An Interview with B.P.

I spent some time talking to B.P., who shared her experiences with me – of care in the 70s, in the USA and how things have changed for her as time has gone on.

How long since you were diagnosed? Given that you’re older I assume you’ve been living with mental illness for a while?

He changed it. It used to be schizophrenia, then he changed it to schizoaffective about three years ago. I have been seeing him for many years. I’m 61, it hit when I was 18. Originally I was diagnosed with bipolar 2.

Did you seek help when you were 18?

Yes, and they gave me drugs, heavy duty, and said “see you in 6 months”. I didn’t take them. I had hyper-sexuality as well, so my 20s were wild. No one explained anything to be, so I had no clue, I just lived.

It sounds like there wasn’t much support. All the studies say early intervention is key, do you think that would’ve made a difference?

Yes. Yes I was alone, nobody, just a kid who didn’t know anything. Today I see so much help for these things; they help us to understand better. It was common in the 70s for people not to talk about mental illness. I see it at groups where they are closer to my age. At the age of 18 I went to a psychotherapist who never told me anything. I went because it was a person who I could be with, as I was all alone.

Have you ever been an in-patient?

Yes, once for 10 days in 2001, and another time just overnight. In 2001 I was highly manic, very high.

Did it make any beneficial difference to your condition?

I felt it made me worse, they take you off the drugs you are on and put you on more, and you come out so messed up. Then the regular doctor has to get you straight again. I hate going inpatient. I didn’t like it at all but I love my peers there.

We talked a bit before about peers and support groups, can I assume you’d recommend that option?

Yes, all those years I said I’ll never go to groups – oh my gosh, I had no idea what I was missing. But perhaps where I go is just a good place.

How about your family? Supportive, or didn’t want to know?

Our family is not close, so I’ve been alone. I married when I was 18 for a short time, a very strange time in my life. And then in the 90s I was married for 9 years. Otherwise I’m much a loner. But support from mental health groups seems helpful. It’s what got me through the last episode and helps me today as well. It’s like they give you whatever you need. They give – not things – but help. I do one on ones and groups.

What does an episode look like for you?

The last was very severe. I was dissociated, very far away inside myself. I had mania highs, was very happy. I also had a feeling I called the drunk feeling – I felt like I was drunk. I was very paranoid. I don’t get low but the dissociation scared me, cause I don’t know how to get out of that. I acted as a child at the psychiatrist’s, would say very strange things to him. The dissociation came last. If I get down it’s only for a day. I didn’t sleep much, and I should have been hospitalised, cause I was still driving. In the doctor’s office a feeling of love came over me and it stayed six weeks. I didn’t hear voices or see things, I never have. At the end I started losing time, I wanted to be with the stars. I was psychotic then, leaving reality. Then he put me on a med, stopped it really quickly. I didn’t know if I was dreaming or awake. This all lasted a long time. It took months for the dissociation to go away. It was the only thing the meds didn’t handle. I believe my illness if dissociated from myself. I would have different characters as well. My doctor told me I don’t have split personality, but I had characters. I can’t remember them all, some are common to bipolar. I get something I call the genius. I can learn anything, but I am manic so it doesn’t last long – a few days. I probably had seven characters. I believe the characters are a dissociated part of myself, that somehow shattered as a kid.

That was very honest, thank you. I have an alter called Eve. Did you find they had very different personalities to you? Did they ever get confused with “you”?

It’s hard to remember the characters now. I can only remember the genius. But that’s often come before with other episodes. When I was acting as a child I think that’s just who I was as a child – I didn’t call that a character though. Everything seemed very normal to me. The doctor told me I was deluded three times. It was so funny cause I was happy to be deluded then, if he says I am, this is awesome. I was only frightened by dissociation. I didn’t know they were called alters. Is she very much like you? When you say did I get confused, everything seemed normal to me when I was ill. I didn’t understand my language with the doctor. The weird things I would say but they were all based in my reality. So it made sense to me. Though later I understood better. Stress seem the thing that made this episode severe, so I never allow myself to be stressed. I don’t put myself in any situation where there will be high stress, or I will get out right away. I think that is very important, stress is the trigger and no one is worth stress to me. No one – and I love people very much.

I can relate to so much of what you have said – thank you for chatting and being so honest.

An Interview with B.P.

The World Of Now

I’m sitting here watching The Last Leg on catch up and it’s just hit home to me just how painful it is to live in this awful world sometimes. Somehow the news of Orlando and then Jo Cox felt removed until I saw grown men who make a living off their brand of funny getting so emotional about it without a hint of humour.

The husband and I are talking about bringing a child into the world next year, and we’re taking steps towards becoming ready for that. One of the big things to do is get me off meds and stable without them, and that’s a big, scary ask. With the whole world seemingly falling apart around us, I wonder what will happen in the world my child will have to inhabit. Even here in Woking, last night, I walked to the store and saw a heavy police presence. Today I found out they were out to catch a guy with a weapon, which thankfully turned out unloaded.

I’m trying not to get in a tizzy about things, but the more that happens, the more freaked out I get. I am anxious, I am afraid, and I don’t know how much of my fear is actually rational. Tonight I obsess about keeping the husband safe. Four years ago I was worrying about the same thing out of paranoia. It’s only four years later, and it’s now a fairly tangible threat.

The world sucks and I’m not dealing with it particularly well. What do we do next?

The World Of Now

A new chapter in my mental health journey

“You’re doing so well, we’re going to discharge you back to primary care,” said P, my care coordinator. This was on Friday, when I finally had a day off and could attend an appointment during working hours; CMHRS (community mental health recovery service) is not geared up to help people who can still hold down a job whilst under their care. I will admit to a flash of panic when he mentioned discharge, but this settled into a kind-of-irritated-yet-relieved feeling when I realised that the discharge would mean never having to broach the uncomfortable subject of wanting to see a different CC.

It’s true, of course, that things are incredibly well improved since 18 months ago when I found myself in crisis care for the second time. That notwithstanding, I am still struggling with certain things but have generally been bottling those things up for fear of acknowledging that they are issues. When you get to a point of appearing well it feels like you can’t renege on that unspoken deal with the people in your life who are pleased with your progress. I’m not saying it’s all hell-on-earth lately; I will be the first to admit that things are probably the best they’ve been since the first breakdown four whole years ago.

There is a fear that comes with being discharged back to primary care that has me worried. I’m rather afraid that these things are simply lying dormant and waiting for their moment to reappear – and with a new job on the horizon I can’t risk things heading south again. There’s a good chance that the new job will be an amazing change for me, and I am very excited to get started on a career path that I know I want to follow. The worries lay in the fact that changes are often a big trigger for me. But as with everything in life I will simply have to take my steps on this new path and see how things go.

The benefit of going back to primary care is apparently the access I will have to talking therapies. We tried to make group therapy work through CMHRS but because I have work during normal hours it has been a dead-end. According to P they will recommend my GP puts in a referral to IAPT (Improving Access to Psychological Therapies) who can accommodate out-of-hours appointments. This is pretty much the only reason that I didn’t 100% freak-out about being discharged. I’m at a point where the schizoaffective stuff is well managed and rarely causing too much trouble. The problems and challenges I face presently are centred around interpersonal relationships, my relationship to myself and my reactions to external and internal factors – and there’s no medication that can fix that.

I really, truly hope that the discharge to primary care is what will work out for me long-term.


A new chapter in my mental health journey

Adventures with Anxiety

One of the most difficult things to deal with is a budding anxiety attack whilst in the office. Today I find myself sitting at my desk doing just that. Trying to resist the need to go chain-smoke nicotine into my system; if I went for a smoke it would help, until I got back to my desk and started fretting that people would notice that I’ve been away and wonder just how many breaks I’ve taken. I’ve even started timing my breaks to make sure a) I’m not taking too much time away and b) I’ve got some kind of evidence should the point be raised regarding breaks. It’s happened before; I am not getting caught in that situation again.

The anxiety absolutely sucks. I feel like I’m running fast – too fast – and wondering constantly if I’m messing things up; surely if I get the deck cleared by 2pm I’m doing something wrong, says my worried brain. But things have always been like this at work. I’ve always been this person who gets on with things and winds up facing down a long afternoon of slow hours because all the work is up-to-date. I’m new here, so maybe I’m missing something, but I’ve tried asking a few people what happens in the afternoons and haven’t had much by way of a definitive answer. It’s not like I’m kicking back and relaxing from here on in; being who I am I’ve been obsessively refreshing the work queue and picking off the tasks as they appear. But it feels repetitive and endless – my brain is barely engaged with the task beyond not making mistakes. It’s super dissatisfying.

And the long afternoon feeds the anxiety, which in turn feeds the drawn out hours ahead of me today. Really what I want to do is head home, dive under a duvet and try to relax. If I was at home I’d be able to paint, or do some colouring, or watch silly television till the husband gets home. This is where I have a real issue with the team at CMHRS who tell me that I should be using my coping skills to get through these anxious times; that’s all well and good for when I’m not in a situation where I can’t actually use anything beyond chain-smoking (and that’s still not really an option) and writing. Having said that, it’s not like many anxiety meds seem to help me – not that I’ve tried them all. But benzos don’t work; diazepam, temazepam and lorazepam have all failed to touch the anxiety when it hits hard. And developing coping skills is hard when all their offerings of therapy involve a group I can’t make because I’m working when they meet.

I’m really actually quite annoyed with the whole therapy situation too. There’s nothing I want more than to get to grips with the behavioural aspects of these disorders I have been labelled with and beat down the negative effects they have on my life. It would be wonderful to be able to learn to cope with things, but that doesn’t seem to be happening. I am so proud of myself for continuing to work – I think more people with mental illness should be encouraged to do so – but it does sometimes feel like CMHRS assume that everyone with diagnoses is out of a job and there’s no provision to deal with people like me who would ideally need out of hours appointments. The next time I see my care coordinator is May, and I’ve wanted to see my psychiatrist for a while to discuss changing my anti-psychotic (because I can’t seem to shift the weight, and olanzapine is notorious for that issue). There have been a few occasions lately where I really have missed my old care team; where I’ve wanted to be able to pick up the phone and call someone I’m comfortable with who can hear me out and help me calm down. I simply don’t feel able to do that with the current CMHRS set-up.

I feel like I should round this off with some positives but I’m struggling to see the light today. So I’ll leave things as they are, and hopefully have a cheerier post for next time.

Adventures with Anxiety

This is Sunday

Oh holy hell, what a weird place to be. The mental inner-dialogue is speaking a language made up almost entirely of expletives right now, because I am hypo and it feels like the worst thing in the world. Hypo is the worst thing. Or maybe I’m using absolutes simply because I am in that kind of mood. Either way, I want this mood to sod off and leave me alone.

The problem with being hypo is that it’s a kind of no-man’s land between ‘normal’ (yes please) and full on mania (no thanks). If I was in normal mood territory everything would be fine. If I was manic, I’d likely be acting out but at least I wouldn’t care about the consequences. Instead I’m in the middle, where all I really want is to head to the pub and start sinking pints, or jump on a train somewhere for a while… This mood where I want to do all these things my brain thinks I need, but I’m still ‘me’ enough to know that I shouldn’t misbehave. I hate this.

So, the only good solution I have to these moods is to simply sit on my hands and try to ignore the urges, the need to cut loose and let my hair down. I have to remember that I’m still working on living a normal life, with a normal job and that normalcy is a good thing. It is a good thing.

It is a good thing.

This is Sunday

The NHS Service

Goodness, it’s been a fair bit of time since my last post! If anyone actually still bothers to come by, I suppose an update is overdue… #inwhichIrantaboutNHSservicesbutgenerallythingsaregoingwell

It has been a fair while since I saw anyone from CMHRS. Things got a little confusing; I finally got my psychotherapy referral through, but then got put into an emotional coping skills group pending my referral into PD STEPPS group. Eh, group is not a setting I find therapeutic! I went to the first emotional coping skills session and never said a word. It wasn’t like an ‘air your issues’ forum, more ‘let’s go through skills together’ workshop. The thing is, I know the skills. I do! I’m rubbish at practicing them, and I find very few work for me. I also felt totally railroaded by the bigger personalities in there. But – being who I am – I kind of chickened out of calling the psychology worker and letting her know. I did try to call to tell her I wouldn’t be attending STEPPS group though; I’d have loved to give it a try but with starting the new job I could hardly be away from the office for a whole morning every week.

Anyway, that’s the story with therapy. For now, it looks like I’m going to have to go back to paying for one-on-one sessions privately; kind of defeats the point of the NHS services. The other problem I’ve had with CMHRS lately is their working hours. In this job I work 9 to 5:30, with the odd week of late shifts here and there. Of course, CMHRS close at 5pm. Meaning getting in touch with my care coordinator is really quite tricky; especially when I’m not supposed to text or email him. I broke the no emailing rule to at least schedule an appointment. But, when I have a day like the other day, where I was spinning with anxiety and dissociating at work, I really could’ve used a friendly helper on the other end of a text message. I really miss K and Doc P from EIiP, I knew I could rely on them to be understanding and helpful if I needed them.

Hubs and I have been discussing asking to switch care coordinator actually; as hubs puts it, P could use his time better on another service user. I don’t feel able to approach P with issues, and – being honest here – I need a gentler style. I think I need someone who can empathise with what I’m saying; someone I feel able to call up and ask for help with whatever issue. This last year, I’ve hardly made contact; though I have wanted to on a few occasions.

TL;DR: There’s a lot of work still to do, but I think things are on the right track.

The NHS Service

Day Two

You’d think that the first day in a new job would be the hardest… somehow today is feeling harder. I am rather anxious, pre-work; I’m not sure why it’s worse today vice yesterday. I mean, I know the people are all really nice, I think it’s a decent job that I know I can do… so why this level of anxiety over day two?

In part, perhaps it’s a level of sensitivity to being around people again. After all, I’ve only really spoken to Luke and family in the last four months. So that old thicker skin has softened and I find myself over analysing every tiny thing I do. That’s pretty common with social anxiety I believe… that acute awareness of when you do something “wrong”; even if it’s not really that wrong by normal standards. You make a little joking comment and it falls short: “ah crap now they hate me and I look like an idiot!”

I want to work, I really do. I just need to learn some patience with myself to allow myself time to get back into the swing of things.

Day Two