A Chink of Light

Andy and Rita

My dear old mum (RIP) used to have a rule: if I phoned her in a crisis, I had to also remember to let her know once the crisis had passed. It’s a good rule and I’ve tried to bear it in mind ever since.

After a good few months of the worst mental and physical health I’ve ever experienced, I’m feeling a little better. This week I’ve managed to leave the house twice, admittedly once was for medical appointments, but today I actually managed to go out for a purely fun and social event! Stone the crows! I was whacked and in a lot of pain by the time I got home, but it was wonderful to be outside, to see the trees in their end-of-autumn colours, and just to breathe some lovely London pollution. Just to feel normal for a while.

I know there’s no one-size fits all with mental illness, but a few things have really helped me and I may as well share them with you.

Firstly, being able to afford the input of a private psychiatrist really helped me. Although I can’t afford to be treated by him in the long term, just a few sessions really helped me (the beneficial effect no doubt being increased by the frighteningly large sums of money dispensed) because he gave credence to my experience in a way that my NHS practitioner seem to have given up on. He confirmed I was experiencing a bipolar mixed episode and said that I must be facing unimaginable torment. Although his words didn’t take any of it away, it was such a relief to put a name to the beast and feel validated.

The downside was that the only medications available to me were antipsychotics, which have a pretty horrendous side effect profile, or repetitive Transcranial Magnetic Stimulation (rTMS) which costs £12,000 and is unlikely to be effective in the long term. But before we came to medication, the doctor thoroughly audited my life, and recommended this book which is one of the few I’ve come across to deal directly with mixed episodes.

Although the advice the doctor gave me was fairly basic stuff, especially to anyone who’s had years of therapy, it served to motivate me to kick my arse back into gear. Here’s the bottom line of the doc’s advice.

  • Stop drinking. I’ll admit this came as a body blow to someone who is a self-confessed seasoned drinker. I knew that I used alcohol problematically to deal with the crazy way I was feeling, and I was prepared to wave goodbye to that, but I also knew that there were times that I loved drinking and would really miss it. Some people can manage moderate drinking, but being a very all-or-nothing person, I know the best thing for me is to be completely abstinent. I stopped that day and haven’t drunk since, although I will never rule it out. I am resigned to the fact that alcohol will probably be a permanent struggle for me.
  • Give up caffeine. Whaaaaaaaat? Dear sweet lord, is nothing sacred? Apparently not. I quit coffee and my beloved Coke Zero and I can safely say it’s harder to give up than alcohol. Pass the decaf chai latte.
  • Practice sleep hygiene. I’m normally pretty good with this, but in my manic state was waking through the night or very early in the morning. At first I was so overstimulated I had to step away from tech from around 7pm.

With the help of the above – plus a two-week script for Xanax – I managed to bring down my mania within a couple of weeks. However, I was still left with the sticky anxiety and depression that dogs my footsteps.

In desperation, I tried CBD oil. A couple of people had recommended it to me, but I had dismissed it because I was already on so much medication I didn’t want to add anything else into the mix. However, my Xanax was running out and I wanted to come off benzodiazepines, so I got hold of a bottle from Holland and Barrett.  I am a super sceptical person, especially when it comes to unevidenced alternative remedies, but I can only describe the effect as incredible. After about three days, I started to feel far less anxious and actually something resembling ‘normal’. I was able to stop Xanax with no problems. I’d say the CBD oil helped bring my anxiety down from a seven or eight to a two or three. I’ve taken it every day since.

The other thing that has helped me no end is the selfless support and care of my best mate, who moved in a couple of months ago. He’s unfailingly caring and generous with his time and willingness to listen to my daily trials, to take me to my many medical appointments and to motivate me to go out. Not only that, he literally provides me with something to lean on. My back has been particularly bad lately and I’ve had to invest in some crutches, but thankfully I’ve not had to use them yet as I’ve had my friend’s arm to grasp. Having battled with this alone for years, his support means the world to me.

With the help of my excellent MP, I’ve managed to finally get referred away from the personality disorder service to the mood disorders team. My diagnosis remains contested, with yet another psychiatrist disputing the BPD diagnosis last week.

I also managed to get referred to a psychiatrist endocrinologist, who has recommended a trial of hormone therapy. Every doctor I’ve spoken to recently (and there have been MANY) have spoken about how the role of hormones in affective disorders is massively under-researched, and when you consider the role of hormones in PMS it makes sense that an imbalance would cause mood disruption. I strongly suspect this won’t be cracked in my lifetime, but I’m pleased to be giving it a go.

On the physical side, I’ve involved my long suffering and hardworking MP here too. He’s intervened to challenge my neurologist who refused to give me pain-relieving injections in my spine because I’d self-harmed. Still waiting for an update on this (hey, they’ve only had my complaint since June, why rush); it seems likely I’ll get some help eventually, be it the injections or an operation. I suspect it may be some months though. In the meantime, I’m limping around and relying on my wonderful housemate to dress me.

So that’s about it as far as current health developments go…I’m by no means out of the woods yet, but things are a hell of a lot better than they were.

Did I do OK mum?

 

 

A Literary Life

I’ve been mentally troubled for a long time and began self harming when I was 13.

My parents referred me to the Children’s mental health service in Sheffield, but despite the psychiatrist telling me I should be admitted to their adolescent unit nothing ever happened. I’m not sure if the referral got lost or my parents quashed it.

I was started on antidepressants at 15 and have been on and off them since. But this blog isn’t about medication, or psychiatry. It’s a journey of my mental illness through the books I’ve been recommended over the years.

My periods of depression  became really noticeable when I began work in about 1995, and after revealing my concerns my GP recommended Overcoming Low Self Esteem, by Melanie Fennell. IMG_6760

It had some useful information but didn’t help with my depression.

A couple of years later I returned to my GP for help. By this time (around 1998) the mania for CBT was sweeping the nation, and I was prescribed six sessions and this workbook:

IMG_6764

In fact, one of my psychologists was so evangelical about CBT that after one hospitalisation she bluntly told me that if I was still ill ‘it was because I wasn’t doing it right’. Not that I had untreated bipolar or anything.

Whatever, the black dog continued to follow me. After a complete breakdown whilst at uni in 2005, I finally received my diagnosis of bipolar, and was given this to read – I would highly recommend, incidentally, both for sufferers and friends and family.

IMG_6761

My (private) psychiatrist was the first person to really treat me as an intelligent equal in our dealings, and as a result he suggested I buy this weighty tome:

IMG_6770

It was pretty pricey as I recall, the flyleaf says $65, but I got a lot out of it. Although it’s written for clinicians, each case study has a ‘takeaway’ summary at the end so you can get the gist. Invaluable for finding different treatment combinations – and if you’re paying a private doctor I would rather be doing the reading on my time than his.

On the subject of bipolar I should also mention this autobiography by Kay Redfield Jamison, who is a clinical psychologist who herself suffers from bipolar. It was one of the first books I read that made me identify with her symptoms and wonder if that was me, too.

IMG_6767

After a few years respite, in 2012 I deteriorated following the death of my mum and the strain of being the sole carer for my grandma. I tried (repeatedly) to commit suicide, and whilst in hospital was seen on a psychiatric ward by a locum doctor. I had never seen her before or since. However, she immediately rubbished my bipolar diagnosis and said I quite obviously had Borderline Personality Disorder. Whilst in a recovery house post-hospital, I read this book, which again I’d recommend:

IMG_6762

It was hard to shift my mindset from believing for such a long time that my mood state was caused by neurological imbalances, to believing that my illness was a series of maladaptive behaviours brought about by childhood trauma.

I didn’t dismiss the diagnosis – I recognised lots of patterns from the book that had played out in my own relationships. My issue with BPD was then, and has always been, a tendency to pathologise normal behaviours. If someone has a stressful day and comes home and has a glass of wine this is normal, but if a BPD sufferer does the same they are ’employing a maladaptive coping strategy’ to deal with their feelings, and should actually go and sit in a field meditating instead. Humph.

There being no NHS treatment for BPD in Sheffield, the hospital recommended this workbook and thusly discharged me, duty of care completely fulfilled:

IMG_6765

It’s not a bad book and I did learn a lot about using ‘healthier’ coping strategies.

When I came to London in 2014 the debate raged on as to if I had bipolar or BPD. I was ‘streamed’ into the BPD service as I was told I couldn’t be treated for both, it was one or the other. I was told that the Personality Disorder service would offer more in the way of therapy whereas the Bipolar team mainly focused on medication. From experience I know that the NHS relies heavily on older, cheaper bipolar meds such as lithium and antipsychotics, which can severely limit normal functioning and have severe side effects. My psychiatrist told me this week that 45% of the bipolar population have type 2 diabetes (compared with around 9% in the general populace).

So, once I was under the Personality Disorders Unit I endured a year’s wait for my therapy – originally planned to be Dialectical Behavioural Therapy as in the workbook above, but eventually, in about 2015, decided to be Schema Focused Therapy. Here’s my reading list for this one:

IMG_6766

Look at that title. Victim blamey somewhat? So, you’ve gone through trauma but CHEER UP you negative Nelly else it’s your own fault you’re still poorly.

My schema therapist was lovely, and I tried hard. I understood that the one of the principles of psychotherapy is that you have to get worse before you get better, but I got worse. And worse. And worse. After about eight months I was a mess, and we decided to call it a day.

I was referred back to the list for Dialectical Behavioural Therapy.

It’s hard to explain what went wrong here except for the fact that my therapist had the empathy of a block of wood. She was impossible to establish any rapport with, and as a result I found it incredibly hard to open up. When I tried to raise this with her I was told that it was her or no-one, and when I complained to her manager, I got nowhere. The following month, I learned they had both left the service to set up together in private practice.

There followed a year without treatment. With rapid cycling of moods, extreme anxiety, agoraphobia (I booked a trip to Edinburgh to the festival and locked myself in my rented flat, never seeing one show), the only thing that kept me going was my substance misuse worker. I’d originally been referred for help with drinking as I was drinking heavily to cope with my moods and this often precipitated a suicide attempt. After about four months of seeing my worker, she said i no longer had a problem, but we carried on seeing each other because she knew I was getting no therapeutic support.

All the good ones leave, and in June 2017 she sadly she went off to work for another trust. My condition deteriorated rapidly. I was self harming, never leaving the house, not even washing, and having flights of mania within all this. I was (and remain) like a butterfly trapped in a lighbulb.

I took the only remaining option and went to see a private psychiatrist. Within less than two minutes of seeing me (and assessing the questionnaires I’d completed in advance) he diagnosed me with mixed affective state bipolar. I was back where I’d begun.

Mixed affective state bipolar is not the same as bipolar one or two, so I was given further reading to try and understand my condition. Today’s book:

IMG_6763

To be frank, whereas I eagerly attacked most of the other books, desperate to understand the hell I was going through, with this one I just feel tired. I feel like I could see 10,000 different psychiatrists and get 10,000 different answers – each one swearing that their predecessor had it utterly wrong.

But for now, it’s what I have.