Of Eric and Ogden

At the end of July I had a consultation with a psychiatrist that I’d know fn a long time. I was feeling manic and had done for nearly a year and it had stemmed from an attempt to go medication free. Being medication free is the Holy Grail for most people with mental health problems and it’s something I try to do far too much and each time I say I’ve learned my lesson. It happens again though because I’m desperate to be medication free because that would mean that I no longer had bipolar disorder.

There was a lack of decent communication between me and Eric which meant that, after a precautionary CT scan, a wild manic episode and a visit from a psychiatric nurse I found myself referred to a memory clinic. Luckily I’ve known Eric since he moved to the city and took up his post here and I’m also very good at standing my ground. Years of being an active mental health advocate have armed me well and believe me, if you’ve got Nick Ferrari to cut you off in an interview mid-sentence then you’re a bloody good advocate.

Today I went to see Eric. It’s a long journey – two buses each way – because it’s out on the far edges of town. It’s inconvenient but it’s a beautiful place and the staff are amazing. I was prepared to stand my ground and be firm but polite until I got what I needed which was a revision of my medication and a cancellation of the referral to the memory clinic.

We sat down in a comfortable room beside a small table in a way that our body language indicated both respect and a willingness to listen on both sides and listen we did.

I explained how I felt that, though he’d taken accurate notes at the last meeting, the situations were out of context or in the wrong context entirely. He explained that I’d not explained them as precisely as I thought I had and that what we’d ended up with was us being at cross purposes.

We reviewed the notes and amended them and then he asked me how I wanted my medication changed. We agreed on a crisis plan and decided to increase on of my medications and look towards a long, slow improvement so as to lay in a good foundation for what passes for stability.

It was a good meeting and worth the 3.5 hours it took to get there, have the meeting and get back home.

Ogden hasn’t been left that long for a long time and I was a little worried that he’d fret while I was out or feel that I’d left him. He was amazing and was very happy to see me. He’s since settled back down to his normal sleep 14 hours a day and I can’t be happier about it.

So – a potentially hard day turned out to be less difficult than I thought and I got the result I needed and made a good working relationship even better. My beautiful rescued dog moved forward a step in becoming more secure which is so wonderful. Tomorrow as a treat for us both we’re going for a long walk with a friend and her dog and watching a scour of the local harbour.

Facing up to life can be hard at times but at times it’s worth the while.

Equality and the doctor’s receptionist

This isn’t a terribly coherent post, I just really need to rant or else I’d be tempted to lamp somebody.

I’m a bit angry and I’ve really, really, really bit my tongue hard during a phone conversation I had about half an hour ago.

I have this pain in my left breast and it’s not in one particular part so for a couple of weeks I’ve been thinking nothing of it but it won’t go away and it doesn’t feel muscular so I rang my GP’s surgery to get an appointment.

It’s constantly drummed into us by health professionals that it’s important to get bumps, lumps and twinges checked out when they’re in your breasts (and testicles for men of course) and so that’s why I was ringing.

My GP is on holiday and he’s not back until the day I go away so there’s no way he could ring me back and give me some reassurance or let me pop over and get checked out.

I have two choices it seems – I either ring up at 8.30 tomorrow and see if I win the appointment lottery or I talk to the on call doctor today and be treated like an emergency. I can’t ring up tomorrow because my memory is shot to pieces and if I’m out with the dog I have nothing to make a note on and will have no idea of what time I’m supposed to be there if I’m lucky enough to get an appointment. If.

I asked for a note to be put on my doctor’s screen so when he gets back he can see it because I’m going to have to talk to him about it as, since he’s my key doctor, he looks after the whole of me not just the mental health bit.

This confused the receptionist big time because she wasn’t convinced that she could leave a note for my doctor and ask an on call doctor to ring me. I persuaded her that since the system for appointments etc. was inadequate and that I don’t fit into the options open to me then I needed my GP to get the message and, whether this pain is an emergency or not, I need to talk to somebody about it.

Then the defensive language came – you know the stuff. “I’m just doing my job.” “I can’t change the rules.” “I’m treating everybody equally.”

I wanted to scream at her. The system doesn’t treat everybody equally – it doesn’t leave room for people like me who have complex problems and live alone but it will give priority to physically disabled people but if the disability isn’t obvious then we’re expected to sit in the corner and play with the crayons.

I asked her to feed back that the system is inflexible and inadequate and that I’m sure I’m not the only person that feels that way. Surprise, surprise – I’m not the only one. Will she feed it back? No, because that would be mean going to someone she feels is powerful (and therefore gets to hide behind their power) and acknowledging that an imperfect and inadequate system may seem to promote equality but it actually discriminates.

There is a glass ceiling when it comes to disability and those of us with mental health problems or invisible and/or undiagnosed (I’m trying to handle the news that there may be something wrong with my brain too) hit that ceiling quite early on. It’s as if we’ve brought it on ourselves and that any anger we feel is either a result of our mental health or ingratitude when really it’s more about a desire not to be treated like a pile of shit.

How to pronounce ciabatta, a rant & phoning the BBC while asleep

I’ve got listings on a website to update but I won’t be able to settle down and do them until I’ve written. I have little idea of what I need to say beyond the opening paragraph but I know I have something to say – whether it’s meaningful or not is unimportant.

I’m wondering if I’m setting off on a manic cycle again and I think I may well be is my ex’s pronunciation of “ciabatta”. I used to tell him that see-a-batta was incorrect and that the “I” made the “c” soft therefore the pronunciation was “cha-bat-ta” but he’d have none of it. His response to my correction was the same every single time – he’d had a couple of terms in a private school so that made him more knowledgeable than me (untrue) even though I took Italian lessons in my 20s.

Not an ugly duckling website

Anyway, now that’s out of the way I shall tell you about the letter I got from the mental health trust telling me about the appointment I’ve got with them next week.

I was a bit shocked when I read it because even though the trust purports to provide mental health care the way the letter is written is distinctly uncaring.

It didn’t name the person I was going to see even though a telephone conversation recently and a referral from my GP made it clear that I have far too a complicated “picture” to be seen by a junior doctor. It didn’t even say that I was going to see a doctor just a “mental health practitioner”. What kind of practitioner? Consultant? Junior psychiatrist? Nurse? Occupational health? Student?

I rang and asked who I was going to see and they refused to tell me on the grounds that it may change at the last minute. I reminded them that I had to take two buses to the location which was potentially three hours travelling (for an appointment within a reasonably small city!) and I had a right to know who I was going to see. I eventually got it out of her and I was happy with the person who she said it was and if it changes at the last minute then I’ll have to deal with that if it happens. I won’t cope very well with it but if I want a medication review then I have to do.

I suggested that the letter should name a person with a rider that says it could change at the last minute to be asked, “Who would that benefit?” I gave her the tired spiel about anxiety and enabling people mental health problems to feel empowered and valued but apparently the staff are too busy for all that. Or at least the clerical staff are anyway.

The bloke I’m seeing (fingers crossed) is a great person and I will raise it with him when I’ve finished bending his ear and asking for more drugs and he will listen to me. Why am I so sure he’ll listen to me? He will because I told him of how I’d made a phone call in my sleep and had no memory of it when my call was returned and he told me that when he was a student he’d rang the BBC in his sleep (his brother witnessed it) and asked to speak to his mother who didn’t work for the BBC…

Stop the world, I want to get off

I’m waiting to see a psychiatrist again. My GP requested a referral and we’re both hoping I’ll get to see my last consultant mainly because he’s amazing at his job but also because I saw him for about 10 years and we developed a mutual language so it would be easy to talk to him. I can go in and tell him I feel well fucked up and he’ll know what I mean. Priceless.

I’m ultradian cycling (though at this point it’s only one change every 12 hours or so) and this started on Thursday. It was odds on it was going to start – EU Referendum, opportunity to write about it for a website and staying up all night to listen to the results – it was never going to end well. Politics leave a lot of people cold but I love it. I’m not eloquent about the subject but I know what I believe in and that passion, like all the others that inflame me, burn me out with mania and turn me into ashes with depression.

I’m fed up with the in-house mud slinging of those within the Labour Party re Jeremy Corbyn. He was voted leader by people who know that, despite the leadership and Tory Lites of recent years, the Party was born in red brick houses and not red brick universities. If he is deposed then the Labour Party membership will drop overnight.

I’m not at all surprised at the antics of the Conservative Party (has anybody found George Osbourne in their shed yet?) and the desperate please of the Liberal Democrats is rather sad but have any of the shit stirrers thought about what this is doing to me and all the other vulnerable people who have elected them, voted in the referendum and left feeling scared at the uncertain future that has been created?

I’m in that tiny section of people who are considered so ill I was put in the support section of ESA for life (without a face to face assessment) because the risk of me committing suicide if I was forced back to work is too high for them to take the chance. This means that my income is guaranteed but I am not invulnerable to rising prices, higher utility bills and I cannot tell myself to worry about life in the UK because it is something to worry about.

Anyway I’ve been so manic that I can’t get the words in my sentences in the right order and today I’ve dipped into depression and couldn’t care less if my words are in the right order or not. I’ve decided to focus instead on a day out in London I’m having on Thursday and if I burn out then so be it.

Meanwhile the country is being fucked roughly by the people we have trusted it to. Bastards.

The deterioration of self…

I feel as though I’m disappearing quickly and all that is left to see and feel is mania (though one day I’m sure that mania will be replaced by depression). It’s quite a dramatic thing to think and say but it is by no means the statement of a drama queen.

Last week I went away off to London/Kent for a few days with my wonderful dog who came to live with me as a rescue last year. About 6 weeks after he arrived I made a similar journey with him and he coped admirably but last week was totally different. His first visit was made whilst he was still timid and not sure of who I was or that this was his new life and last week he was brimming with confidence, playfulness and a need to demonstrate that I was his mum. It was exhausting.

On the way back home we got to Paddington station early so he could calm down and sit in the waiting room peacefully instead of the hour in Hyde Park that I’d planned. It would have been fun but he’d have been so hyped up it would have been nearly impossible for him to sit still on the train. While we were waiting for our train the sad news filtered through that there had been a death on the tracks just outside of Reading and that meant changes to the journey. We got on an earlier train and that meant a 40 minute journey at the other end by bus before a 20 minute walk home – small changes compared to somebody losing their life but the impact on me was bigger than I expected.

I found myself sat on the train crying which, being in a chronic period of mania, is unheard of these days. I felt confused and unable to cope with getting off the train, walking 100 yards and getting on the rail replacement bus. It felt as though I was facing an arduous journey. Luckily I was able to talk to the train manager and show him my railcard that states I’m disabled and he made sure I got to my bus safely.

Almost a week later I’m still exhausted. After talking to my GP this morning it’s obvious that my ability to cope with small changes has disappeared; I can no longer cope with small changes in my routine. Five years ago I’d wake up really early and go off out for day to who knows where and not think about the impact on myself – I could cope with change. Even without a dog in tow I couldn’t do that now.

I had forgotten that I had an appointment with my doctor today until I got a text reminding me. It has thrown out my plans for the day because it was a small change. It has shifted my day by about 45 minutes but my brain tells me that I can’t have the day I’d planned because the timing has changed. I get a physical feeling on one side of my head as I try to reason with myself that I can still do the things that I’d planned but it doesn’t work.

It’s acknowledged that this isn’t me, this is bipolar disorder – I want to do the things that the illness is telling me that I can’t. A friend reminded me this morning that we all have limitations and that we can’t always do the things we want or need to because we can’t get our head round them and that’s true, I’m not special or unique in that way. I struggle a little more perhaps because the illness gets in the way. It’s hard going from being a spontaneous and chaotic person to somebody who is no less chaotic but is less able to embrace it.

People often say that it’s the little things that count and in my case it’s the little things that count against me.