Tag Archives: Mental Health Management

Adventures in Mental Healthcare: Hope

Today marks the start of Scottish Mental Health Week. As usual, whenever we reach an awareness day that applies to me, I feel annoyed that it’s still necessary. It’s 2013, aren’t we supposed to be sufficiently advanced and well-educated that we don’t make stupid judgements based on sex, age, orientation, race, whether you’ve ever had a physical or mental illness, or any other damn thing that people don’t have a choice in? Wasn’t this all supposed to be sorted out by now?

Maybe it was supposed to be. But it’s not, so for the present I will continue trying to reconcile my understanding of why we need these awareness exercises with my anger at the fact that they remain necessary.

I got involved with this year’s Scottish Mental Health Week unintentionally. I write ten minute plays for Jo Caulfield’s Speakeasy, and it just so happens that tomorrow’s Speakeasy is embracing the Mental Health theme. My play, Hawthorn & Candlelight, is not about mental health issues. It’s a comedy about a book of spells, so I suppose that if you were determined enough you could read it as an exploration of magical thinking and trace its roots in my own adventures in Schizotypal Personality Disorder, but that wasn’t my intention in writing it. I wrote it as a bit of pre-Hallowe’en fun and that’s about it. If my contribution fits the theme it’s not because of the play itself but because of what I am – mentally ill and “out”.

The fact that it’s Mental Health Week also makes me think it’s a good time for an update about my own situation and how things are going. Last time I wrote about this I was struggling to get access to the help I needed – most importantly, someone who could advise me on medication. I finally gave in and played another round of Russian Roulette with the meds, allowing myself to be put on fluoxetine to keep my serotonin levels in check. So far I’ve been fine – there’s none of the nausea I got from paroxetine or the memory loss and anxiety spikes that characterised my experience of sertraline. However, I’m still on a low dose just now. The real test happens in winter. At some point I usually tip from chronic dysthymia into a Major Depressive episode, and that’s when I have to increase my dosage and find out if my body can handle it.

I was also trying to find a suitable form of therapy to complement the drugs. I’ve been doing CBT on my own for over a decade and it’s a particularly useful weapon to have in my arsenal, but it’s not a magic bullet, and I have hit a point where either I need a different kind of therapy or help with expanding my CBT skills. As it stands, CBT helps me to combat depression and it was fantastic for dealing with OCD and StPD. Having got these things to a point where I can manage the symptoms, I now find myself dealing with issues that are more PTSD-related. I really want to get to a point where I don’t have nightmares, hypersomnia and a wide range of triggers that stimulate fearful, avoidant reactions. I want to be rid of the paralysing terror that accompanies the belief that everything I love dies.

Getting this kind of help is, as I have chronicled here, not easy. CBT with community psych nurses didn’t help me, because the CBT they were teaching was all stuff I’ve been doing on my own for over a decade. Eventually I lucked into an appointment with a GP who seemed to understand, and I made a particular effort to let the mask slip. I’ve been dismissed too many times for not appearing to be crazy enough because I can still do things like bathe, brush my hair, dress in a manner that makes me look pulled-together. I can still do these things until I am pretty far gone, because I have lots of practise.

During my first major depressive episode I learned that allowing myself to look depressed attracted attention. I didn’t want attention. I wanted people to stop noticing me, not ask me stupid questions about whether I was all right, to look the other way while I quietly got on with the task of destroying myself. So I wore make-up long after I stopped caring about my appearance. I wore my hair up to disguise the fact that it hadn’t  been washed in days. The way I dressed didn’t change, because at 18 I wore a uniform of black velour trousers, black t-shirts and sweaters. There was no tell-tale day when I started wearing jogging bottoms all the time, because there was nothing in my wardrobe that would allow me to live the cliche. For several months, as I gradually stopped eating and talking and dropped out of one class after another, I still looked like my normal self. Eventually I lost the ability to keep it together and began to look gaunt and dishevelled in spite of my repertoire of tricks, but I held out for a long time. By the time I started to look depressed, I was too far gone to seek help of my own accord.

So now, when I know I will be talking to a GP about my mental health, I make a conscious effort not to conceal the effects of my mind on my body. No make-up. No dry shampoo. I try not to think about the appointment until I get there so that I haven’t prepared what I’m going to say and how I’m going to keep my voice level while I’m doing it. When the familiar feelings of pain and fear arise, I try to let them show. After more than a decade of training myself not to show those feelings, that’s no small task. It’s not easy to bring that stuff to the surface because I never trust that I’ll be able to get on top of it again. But if you look like you’re coping, they assume you’re coping, so it has to be done. After many years of trying to tell doctors how badly I was doing without having to come right out and say it, I finally did. I explained about my convoluted suicide attempts and self-destructive behaviour, told them that even now, when I’m happy and loved and things are going well, I’m also depressed and fearful and every winter I dread that this might be the one where I just can’t take it any more.

The message got through. At last, I got an appointment with a psychiatrist. By this point I had started on fluoxetine, and the psychiatrist advised me that it was probably my best bet just now, which was comforting (if a little on the late side). He referred me on to the psychotherapy department at the Royal Edinburgh, so I finally had to bite the bullet and get over my fear of going there. Previous experience led me to expect a 45 minute triage appointment, during which I would have to try to give a potted account of myself and what I was looking for. Fortunately, this was nothing like my previous experience…

I had three triage appointments in total, all with the same doctor. There was time to give a full explanation of all the previous diagnoses and experiences and life events. The doctor talked me through my options and made some suggestions, and between the two of us we figured out the next step. I’m now on a waiting list for individual therapy to help me work through the PTSD. The down side is that the waiting list is long, so it may well be next February before I start – but simply knowing that the wheels are in motion helps immensely. In the meantime, I know what my options are if things get too difficult around the anniversary of Mum’s death or over the winter. I feel much better informed. And because this is being done on the NHS, I’m not freaking out about how to afford it.

After so many false starts, getting this far is a massive relief. When people talk to me about their own battles with the system, it’s really nice to be able to say “don’t give up, it is actually possible to get help” rather than simply sharing their despair at getting nowhere.

Keep trying. And keep talking. I might not always have the energy to respond to the comments and private messages I get after these posts, but I always, always read them and I always care.


A long and frustrated mental health post

Creative Scotland has taken over my blog for far too long. I’m still talking about the latest twists and turns in the saga over on Twitter, but the most recent piece of [headdesk]-worthy action took place while I was caught up with the double bill. Besides, Hannah McGill has been well and truly on the case and I don’t really have anything to say that she hasn’t already covered. I doubt I’ve written my last Creative Scotland post, but there are other things I need to write about just now.

So back to one of my other major topics: The Crazy and how to live with it. It’s that time of year. The dawn simulator has been back on my bedside table for a while. Mornings are just that wee bit harder than in summer (yes, even Scottish summer). And after my last self-sabotaging battle with myself, there’s an alarm set on my phone to remind me to take my antidepressants.

I wish it were as simple as just taking the bloody things, but instead it’s a minor skirmish every time that alarm goes off.

You  see, I hate taking antidepressants. I understand why I have to. My body is physically incapable of producing, transporting and absorbing sufficient serotonin by itself. So I get it. If my body won’t do this by itself and it’s a chemical I can’t do without, medication is necessary. But I hate it.  Logically, I understand that this mental illness is a manifestation of a physical problem and that I can’t overcome it through willpower alone. But to hell with logic – the point is that I hate that this is something I can’t control without relying on drugs.

Having established that, let me make it clear that any comments suggesting that I don’t really need antidepressants and could probably just take St John’s Wort or do more exercise or find god instead will not be met with grace and gratitude. I’ve spent the past 12 years learning the hard way that I have to take these drugs. Believe me, there’s only one possible outcome to my not taking them – my mental state deteriorates to the point where I stop eating or talking and start causing myself physical harm.

Earlier this year I had to increase my dosage. The dose I was on was no longer working for me. I could feel the symptoms of depression kicking in again, so I did the sensible thing and asked my GP for a higher dose. She put me on the next dose up. I’ve been round the block often enough to know that side-effects are to be expected and that the best thing to do is just hold tight for a while and see whether they subside. When the side-effects emerged, that’s what I did.

Within a few days of starting the new dose I noticed nausea, increased anxiety and problems with my short-term memory. I persevered for six weeks to see whether these side-effects were just teething problems, but nothing changed. I can deal with the nausea – it’s not pleasant, but as long as I eat little and often and/or suck sweets or sip water, I can manage it. The memory problems were much more of an issue. I’m used to having a rather good memory, but now I find that I reach for information and what I get is fog, or that tasks and appointments are completely forgotten unless I write them down (and I don’t always have time to write them down before they’re forgotten.) That scares me. It’s really unhelpful, especially as I’m self-employed, and it’s really worrying considering that I will probably have to increase my dosage again in future and don’t know whether that will make things worse.

Knowing that short-term memory is affected by concentration and that my concentration has always been affected by increased anxiety, I went to the GP to ask if there was anything I could do to control the physical manifestations of the anxiety. I was given beta blockers, which made me so dizzy I couldn’t stand and then made me fall asleep.

As you can probably imagine, that wasn’t ideal for getting through daily life. I stopped taking the beta blockers and asked to be referred to a psychiatrist to help me find antidepressants that will keep me from being depressed and suicidal but will still leave me in a fit state to live  and work. In the meantime, I was already struggling with self-destructive behaviour patterns. I got married at the beginning of the summer and found myself caught up in a massive internal battle between my newfound happiness with my husband and the depressive part of my brain that tells me I’m not allowed to be happy and that everyone I love dies. (Yes, that is what my brain is like even when I am taking antidepressants.) In my infinite depressed wisdom I decided the drugs weren’t working so I wouldn’t bother taking them.

Well, that worked out predictably badly. My mental state deteriorated, I found myself relying more and more on the façade and increasingly scared of being around lots of people. I did a bit of self-sabotage. Then finally the sensible bit of my brain remembered that I’ve done all this before and that it might be wise to take my tablets. Just for a few days. So I went back on them and voila, the greyness started to retreat… taking my short-term memory with it and leaving anxiety and nausea in its place.

After that I began trying to work out a viable pattern. Halving the dose doesn’t give me enough to keep the depression fully at bay, but more than half lets the side-effects run riot. Taking one tablet every two days is the same as halving the dose. My next move is to re-time the alarms on my phone and try one tablet every 36 hours rather than every 24.

I also went back to the GP for something unrelated, but while I was there I asked how my referral to the psychiatric department was coming along. The GP looked in my notes. Nope, nothing there about a referral to see a psychiatrist – just some stuff about my time with the community psych nurses. Why, did I want to go back for more CBT with them?

No, I damn well didn’t. If I want to do CBT worksheets (which I don’t, because the way I learned to do CBT was much more free-flowing and didn’t rely on worksheets as if I were still in primary school) I can do that by myself. I can certainly do it with a hell of a lot less judgment than I encountered from the two community psych nurses I saw before deciding that this really wasn’t for me – all they seemed to want to do was contradict my existing diagnoses and do those bloody worksheets. (Forgive me if I don’t give much credence to their contradictions, but I’m more likely to trust an actual psychiatrist who gives a diagnosis based on considerable observation and proper assessment techniques than a psych nurse who bases it on a five minute conversation and the infallible logic and clinical analysis that says “you couldn’t possibly have had a personality disorder at 18, that’s far too young”.)

So no, there will be no more psych nurse visits for me. Perhaps there are excellent psych nurses out there, but I got burned twice in quick succession. Also, CBT is not the answer here. CBT helps me with day to day management of my mental health, but it does precisely nothing to cause my body to produce, transport and correctly absorb serotonin. It’s the drugs that do that, and it’s the drugs that are causing me problems so I need to talk to someone who, you know, knows about drugs. GPs are barely trained in psychiatric medicine, hence my request for the referral in the first place.

I explained all this to the GP who told me that she was new to the area and didn’t know what was available, but she’d find out and let me know. To her credit, she did – but her letter was deeply disheartening. Apparently my options are 1) go back to the psych nurses for more CBT worksheets, because somehow that’s going to achieve something and not just waste resources that might actually benefit someone else or 2) go to a private clinic for which details were enclosed.

I checked out the private clinic. All it offers is psychotherapy. I have found psychotherapy useful on many occasions, but this time I do not need a therapist to talk to. I need someone who can advise me about medication. A psychotherapist cannot do that. A psychologist cannot do that. Who can do that? A psychiatrist. I’m not asking to see a psychiatrist because I think they’re higher status than psych nurses or psychotherapists or because I want preferential treatment, I’m asking because they are the people qualified to do the thing I need them to do.

So realistically, my options are 1) continue with the medication and see how long it takes for me to get myself into trouble for forgetting something important or simply being paralysed with anxiety and unable to do things, 2) find a private psychiatrist and hope against hope that I find a good one first time because at their hourly rates there’s not much room for trial and error, or 3) come off the meds and see how long it takes for me to deteriorate to the point where I am hospitalized, because at least there’ll be psychiatrists in the Royal Edinburgh. That last one really scares me. So far I’ve always managed to avoid being put in hospital. Even first time round, when I absolutely couldn’t take care of myself, my parents looked after me at home. Even last time round, when I was breaking my own bones, I only ended up in general medical. It’s unknown and I’m scared of it, and it would be the ultimate confirmation that my mental health is not under my control. And the path to get there is really horrible and involves the risk that I’ll succeed in doing myself permanent or terminal damage before I succeed in finding help.

I’m not particularly keen on any of these options, but most of all I’m frustrated – not just by the lack of care available, but more than anything else by the fact that the GP doesn’t appear to know the difference between psychotherapy and psychiatry. This is one of the biggest and most exhausting obstacles that you face in dealing with the Crazy. The GP is your first port of call, and even if you can get them to believe you (easier with depression than with just about anything else, but still tricky) it’s a real struggle to get access to any help. You might be lucky and win the antidepressant Russian Roulette where the GP prescribes you whatever’s cheapest and it either works for you or it doesn’t, but if you lose, my current situation is about the best you can hope for. I don’t know where this will end and all I can do is hope I don’t lose too much along the way.

The option I choose, unsurprisingly, is to start looking for a private psychiatrist and hope I can find one who isn’t charging £300/session. I have to keep reminding myself that while the illness is forever, psych sessions are not (because, guess what, I don’t like them either – not a fan of anything that suggests I can’t deal with this entirely on my own). All I need is long enough to get advice and a new prescription. I’m very good at monitoring on my own and following up with GPs. All of this is about making that very first step. I wish it didn’t have to be the most difficult and disheartening step of all.