induced) and clearly intolerable, so I should just stop taking it. My God, I was relieved. I waited then to hear what his suggestion would be about the next antipsychotic to try but he suggested… nothing. No new drug. Just to see how I was on lithium, lamotrigine and pregabilin.

I was stunned.

What… no antipsychotic? At all?

I was so habituated to the idea of taking an antipsychotic every day that I didn’t know how to feel. The idea was scary, but it was also liberating. He knows me well, and knows that I have been frustrated at being on so many different drugs; he saw the moment as a chance to address that.

So here I am on no antipsychotics. How do I feel? Well, firstly, and most importantly, I would best describe my current state not in terms of up and down, but in terms of having clarity. I didn’t think the quetiapine was sedating me anymore but now I realise it must have been because to borrow a cliched analogy, it’s like putting on glasses for the first time.

My digestive function is better – no more laxatives. I am eating less, noticing when I am feeling full, feeling truly hungry. I haven’t really worked on losing weight but I’ve dropped a little anyway and I look a little less pregnant. I can breathe at night, so I don’t snore.

I had some really problematic insomnia going on for a while when the aripirazole was still in my system and the quetipaine wasn’t, but that’s settled. I’ve had to relearn how to just go to sleep though. Without the shutter coming down I’ve had to teach myself to drift gradually off, something that made me really anxious a couple of weeks ago but is feeling more natural each night.

I’ve still got lots of problems. I keep trying out work tasks and finding that I am either too delicate/emotional/anxious or that my brain simply won’t work (blogging is nowhere near the level of cognitive function required to write professionally). I told my therapist the other day that I feel like an egg – I may look smooth and strong and solid but actually I’m really, really fragile. But in terms of how I feel off antipsychotics compared to being on them, there is not contest.

I’m not knocking them. I know they help a lot of people. And I most certainly am not ruling out taking them again at some point in the future. But at the moment I am excited to be riding with no hands.

Posted in anxiety, Bipolar, Crisis care, Medication, Mental health, Mental health services, Mood disorder, NHS services, Psychiatry, Recovery, Side effects, Treatment planning, Uncategorized | Tagged , , , , , , , , , , , , , | 18 Comments

The green zone: how “recovered” do I want to be?

I’ve been reflecting on and discussing the concept of recovery a lot lately. I meant to write quite a political post about the recovery model, about which I’ve been openly critical both on here and on social media, about how I dislike the fact that the system imposes a notion of being improved or “fixed” according to its own criteria.

But then yesterday a Home Treatment Team nurse asked me what I wanted my life to be like and suddenly I felt like I didn’t really care a damn about the term recovery, that there was no point at which I could ever say I was “recovered”. After all, don’t we all “recover” on an almost constant basis? Recover from a crisis, a panic attack, a wave of anxiety, a few bad days, a few bad months, a bout of insomnia, an unexpected trigger, side effects of medication, a period of hospitalisation?

It comes and goes in waves. There is no fixed point.

But wants and desires. That’s a different matter. What do I want?

And having thought about this more I have made you a handy infographic, which you probably can’t even see because I’ve drawn it in my lovely coloured pencils.

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The outside lines represent my highest functioning zone, the blue zone, the eight (eight!) miraculous years when I was largely, although now with the benefit of hindsight I see not totally, symptom free.

During that time I had such strength. I was brave. I dragged myself out of an economically and emotionally abusive relationship (not my kids’ dad) and out of the poverty and debt their actions and inactions had created.  I paid off all the creditors. I dipped my toe into the world of dating for the first time and met Tom after a number of hilariously awful encounters.

I applied to become a trainee probation officer and was offered places in two regions. I qualified top of my group with a first class degree and was first in a specialist probation officer role and then a middle manager in short spaces of time. I loved living in London and had a great time. I sang in three choirs every week and took my kids to music school every Saturday morning and I socialised a lot. Critically, I didn’t just go out for drinks and meals and going on holiday, I was able to take the initiate and plan them, and then keep to the plans.

As I have said before, I was so well then that I totally stopped thinking of myself as someone with a mental health problem. I often uncomfortably wondered why I’d decided the kids were best off with their dad during the week when there was no need for it – because I was functioning so well.

I have no hope or expectation of ever my life pushing back to those wide blue parameters.

Take another look at the zones. In the middle – red – is complete non-functionality. This is me sitting on the floor of a psych ward, crying. This is me sobbing to Home Treatment Team that I am being monitored through the light fitting. This is me coldly and calculatingly collecting everything I need for a serious overdose and hiding it in plain view in a suitcase in our bedroom. This is me, down by the tracks.

Clearly, in that level of crisis, I cannot work. 2.5 days has been the extent of my employment for the whole2016 so far and that was in January. I’m self-employed for flexibility, but that doesn’t help if I can’t get to the meetings or the phone conferences or the training events or the research interviews. Even the from home stuff becomes impossible; when very unwell I can neither read (at all) nor write professionally so document reviews and freelance articles are a no-go.

 

Between about July and the end of November last year I was in the orange zone. It wasn’t brilliant, I wasn’t “well”, but I managed to keep out of crisis care. Work built up a little bit and I was involved in interviews for one active research study and preparation for a brand new one with a different team. I had service user input on a series of other research proposals. I had a couple of well-received articles on the BBC Ouch! website and The Lancet Psychiatry and a brief TV interview. I went to some big health-related events on behalf of the Coalition for Collaborative Care.

I wasn’t earning big bucks and as a freelancer in the field I don’t expect I ever will, but hey, I was earning something. I was even able to contribute to the household in some way while meeting my own needs. Everything I did was interesting, everything felt like I was making a difference. I was reasonably happy. I was ticking along. TBH simply getting back there would feel like a miracle right now.

But what do I want? I suppose I want a greater level of security than that. I don’t know if I would ever actually do this, but sometimes I see half time service user researcher jobs advertised and I hanker, oh boy do I hanker, after them. I say I don’t know because although research is one thing I love, I love all he other things I do, and I love the flexibility. But the point is this: i would like to be able to apply for a job if I wanted to. I would like to be able to say, absolutely, I can be at work Mondays, Wednesdays and Fridays, or every day between two and five.

In truth, I would probably prefer to grow the business instead. Either way, I would like to be able to work three days instead of one. I would like to be able to commit to attending an event without having to add the caveats, “I hope” and/or, “if I’m well enough.” As previously stated, I want to be able to go back to choir and to yoga and to be able to fund those things myself. I want to be able to at the very least chip into the household finances.

I supposed what means is that for me, “recovery” – the green zone – means having choices. It means a reasonable level of wellness, albeit one for which I expect to have to continue to have to take meds, maybe continue in counselling (my NHS therapy will have long run out), be vigilant and monitor my own feelings and behaviour to try to stay as well as possible. “Self-maintaining” is how a participant described it in one research study I took part in.

This might mean services gently bowing out. I know it’s silly to to say that when I’ve only just got a CPN coming into the picture, but I don’t want to have to have one forever. I don’t mind periodic monitoring visits to my consultant although part of my dream does remain being discharged from secondary care.

But choices, choices, I want some choices about what care I receive, what work I do, what I do outside of my work life. And these are choices which those of us within the mental health community sometimes forget that blue zone people get to take for granted. I’d certainly forgotten about them. Don’t like your job? Get another one, go back to your old career, brush up your CV and off you go. Bored with your social activities? Just give something new a try, go somewhere you’ve never been, meet new friends.

I don’t know if/when/how I can get to the green zone. For now I’ve got to concentrate on consolidating my moves back into the orange zone, sorting out the troublesome insomnia, checking out what life is like without an antipsychotic, edging towards paid work (I have a couple of unpaid bits as practice but I’m still on sick leave). So no running before I can walk. But one day I hope to run off into the wide green horizon. I hope that can be a reality.

 

 

 

 

 

 

Posted in Bipolar, Crisis care, Employment and benefits, Medication, Mental health, mental health debate, Mental health services, Mood disorder, NHS services, Recovery, Self-management, Uncategorized | Tagged , , , , , , | 6 Comments

The naked brain

Ever wanted to run off to a cave and hide for a couple of weeks?

Today it was agreed that after everything I described in my last post, my symptoms are “clearly iatrogenic” (medically induced) and “clearly intolerable” and that the aripiprozole should…. stop.

I actually cried at this news, I was so relieved.

I was waiting though for the HTT consultant to suggest an alternative antipsychotic to replace to with but – he didn’t. He didn’t recommend any other drug. I was amazed. I had been expecting to be asked to discuss lurisadone, to have to fend off the prolactin enhancers and the weight increasing antipsychotics, because I was so in the mindset that I would just have to take something else. I wasn’t prepared for him to be content to strip back one layer and just see what happens.

I told the doctors, plural because the two lovely juniors were also with us, that sometimes I wonder about the point of meds at all – for me, that is, I would never comment on others’ experiences.

I don’t believe any of the drugs I tried when I was younger, other than short term crisis meds, really helped me. None “managed” my bipolar. From my teens until my late 20s my episodes came and went like tides. I’d have a year “off”, maybe 18 months if really lucky, before the tide swept in and I’d have a period of high and a period of low, the whole thing lasting about six months and then it would just…go.

During the exquisitely painful episode after my daughter’s birth, which went on forever in my mind but on paper probably lasted the expected six months, I never really responded to the sertraline or the paroxitine or the trazadone or the secondary care referral. I think I just came out of it, because my bipolar moves on its own mysterious ways, and it was time.

In the next, extremely serious, episode venlafaxine made me mood switch from depression to the closest I have ever been to true maina with hilarious, oops I mean disastrous consequences. I came out of it after an overdose that resulted from the crash. You could say it was going back onto the venlefaxine that controlled things afterwards, but it wasn’t. If it had “managed” my BP in any way I wouldn’t have spent three days hooked up to an infusion pump trying to prevent my liver being permanently damaged.

I went into remission anyway, and I stayed there for years. I don’t know why. I do understand the work stresses and strains that eventually destabilised me in 2011, but they were nothing compared to the strains of divorce, poverty and debt I survived while  remaining well years earlier. Mysterious ways indeed.

l confessed today that I feel I keep crossing drugs off a list – not just all antidepressants, as I am now advised to steer clear of them due to the risk of mania – but now sodium valproate, quetiapine, possibly lamotrigine, definitely lithium, although most doctors seem very keen for me to stay on it… a list of drugs that will/can not give me symptom control. That I increasingly feel that there is no drug that can do that for me. That my bipolar will only do its own thing.

There have been so many times when I have felt that I would be so much worse off without my meds, maybe even dead, and I have bristled at the #pillshaming by those who are anti-medication. Yet, at the same time, I have sometimes fantasised that one day I might run off to a cave (a nice cave, obviously, not all dank and horrid) and just… not take any meds with me. I know I might be ill for a while. But it’s a fantasy of being able to strip back to being me, and unmedicated me, something I haven’t seen since 1999. I am curious to find out what it is left. To see my brain, naked. Perhaps in all its mess and distress and periodic episodes.

But I’m in a mess and in distress now with one long continuous desperate five year episode. Surely I couldn’t be much more ill than I have been on the meds. My life is going the wrong way, primary care to secondary care, to crisis care, to hospital, no matter how many drugs I take.

Interestingly, Dr HTT was not entirely horrified by this idea. He remembered that I don’t feel I find lithium effective in any way, good or bad, and suggested that eventually maybe I could strip back to just one drug for the BP (in a sense the pregablin is different because it specifically targets anxiety, not mood stability, so I don’t know if that counts).

An interesting thought. It’s not one I’m sure my own consultant will warm to, but maybe there’s eventually a way through to at least reducing the burden on my poor liver. I still entuertain thoughts of going further than that, of stripping back further to the naked brain.

Yet I suspect as soon as the first suicidal crisis hits I’d probably come out of that cave, on my knees in the sand, begging for the drugs.

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Posted in Bipolar, Crisis care, Medication, Mental health, Mental health services, Mood disorder, Pillshaming, Psychiatry, Recovery, Side effects, Uncategorized | Tagged , , , , , , , , , , , , , , , , , , , | 9 Comments

Not back on track

***TRIGGER WARNING SUICIDE***

Uh-oh.

My rate of blogging is always a sign I could be unwell and here we are, two in two days.

I mentioned medication change and aripiprazole (brand name Abilify) almost in passing yesterday. Truth is, I was using blogging as a distraction because of the mental agitation I was experiencing. I couldn’t settle to anything, so I thought I would pour some of my mind out onto “paper”.

For years I swore I would never take aripiprazole. I had heard too many stories of mental agitation, physical agitation, inability to keep still, restless legs, insomnia. Even at my first ward round in hospital, when options were being put on the table, I said, “No. I’m not taking aripiprazole. No, no, no, no. no.”

But when I sat with the ward pharmacist and looked through all the side effects of all the other atypical antipsychotics, it looked… the least awful. In terms of weight gain. In terms of prolactin levels (which can affect breast size and cause breast milk production). In terms of extrapyramidal effects (involuntary movements and muscles spasms). So I decided I would give it a go after all and try to have an open mind and an open heart.

While I was cross-titrating (going down on the quetiapine and up on the aripiprazole at the same time) I found myself very sedated. Annoyingly, doctors kept saying that I “shouldn’t” be sedated as it is an “alerting” rather than a sedating drug, but there it was, and in the end it was thought that it was an artefact of the combined drugs. This proved to be right; in fact now that I’m off the quetiapine entirely my problems have really begun and they are all about being “alerted”.

Don’t get me wrong, I was glad to see the back of the quetiapine. So, so glad. Five years of – on and off, and not all at the same time – sedation, hypersomnia, brain fog, increased appetite and carb cravings, really significant weight gain leading to high blood pressure, a bowel disorder from the drug slowing my metabolism down, a stuffy nose, hair falling out more quickly all over the house, breast engorgement and milk production, and a possible link to breast cysts… it’s definitely the drug I’ve taken with the most side effects and overall the benefits have not warranted the costs.

I’m still on lithium and lamotrigine and pregabilin but TBH they feel a bit like background drugs right now. It was all about the quetiapine, now it’s all about the aripiprazole. As the Q dose has dwindled, the aripiprazole side effects have increased and since the last bit of Q went, things have got a bit out of control.

Agitation (mental, rather than physical), anxiety, insomnia… these are all on the patient information leaflet, but until you experience them, and all at once, you don’t really appreciate what you have let yourself in for. In other words, I was right all along and I can’t live like this.

The insomnia’s been the worst; despite taking the drug in the morning for at least a week now I’ve been having a combination of difficulty sleeping in the first place, a hour or two (separately) awake in the wee small hours, and waking much earlier than I would normally. I’m probably getting 5-6 hours, and I am a person who needs 8 hours, minimum, and not horribly fractured.

I’ve started having visuals when I close my eyes, psychedelic patterns and pictures than change and morph maybe twice a second, making it harder for me to sleep. I haven’t really had much of these since I wasn’t sleeping when I was taking sodium valproate back in 2011 so I assume in both that played a part. Faces; animals; fly’s eye views; rows of regular shapes, like colourised picture of things seen though a powerful microscope. It makes it rather more difficult to get to sleep.

The tiredness is horrendous. I can’t think. I just want to cry. I try not to nap more than half an hour in case it makes the night harder, but I’ve no idea if that has any effect or not. The anxiety and agitation increase because I am so tired I can’t do anything. I can’t settle. I can’t concentrate. Yesterday and the day before, I just hated being alive.

I’ve tried diazepam for sleep. I’ve tried promethazine (a sedating antihistamine). I’ve seen the GP today and got some zopiclone, a drug I don’t like, but I am desperate. The nights are the worst, when Tom is asleep and I am very much not. I am starting to think about suicide. I am starting to feel that I cannot be expected to live with these effects, and that if I have to, I need to be in hospital.

Last night my mind went back and back to those tracks. I wanted to go back there. I wanted to creep out while Tom was asleep – maybe locking him in – and go down there and wait for the next train. Or part of me did; part of me wanted to go to A&E on the bus, or walk there if there were no buses, and ask them to let me stay there, so I couldn’t go jumping, until Home Treatment Team came online at 8am and I could ask them to find me a bed.

Why didn’t I wake Tom? I really don’t know.

After crying to the GP today we both concluded I need more secondary care input. I don’t have an appointment with my psychiatrist and I haven’t yet been allocated a CPN (Community Psychiatric Nurse) as promised. I need someone to say that in their experience this will all pass in… however long. Or that if it hasn’t now, it won’t. Whatever. I can’t make an informed decision without information. Although as a doctor friend said to me on Twitter today, only I can really say when enough is enough. And I don’t want to be back on the tracks.

In short, I feel like the new drug that’s supposed to help me is pushing me into crisis. Suicidal crisis. I have emailed my psychiatrist telling him this. If it weren’t for Tom encouraging me to give it the fair trial I asked him to support me in giving the aripiprazole, I think I would’ve just stopped taking it. I still think I might.

Posted in anxiety, Bipolar, Crisis care, GP, hallucinations, Hospital, Medication, Mental health, Mental health services, Mood disorder, NHS services, Primary care, Psychiatry, Side effects, Suicidal thought | Tagged , , , , , , , , , , , | 10 Comments

Unpinned

It is not always a bad thing to be pinned down. Rather like a tent, I need underpinnings in order to be who I want to be, to feel like me. I can’t erect the life I want unless some fundamentals are pinned down.

I don’t feel like me at the minute because most of them aren’t in place. Obviously my relationship with Tom is absolutely critical, but I’m talking about the social things, the things I do in the world outside the home, the things with a regular rhythm. They are things that improve my self-worth, find me friends and keep me mentally, physically or even spiritually fit.

There are, for me, four key pins, all missing.

I can’t go to yoga. I just can’t. I have enough money to go maybe once a week, but I daren’t. I’ve become scared of getting there, scared that I’ll bottle it last minute and have to pay the cancellation fee, scared of… I don’t even known what. There is nothing to be scared of. I used to go to the studio 4 or even 5 or 6 times a week. I have developed a kind of mental block about it now which has now spread to home practice.

Part of it is that I am so bloody tired. From being very sedating in combination with the quetiapine the aripiprazole is now messing with my sleep badly, even though I take it first thing in the morning. But it’s not just that, I have this block to doing even a tiny practice, even ten minute, even five minutes. I can’t/don’t/won’t. I can’t make myself get to the studio so home practice is the obvious thing, but even with online courses or DVDs it just isn’t the same as the studio. I don’t enjoy it as much, there’s no social aspect, and it doesn’t – obviously – get me out of the house. It just doesn’t cut it.

So there’s that. Another pin that has traditionally helped me manage is singing, but it must be over a year now since I sang with my choral society. The problem is this: I have a good voice, but my musicianship, and therefore my sight reading, are crap. If I miss the first three rehearsals of term, and this has happened a lot as I have lurched from crisis to crisis, I am doomed because I am just not competent enough to jump on in to whatever we are rehearsing. Every term I live in hope; there won’t be another chance now until September, although I guess that’s not so very far away.

I’ve mentioned a couple of times that I’m a Quaker and really I have tried but there’s no easy way to explain what that means, let alone in a quick blog-friendly version, so if you’re interested do give it a Google. But basically I meet with other Quakers for an hour on Sunday and mostly sit silently together. Yes, I know that’s strange. Anyway, this has been something I have done almost every Sunday for around five years – but I believe I have been just once this year.

Everyone knows about my condition. Everyone is welcoming, friendly, concerned, supportive. So it’s not that. The silence bit is more problematic. Silence is scary and possibly dangerous when you have suicidal thoughts, and an echo chamber for your own brilliant ideas when you are hypomanic, which is not conducive to sitting quietly. Whatever the cause, my feelings about Quaker Meeting have been a bit like yoga: I just can’t. Luckily I have friends who are helping me with suggestions as to easing myself back in because I can’t remain an outsider.

Then there’s work. In a sense I “just can’t” do that either, but it’s a different kind of can’t. There’s no mental block – I’m keen to get back to it – but I don’t have the capacity. Writing this is like pulling teeth. Writing for publication, to a deadline, to a word count is just impossible. I am preparing for a conference (unpaid) but doing the slides was tortuous. My concentration span is gnat-like so I had to do it in dribs and drabs. I can’t read books, and again this jars with my sense of who I thought I was.

Some of this is of course down to the slow healing from the dreadful mental state I’ve been in, but then there’s been sedation and brain fog and horrendous anxiety and agitation, and now insomnia and plain old exhaustion, all from the medication change. At times I have wondered if the treatment is worse than the malady, but actually my mood seems pretty stable so overall I think not.

With all this going on I have been signed off for another month which, although necessary, is depressing. I want to be back in harness. I miss meetings. I miss running training and workshops. I miss interviewing people for research studies. I miss my various colleagues from my various projects and I loathe feeling out of the loop.

I also loathe being on benefits, not because I think there’s anything wrong with that at all, but because I was just beginning to earn a little bit of money and that was very good indeed for my self-esteem. I’ve never, of course, got anywhere near the level of financial contribution I used to make in my long period of remission. But I liked being able to say, “Oh, I’ll take care of that [bill]” even if it wasn’t that often.

Much as I have qualms about talk of “self-esteem” in mental health – especially around work, where it can get quite politicised and dangerous for disabled people – this is my problem right now. Not having my tent pegs hammered in reduces my self-esteem, and reduced self-esteem makes me more prone to apathy and anxiety.

Maybe some apathy and anxiety are understandable while I try and weather this med change. Maybe I’ve become my own worst enemy. I don’t know. I’m very confused about it all, about how to access the things I need and get past the blocks I seem to have created for myself out of my own anxiety.

I think I need little goals. Sit in Quaker Meeting for ten minutes of silence instead of 60, just once or twice during June. Go to one work meeting this month (if I can get the DWP to agree that this is “permitted work” and I won’t be penalised for it – they seem confused by this and have to pass it on to a “decision-maker”. I don’t know why, but this keeps reminding me of “gamemakers” from The Hunger GamesThe Decision Games). Speak at one workshop. Go to two yoga classes by the beginning of July. Practice for ten minutes twice a week.

It’s hard not to judge myself harshly. My tiny goals are a far cry from even the two days’ work a week I was managing, let alone the mammoth number of yoga classes and the regular sitting in silence.

I’m judging myself harshly now, comparing my writing to my usual posts as I fear I am rambling on and on and my ability to proof read is minimal, but that’s how I feel, rambly, flapping about in the wind.

 

 

 

 

 

 

Posted in anxiety, Bipolar, Books and reading, Crisis care, Employment and benefits, exercise, Hypomania, Mental health, Mood disorder, Recovery, Self-management, Side effects, Uncategorized | Tagged , , , , , , , , , , , , , , , , | 6 Comments