Afterthought on a few flies in the ointment

The biggest problem I’ve found is that no-one talks to each other – therapists, GPs, psychs, Primary- and Secondary Care professionals.There’s no ‘joined up thinking’ and loads of bureaucracy. And no targeted support. I’d have patients assigned to specific care providers who can manage their treatment and support. A sort of life coach, nopt necessarily providing treatment but giving support, information and guidance. It would be no different from having a GP or dentist or optician. They might have many patients each, depending on various factors, but at least you’d know who to go to for help. And know that that person has your complete record to hand rather than it being split up and divided between various people who don’t share all the information.

After a year of ‘treatment’ the only advice I’ve ever been given if I am ‘in crisis’ or suicidal is to go to Casualty (uh yeah, I’m trying not to kill myself but I’ll just drive to the hospital and try to find somewhere to park first shall I?) or ring 999. I’m sure an ambulance will be here within the hour or 2.

Peer support seems to be almost totally ignored as an aid. And surely that’s a cheap option too?

One year on and has anything changed?

Well here I am a year after finally getting the nerve to tell my GP about my lifelong bipolar II. Thirty-four years of history when I handed over the letter; I really didn’t think I could convey all that ‘stuff’ verbally.

Some of this past year I’ve blogged here, though there are many gaps.

I’ve been having CBT for the past 6 months+ and my final session was last week. Why has it ended? No idea; that wasn’t discussed. I assume money and caseload.

After seeing the psychiatrist again a few months ago, and being given at that meeting a handwritten note of four meds (which I was to take away and Google, then pick one to start on – something I still find utterly bizarre), I am at the moment back where I started a year ago.

With the final CBT session completed, it means I have now been discharged from Secondary Care back to Primary-. Though in effect all that means is I am having no input, support, guidance or treatment at all.

I have um’ed and ah’d about starting meds for these past few months as I am managing to (just about, at times) hold down a professional job along with being a single parent 50% of the week. Lithium was my first choice from the list, only because it seems to have the least side effects (well, until my thyroid and kidneys implode). The psych’s first choice – Quetiapine – seems to be, online including social media at least, universally criticised. I really have no desire to become Mr Blobby by Christmas.

Regarding Lithium, I also worry about my driving licence being revoked by DVLA. I need to be able to drive, to do my job and to be a parent at the mercy of the School Run.

If I decide to battle through this once more by myself, perhaps with occasional random input from Primary Care services, then what was the point of the past year? I really cannot go on an awful lot longer feeling like this. I’m not as physically- and mentally strong as I used to be. Plus, I’ve driven away everyone I’ve ever loved, or those who have loved me. Apart from my son. I have no-one for support. No-one to talk to when – like today – I am being torn apart at every level by bipolar anxiety which is cooking up a new batch of mixed mood several times a day.

‘You shouldn’t have such a strong work ethic’, the psychiatrist told me. I’ve learnt of course that ‘the system’ isn’t designed for those BP people who are managing to hold down a job. There are no groups, clubs, meetings in the evenings or weekends; outside normal office hours.

I keep being told by healthcare professionals ‘you wouldn’t believe how many doctors, lawyers, teachers etc… are bipolar and taking [meds].’

I’ve asked for another psychiatrist appointment, which will take a month or so to manifest. At this moment in time I intend to begin Quetiapine. I’ve turned down the recommendation/offer of beta blockers for my anxiety as I’m going to investigate first whether it actually is BP-related. If it is and the Q works, then bingo. Buy one get one free.

As I keep saying…. watch this space.

Been a long long..

Last post was ages ago. I was waiting for my Assessment meeting, hoping for diagnosis. Obviously that was overly optimistic, due to me knowing nothing of the system back then.

Things have changed a bit in the past 6 months.

I’m on Week 13 of CBT to address my anxiety (as opposed to my bipolar issues). It’s going ok, but it isn’t helping one iota with the lows, the highs, the suicidal thoughts, the despair. I learnt the general idea of CBT in no time; recognise one’s ‘bad thoughts’ and turn them into ‘good thoughts’. Theory’s great, isn’t it?!

Some other, scary, stuff has surfaced. Physical and psychological abuse going back to childhood, from my mother. Nothing sexual has surfaced.

I come out of some sessions exhausted. Sometimes they trigger hypomanic episodes.

I’ve seen the psychiatrist twice. I almost walked out that first time; she was arrogant, unprofessional (imho), confrontational, unhelpful and with no empathy whatsoever. She told me there was no chance of getting a diagnosis; there were only a few doctors in the Authority assigned to such a thing and thousands waiting for diagnosis already.

She wrote down the names of 4 medications and suggested I go home and Google them to see which one I fancied trying (yes, really). Lithium… hmm, don’t think so. Quetiapine… I think not. At the end of the day I have to get up early and go to work, do that job whilst alert, and more importantly keep that job and not spend months at a time ‘on the sick’ for fear of losing that job. I’m a single parent 50% of the time too.

Same goes for treating my chronic insomnia (I haven’t slept right through the night even once in 20 years); I have to get up at 6.30am for work or the school run. Sleeping tablets aren’t conducive to such social commitments.

So at our 2nd meeting I had to decline the offer of medication for my (undiagnosed) bipolar II. And go with the CBT for now. After all, I’m still alive after a lifetime of this illness. And as the psychiatrist said, I shouldn’t have such a strong work ethic, should I?

I contacted MIND to see what courses and support it could give me. As with the ‘system’, those of us who fight to hold down a job aren’t catered for; the courses happen during office hours, on the whole.

When the CBT ends, which of course it will do, I’ll be dealing with this again with no treatment or support. As if the past year+ of seeking treatment and support has never existed.

Who knows what the answer is? I’m not even certain of the question.

Finally, the day is here

Secondary Care assessment and diagnosis appointment this morning.

25 mins late going in, for their first appointment of the week.. doesn’t bode well. Spent 90 mins with an OT who asked almost all of the questions, and a psych doctor who wrote reams of notes.

Conclusion? Who knows? They like to ask ‘what treatment do you want?’ I tell them: ‘I don’t know, whatever’s best and works. That’s your job! I wouldn’t let you do my job but I wouldn’t expect to do yours either.’

I made a stab at a guess: medication to get me stable then off it as soon as possible and some kind of therapy. He said ‘you’re not far off there’. I was ‘off’ with the ‘coming off drugs asap’ bit it seems…

I pushed for a ‘label’ for diagnosis but they wouldn’t say. Apparently the thing these days is not to use labels as it’s not about a name but a treatment. *yawn

He said: ‘there are a few things going on here.’ They focussed a lot on anxiety as a symptom and a trigger. I hope they don’t do what our Ed Psychs do when they’ve filled their ASD quota and diagnose ‘Anxiety’. I will have to wait to see a consultant now for medication. That won’t be this year..

So again, like the past 8 weeks, I have no help to call on, no treatment. I’m on my own, same as it ever was these past 35 years.

Secondary care assessment & diagnosis

The waiting is almost over.. possibly. Having presented myself to my GP in early July this year and handed over a letter detailing my lifelong (I am in my 50s) undiagnosed and untreated mental illness, my Secondary Care assessment and diagnosis appointment is next Monday.

I haven’t been to work this week, just couldn’t leave the house. Particularly having slept so very little; racing thoughts, agitated, OCD at 2am and every hour thereafter.

If you’ve been following my random posts on this blog you’ll have heard me say that this diagnosis is almost certain to be one of Bipolar II, possibly with some other issues.

Since I was discharged by Primary Care (after a few appointments) 6-8 weeks ago (because Secondary- had taken me on) I have had no support at all but my health continues to decline quite markedly. Hence the reason for my GP visit.

Actually there was advice, of sorts, to tide me over: ‘if in crisis, go to A&E or ring the Samaritans.’

Needless to say, this hasn’t been any comfort to me during these weeks of ups, downs and – more frequently – mixed states. They’re the most dangerous of course, as you’ll probably know.

So, next Monday.

See you on the other side!