The problem with peer support

This post is inspired by a tweet from 

@Agnieszkasshoes, who wrote...

"Survivor bias is so potentially toxic through victim-blaming and gaslighting. 

For those of us lucky enough to have "pulled through" anything it's so easy to tell others "I got through so will you". Some people will never get through: that experience is completely valid."

This tweet hit home because I've recently been asked to help facilitate some peer support workshops at the local Recovery College. On the face of it, this might seem like a welcome initiative; people with lived experience of mental health difficulties working alongside others who are struggling with their mental health. Surely this has to be a good thing?  

Well. It certainly seems as though a lot of resources are being put into 'front line' mental health services. Up to a point I understand this, in the sense that if you catch people early and help them / give them the tools to help themselves, some of them might avoid having chronic problems or more severe mental health issues later. 

Alongside this, in my experience, secondary mental health services now seem especially keen to discharge people back to their GPs. 

In some areas, people are being referred to their local recovery college instead. I welcome the idea of people accessing mental health support and information within their community, but whether a recovery college is the right place for the most unwell, I remain unconvinced. Certainly being discharged into the hands of ineffectual or inappropriate services under the guise of 'promoting independence' is the ultimate kick in the teeth; a case of 'let's remove vital care and support, all the while telling you we are doing it for your own good, so you don't become dependent.' Not acceptable, surely. 

Meanwhile, a relative told me that his employer, a university, are training 'mental health first aiders' to help people who are struggling with their mental health. At first glance, this might seem like another good idea. Yet it can be little more than a token gesture if they are not willing to change the way they treat their staff. So many people are on short term, insecure contracts. There's a culture of presenteeism, of people working ridiculous hours. All of which contributes to stress and poor mental health. How about making organisational changes to address these issues, rather than training staff to pick up the pieces when people inevitably struggle? No? Thought not....! And is there any additional funding for already overstretched mental health services, where many of these people will inevitably mturn? Or, I'm starting to wonder, is that where the recovery college comes in? 

I feel that as peer support workers, we should resist the 'Survivor' narrative. For those of us fortunate enough to have regained a level of functioning where we are able to facilitate peer support groups, there's a huge temptation to use our own lived experience as an example. However, some people are never going to be 'better.' There will always be people who require ongoing support. What about these people? Where do they fit into the recovery jigsaw?

Some people call the obsession with overcoming our challenges as 'inspiration porn' and cite the example of the Paralympics being used as an inspirational example of what (some) disabled people can achieve. They point out that many disabled people cannot become athletes and cannot 'overcome' their challenges. Does this mean they've failed? Not tried hard enough? What does the survivor narrative offer them? Particularly when we have a spectacularly cruel government in power, who further oppress and victimise the most vulnerable by taking away basic financial support. 

We are, I fear, a long way from levelling the playing field when it comes to disability of any kind. We kid ourselves when we make token gestures and trivial adjustments that we are being inclusive, but that's bullshit. People still can't get around in the built environment, they still can't use public transport reliably or access vital services and hate crimes against disabled people have never been higher in number. 

I wonder whether our obsession with 'surviving' disability is really all about encouraging people to be as UNdisabled as possible, so as to make the abled feel more comfortable? I think that's why I feel so lukewarm about the recovery college, as well as certain methods of peer support. It's erasure of many mad people and disabled people's struggles and could be, if used inappropriately, incredibly toxic. 

Mental health awareness

If you hadn't already noticed, this week is mental health awareness week. Glossy TV ads tell us we shouldn't be ashamed of having a mental health problem, that we should 'speak to someone.' We are told we are 'not alone' and that 'one in four people suffer from mental illness.' 

Well, you know what? We have probably never been more aware of mental health issues, thanks all the same. Those of us who are struggling don’t need to have our awareness raised. In my view, the problem is not lack of awareness, but a lack of suitable and appropriate support. 

Why is it, at a time when we have never been more 'aware' of mental health, that the conversation never seems to move beyond depression and anxiety? I'm not belittling these things at all, they're awful, they blight people's lives and they are rightly getting much needed attention. But what about those of us with other issues? 

You see, when we are told to 'talk to someone,' this assumes that the person who is listening knows what to do with what they've been told. In my experience, this isn't the case at all. My experiences of voice hearing combined with persecutory delusions are simply not palatable to most people. I've got to be honest, most people are freaked out and don't know what to say. For example, I told my husband the other night that my voices were instructing me to set myself on fire because I'm such a terrible person. I mean, what do you say to someone who's just told you that? Fortunately James has plenty of experience of helping me when I'm unwell, so he wasn't too perturbed. 

Most people, however well-intentioned they may be, feel out of their depth when we share our experiences. All this exhorting us to talk, telling us we are not alone and so on feels rather hollow. There's still huge stigma around 'severe and enduring' mental health problems, for example a lot of people still believe that people with psychosis are unpredictable and menacing. (I promise you I'm not!)

Living with schizoaffective disorder isn't easy. The medication I take dials down my symptoms, but it doesn't eradicate them altogether. I still hear voices, still feel paranoid at times and still believe that people can read my thoughts, put thoughts into my head or remove them. Finding a balance between 'reality' and what my brain tells me can be really difficult. Sometimes it'd be useful to reality check my more bizarre thoughts, but I daren't risk sharing them for fear of being seen as a lunatic. 

Awareness campaigns are not in themselves a bad thing; my complaint is really that they don't go far enough. Presently, the conversation starts and ends with the more 'relatable' conditions. There needs to be far greater awareness of less common mental health issues, combined with appropriate support for those who need it. 

More importantly (and this could be the subject of a blog post of its own), we need to challenge our toxic environment, which encourages us to feel unbalanced, distressed and creates a fertile ground for mental health issues to develop. 

A little update for you

Hello again and surprise surprise, it has been months since my last blog post! (That sounds like confession doesn't it?) Once again, I was full of good intentions, but did bugger all about them. I just thought I'd write a bit about what's going on for us at the moment.

Things are going ok. Most importantly, everyone in the family is in decent health. The boys are doing very well kidney wise, with no major concerns. This is especially good news for Joe, who sits his GCSEs in June. (Yes, really. He's nearly 16). Both lads are well, are growing like mad and eating us out of house and home. Normal teenagers, then!

I'm generally ok when it comes to my mental health, I just have to be careful not to do too much too soon. The difficulty I have is working out how much is 'too much.' It's a learning process and sometimes I misjudge it, but I'd rather give things a go and deal with the consequences than not try at all. I recently started doing some peer support with Mind. It's going really well, I enjoy it and I think I'm doing some good, which in turn makes me feel better about myself.

The only fly in the ointment right now is that I'm living with horrible pain from the arthritis in my knees. It's in my hips and neck as well (oh lucky me), but for some reason I can tolerate that pain much better. I feel like I have toothache of the knees, it's that same gnawing, incessant ache. As you might imagine, it's worse when I move about (especially going up and down stairs), but in a particularly cruel twist, it's also awful if I sit still for too long! So I can't really win. Driving is difficult, exercising is a serious challenge and sometimes even just pottering about is agony. Unfortunately for me, my GP doesn't seem to take the situation very seriously at all. They won't prescribe 'proper' painkillers (paracetamol and ibuprofen don't help) and they won't refer me to a specialist because it's 'only' osteoarthritis. I've had x-rays, which have confirmed the problem, I've had physio and I do the exercises whenever I remember, but that's about it. I feel like I'm stuck with it now and I dread getting older and more immobile. I don't want this post to be  a long complaint about my poor knees so I'll change the subject, but if any of you have any good advice or ideas about how to deal with osteoarthritis, please let me know.

As some of you may remember, we rehomed another ex-racing greyhound at the end of last year. As we approach the first anniversary of him coming to live with us in Yorkshire, I'm happy to report that all is well. He's a bit of a dickhead at times if I'm honest, but I love him. He's grumpy with other dogs, has form when it comes to chewing cats and is generally a total pain in the arse. However, he's also funny, loving and beautiful, so we forgive him everything. We named him Kuro (Japanese for 'black') and he's quite a character. He has his own twitter account (@kurothehound) if you enjoy reading about houndy exploits.

I still go to as many gigs as I can. I was at the Brudenell on Tuesday night to see Jesca Hoop and I'm back there again in a couple of weeks to see Elbow do a stripped back show. Then I've got Circus Wolves in November, Slow Readers Club in December and Supergrass in January. I'm hoping to fit a few more in before Christmas if I can.

All told, things are pretty good at the moment. Now if I could just get this knees business sorted out.....!

How to break into the elite

This blog post has been a few days in the making because there were so many areas I wanted to write about. Apologies for its enormous length, I tried to be as brief as I could, but then I kept thinking of something else to write!  

The other night, I watched the excellent BBC documentary 'How to break into the elite.' I can't say I enjoyed it, because I was FURIOUS at the injustices shown, but it was very interesting. I wasn't particularly surprised by anything I saw, but to see how disadvantage plays out in people's lives and how blatant the discrimination (because that's what it is) can be, well that was shocking.

It's 'a truth universally acknowledged' (with apologies to Jane Austen) that there's a certain group of people who monopolise the top jobs in the majority of sectors. What I found depressing about the programme was the fact that the lovely young people featured were all bright and articulate and had already overcome significant disadvantage in getting to university in the first place. Then, upon graduation and with good degrees in the bag, they in theory had everything going for them, but still struggled to get their foot on the first rung of the ladder. In fact some of them weren't even aware of the location of the ladder! 

I thought it was excellent that the programme broached the subjects of the advantages of having the right connections and the importance of 'soft skills' and 'polish' - those qualities which young working class people  supposedly lack. The confidence, affability, the being 'one of us' stuff is so incredibly powerful and it keeps the door firmly closed to people who are not the same. I liked the comment at the end about the fallacy that a posh accent = intelligent (many of our politicians are testaments to this untruth!) 

Personally, I feel very strongly that we ('we' as in people of working class origin) should NOT have to ape the demeanour, values, speech patterns and social graces of the upper middle classes in order to 'get on.' Why can we not succeed on our own terms?! It has made me  furious in the past, when I've been considered 'thick,' just because I speak with a northern accent. 

I thought what Matthew Wright said about having been ousted from certain programmes and replaced by a (relatively privileged) person of colour in the name of diversity was interesting. In selecting instead a privately / Oxbridge educated black or brown person, the media company might be able to blow their diversity trumpet, but the working class voice has been excluded. I suppose that shows the ways in which race / class / gender / (dis)ability etc all intersect. Which could (and probably should!) be the subject of another documentary. 

Another thing that makes me angry is the dismissal of working class folks' achievements. It's a form of erasure and I believe it occurs partly because of my earlier point, because people of working class origin are expected to ape the behaviour and demeanour of the upper middle classes in order to 'get on.' I'd go as far as to say that the skills, abilities and achievements of working class people end up being 'colonised' because in order to make progress in the workplace, the person has to shed their very 'working classness,' so they end up being assimilated into the middle class.

As you may recall, part of my PhD work was around the problems of perceived credibility in doing research when you yourself have a mental health difficulty. Particularly around issues of objectivity / subjectivity. This extended to involving people with mental illness in conducting research (ie not as research participants, but through my attempts to involve others with mental health difficulties as co-researchers of equal standing). I was looking into the way we ('we' being those of us with mental illness) are traditionally seen as being poor and unreliable narrators of our own experiences, with doubt being cast on our capacity as knowers (epistemic injustice).  

Having an interest in this kind of thing led me to consider the relationship between social class and the perceived credibility of the knower. I was initially thinking about it in relation to politics and Boris Johnson and other 'born to rule' types, but it also applies to other areas of life. Specifically in relation to the elites programme, I was thinking that the applicants for the various jobs were seen as less credible and capable, thanks to the way they spoke, dressed and conducted / carried themselves. They were epistemically wronged. 

If you think about the olden days, the rigid class system used to (both formally and informally, I suspect) dictate the way working class people spoke to their 'betters.'  A working class person speaking to a 'gentleman' in too familiar a way would be given extremely short shrift; it was expected that they would demonstrate the appropriate level of deference. Thankfully the days of overt deference are behind us (I think? Though perhaps not when you consider the way we are expected to treat the royal family...) However I'd argue that its legacy lives long and prospers.

I was thinking about the relationship between stereotypes and epistemological power, on the grounds that stereotypes of historically less powerful groups, such as women, black people and working class people invariably involve an association with negative attributes, such as illogicality, lack of intelligence, evolutionary inferiority, lack of ‘breeding,’ lack of moral fibre and so on. Conversely, it's not hard to imagine someone growing up with social prejudices overwhelmingly in their favour. Imagine that they are from an elite family and that their education and entire upbringing are subtly geared to installing the message of superiority. A posh accent and a confident air will help to mark them out as epistemically authoritative. With this, they receive what I'll call a  'credibility bonus.' This will no doubt be advantageous in bringing them lucrative employment and a certain (perceived) automatic high status in social relationships.  

It seems to me that in order to be taken seriously, ie to be considered epistemically authoritative, we (whether we be people of working class origin, women, people from minority ethic groups, gay and trans people, disabled people, people with mental illness, not to mention those who belong to more than one of these disadvantaged groups) are expected to play by the rules set by those in the 'higher status' group. We are expected to 'pass' as one of 'them.' The better we are at passing, the more likely we are to be allowed entry to 'the club.' It's a sad reality therefore, that in order to get on, we must eschew much of what makes us 'us.' People of working class origin who go against the grain and refuse to attempt to 'pass' are probably fairly rare. I'd imagine that many seek success in alternative ways. Someone very close to me is an exception to this as he's an academic who has remained close to his roots, but it might be that promotion to the upper echelons of academia will be hard to come by.

I have definitely, subconsciously, attempted to 'pass' at certain times during my career. Not particularly successfully, I might add! I might have been enthusiastic and hard working, but I was also unpolished. In later life, once I had retrained, I realised I wanted to advance for who I was. I hope that one day, this will still be possible for me.

The class system is very much alive and kicking in this country. The people at the top, whether they be politicians, bosses or whatever, are afforded a credibility they frequently ill deserve, while those of us from working class backgrounds are still seen as having limited authority or credibility, regardless of ability, education and so on. The elites programme demonstrated clearly how class advantages operate at the beginning of a person's career and produced statistics which showed that the pay and status differential persists over time.

It's a sorry state of affairs and puts paid to any notion of meritocracy. 

Knowing myself best

I am seeing my new psychiatrist tomorrow. 
Inspired by this meeting, I've been pondering my mental health situation. I was thinking that in general terms, I've come a long way regarding accepting that I am ill with a chronic and serious mental health problem. I no longer think that every time I relapse, it will be the last time it ever happens, or that once I'm managing ok again, that I'm automatically 'better.'

I realise that with schizoaffective disorder, there may be no such thing as 'better, ' it's more likely to be about management and living as good a life as possible. I think I've finally accepted this. That doesn't mean I don't feel frustrated, even angry sometimes about it, but it does mean I've largely moved away from denial, which sustained me for some time. 

What I haven't done (yet) is successfully worked out my own patterns of relative illness versus wellbeing, or confidently identified what will help or hinder. I usually know whether an event or activity will be useful in the short term (ie is likely to boost my mood), but I haven't yet worked out the effect of doing these things (or not doing them) on the bigger picture of my wider mental health. I should really keep a kind of mood diary, although ideally I'd like one that allowed me to record more than mood alone. There's probably something out there already, maybe an app. I'll look into that.

One thing I would say is that some people in my life are, I feel, very pessimistic about my situation. It's frustrating because they can be real nay-sayers about my ability to 'do stuff.' A good example would be last night's gig. They were being a bit 'I'm not sure whether you should go.' The thing is, it's not unreasonable to ASK ME whether I feel well enough to cope with a gig but telling me they don't think I should go is unhelpful - and not just because I didn't invite opinions! It feels sometimes as though they are trying to further limit my already fairly limited enjoyment of life. I know they're doing it out of care and concern, which I appreciate, but it honestly feels sometimes as though they think I should stay in every night and never go out and enjoy myself, all as a means of 'protecting' my mental health.

My argument against this (for me) far too conservative approach is that me going out and 'doing stuff' is an attempt to reclaim something of myself *for* myself. Without these infrequent yet admittedly potentially illness-inducing joys, I *might* experience better overall mental health. However, my life would be considerably less enjoyable and colourful as a result. Which would, ironically, lead to worsening mental health!

You might be reading this and having a bit of sympathy for the nay-sayers. I wouldn't blame you because I do too. After all they (and I!) want the same thing, for me to be as well as possible. They don't want to see me hospitalised again or seriously unwell and I don't want that for myself either. What I do want to achieve is some balance in my life, so that I can do *some* of the fun stuff and also remain as well as possible.

My care coordinator reminded me that with a condition such as mine, there's some degree of unpredictability about it. Yes lifestyle, stress and so on definitely have an impact, but so does the 'cycle.' Apparently it's not realistic to think about eliminating *all* periods of being unwell, perhaps instead it's about minimising them. On a positive note, it's also not unreasonable to see people whose symptoms are in remission for many months, even years.

All of this stuff is food for thought and prompts me to have a few questions for the doctor tomorrow. On the subject of the over caution about what I do, people are at least showing care and concern for me. It would just be nice if they'd trust my judgement, instead of assuming they know better than I do!

Promoting independence

One of my friends has had an awful experience today with mental health services. She's been discharged after just six weeks and told that despite her ongoing psychotic condition, she can manage on her own, with support from her GP when needed. This seems to be the case in many areas now, with mental health services keen to discharge people under the guise of 'promoting independence' (I'd laugh but it really isn't funny). People are being discharged from services well before they are ready and if they resist, they risk being labelled 'dependent.'

Discharge as 'promoting independence' though, I mean bloody hell, talk about doublespeak! The independence and resilience agenda is potentially so very damaging, I've seen it coming for quite some time and am extremely sceptical about the current buzz word 'resilience.' The word has been so bastardised and stripped of its original meaning that it has begun to mean 'to behave as though life events have no impact.'

All too often, resilience then becomes a stick with which to beat people who are struggling. Depressed? Anxious? You just aren't sufficiently resilient! It’s also used to place blame onto people who are struggling to work under oppressive institutions and practices. The official response to burnout becomes 'this person lacks resilience,' not that they are being expected to work in impossible conditions, meeting impossible demands.

Makes me mad, this stuff. In one sense I long to be free of mental health services because they really do push some crap in our direction. On the other hand, I've (mostly) received good quality care, particularly from my care coordinators and I know that once I've been discharged (perhaps I'll be said to have 'achieved independence?') It will be incredibly difficult to access services again, should I ever need to.

You see, there's another serious problem within mental health services. In my area, to access secondary care, you must seemingly present with psychosis, but not be deemed to have 'complex needs.'  Which means that legions of people with serious (in some cases, life-threatening) mental health problems are left with the lottery of receiving care from primary care, i.e. their GP. My personal experience of GPs has been extremely variable, some have been fantastic when it comes to mental health and others dreadful. In any case, you only ever get a ten minute appointment with even the best GP and the repertoire of help and support they can offer is incredibly narrow. You might get a short course of CBT if you're lucky. Your GP could refer you to secondary services, but if that referral is turned down, you're on your own. This leaves many people without access to specialist mental health support. It's all well and good to tell people 'it's good to talk' and 'It's ok not to be ok,' but if we do reach out, who's listening and what practical support is available?

I'm told that even people within secondary mental health services are being told to 'call the Samaritans' if they are distressed. Let's get this right; people who are acknowledged to be very unwell are being told to contact a voluntary organisation, rather than ask for help from their existing mental health team. I believe this has even been said to people who are in hospital. No disrespect to the Samaritans, I think they do an amazing job; my point is that people are being turned away by their own mental health teams and asked instead to speak to a stranger on the phone.

We are told that more money than ever is being spent on mental health in a bid to achieve parity with physical health. If this is the case, then why are mental health teams becoming increasingly selective about the people they will work with? Why are we being asked to call Samaritans? And why are people still being sent hundreds of miles for a hospital bed? (I was very lucky, I was sent just 25 miles away). I don't have the answers, I just wonder.

I don't know if there's any mileage in treating mental health simply as 'health,' with the body and the mind being interconnected, two parts of the same person. I'm not sure I understand the artificial distinction between mental and physical health. Something for me to learn more about.

Meanwhile, my friend has been left to make her own way in the world. Luckily she has a supportive family who live close by and friends who are mental health savvy, for further support. Many others are less fortunate. Is 'dependence' on services really such a terrible thing?

'Agony Ali'

I've recently picked up a lot of new followers - which might have something to do with the fact that I mentioned Leeds United and it got picked up by the Elland Road Owl! Here's a brief-ish introduction to me, which will save you the trouble of reading my previous blog posts.

"There's a lot I could say about myself in the past, but I'm going to stick to the last five years or so. As you may know, I'm married to James and we have two sons, Joseph who's 15 and Evan, 13. We live in sunny Leeds.

Roughly five years ago, my youngest son had some routine health complications, which resulted in further investigation. After many months of tests involving the whole family, it was confirmed that the two boys and I have a rare genetic disorder known as Alport Syndrome, in which a particular type of collagen is affected. This collagen is found in the kidneys, the ears and the eyes. The collagen prematurely ages, meaning that people with Alport Syndrome become deaf, experience kidney failure (usually developing over several years) and can have eye abnormalities.

Both my boys are severely deaf and they both have kidney disease, which will progress until they both require transplants. It's not possible to 'cure' Alport Syndrome, but the effects on the kidneys can be slowed with medication. I too have Alport Syndrome and therefore kidney disease, but it's typically slower to develop in women. At the moment my hearing is ok.

Learning that my children were affected by this condition and that I too have it had a massive effect on my already variable mental health. I was studying for a PhD at the time, which was stressful enough on its own. I had a psychotic breakdown in 2014 and eventually had to give up the PhD and the counselling career I had recently begun. I was hospitalised several times during 2015/16 and was later diagnosed with schizoaffective disorder (depressive type). This gave me answers to questions I'd had over the years and explained why my mental health had always been so up and down.

Since my lowest point in 2015, I've been slowly rebuilding my life. I began a full time professional doctorate in Counselling Psychology in 2017, but found this and commuting to university too mentally taxing and had to give it up to preserve my mental health. I spent much of 2018 feeling a bit sorry for myself and something of a failure. I've since turned that around and have accepted that I'm not useless, I'm just ill.

Now that I'm recovering, I'm looking to do something again. I've no idea what this 'something' will be, but I'm hoping I can combine my love of writing and helping people with their emotional and mental health difficulties. I'm already qualified and experienced as a counsellor, but the writing side of things will be a new challenge for me.

Maybe I should set myself up online as an Agony Aunt and charge people a small amount for my services? Agony Ali!

Thanks for reading if you got this far - it's been lovely to meet you!

Ali x"

Another phase of life

It's been a loooong time coming but finally, another post in my series of (very) occasional blogs.

I'm happy to say that all's well and life is pretty good. I'm enjoying a period of relative stability in my mental health, my family are well and we have a new family member (about whom more later!)

My psychiatrist tells me that my schizoaffective disorder is currently 'in remission.' That's the medical terminology anyway. My layperson's version is to say I feel well and I'm coping with life (within certain parameters). The parameters are basically that I don't attempt anything that's too ambitious. For example, I tried going to a writing group run by MIND, singing in a choir and taking swimming lessons to improve my technique. Believe it or not, I found three activities a week too much. Not because I was lazy or couldn't be arsed, but because of the mental fatigue they induced. I'm still singing in the choir but I had to let the other activities go, at least for now. I'm not moaning about this, it's just how it was. Hopefully in future I'll be able to add to my repertoire of activities and manage better but I'm only just getting to grips with the fact that just because I can do a thing on one or two occasions, it doesn't mean I can necessarily be relied upon to do that thing all the time. Those of you with chronic physical health problems will no doubt relate to this, but as I say, it has taken a while for me to catch up.

It's hard to accept a slower pace of life when you've always been a busy person, but accept it I must as it's my new reality. I don't know whether I'll ever get back to being the person I once was, but actually I'm not convinced I'd want to. Things are different now and that's ok. That's not to say I don't feel frustrated, constrained or angry sometimes because I do, but when I stop to think about it I realise I'm probably one of the lucky ones.

Moving on, I have good news about the boys. They had a kidney appointment recently and in Joe's case, his protein creatinine ratio (the amount of protein excreted into the urine and a measure of kidney damage) has been brought under control by medication. What this means is that although Joe's kidneys are compromised and that situation will continue to worsen, end stage renal failure is being delayed by some years. Evan will be starting on the same medication soon, with a view to protecting his kidneys for as long as possible. Their deafness has stabilised too, they're both severely deaf but with their hearing aids they manage very well. Long may the present situation continue as Joe's now 15 and his GCSEs aren't too far away. I find it hard to believe that they're both teenagers, when I started writing this blog they were still little boys in primary school! How time flies.

We had some sad news in October with the sudden loss of our beloved greyhound, Barney. Luckily he didn't suffer for long and although the decision to have him put to sleep was one of the most difficult I've ever faced, it was really the only option when he was so poorly. Our home became a sad place for me and I missed him terribly. Some weeks later, a friend sent me a photo of a greyhound who needed a home. He was one of the long stayers in the kennels and had been routinely overlooked because he was big, black and male. (Rescue centres tell us that they really struggle to re-home black dogs, it's a known thing!) It wasn't long before that particular dog found a home, but by this time I was already committed to the idea of rehoming another greyhound.

A few weeks later, I was driving to Birmingham to collect another big, black, male greyhound. He had raced at Perry Barr for a few years and then retired. His name was Brandy. We renamed him Kuro (Japanese for black), did the adoption paperwork and drove him north to his new home. That was three weeks ago and as I write this, he's lying on his back in his bed, belly in the air, chewing a massive squeaky caterpillar. I think we can safely say he's settling in. Ok, he weed on the Christmas tree and sometimes wakes us up by woofing in the middle of the night, but he's part of our family now and that's the deal, you take the rough with the smooth. 

Kuro is very different in character to our sedate old Barney. Barney was a soulful chap, who only ever barked a handful of times in his life.  Kuro is very vocal and tells us when it's meal time, walk time or 'I just want a shout' time. He's playful, funny and wilful. Inquisitive, cheeky and lively. He's certainly keeping me on my toes and encouraging me to walk more! He's a fun dog, an excitable dog and he's ready to accompany me into this next stage of my life, whatever that may bring.

Afternoon tea with Patrick Gale

Nestled on my bookshelf are a couple of novels by an author called Patrick Gale. I read my favourite, Notes from an Exhibition, on holiday a few years ago and was both moved and impressed by it. It's the story of a family, simultaneously ordinary yet extraordinary, deeply affected by the death of artist, mother and human whirlwind, Rachel, who had bipolar disorder. The story moves backwards and forwards in time, revealing aspects of the past through exhibit notes from the artist's posthumous exhibition. It was clear that the author was knowledgeable about mental health issues, but the way the story was written elevated it to being way more than a straightforward tale of adversity. I found the book clever, painful, sweet, fulfilling and gut-wrenchingly real. It covers big topics such as mental illness, love, religion, family, sexuality and hope - but without any of them ever being heavy-handed or overdone. I absolutely loved the book.

My friend Katie and I were therefore delighted to meet with Patrick and Vicky, the person in charge of publicity for his publisher, in a busy cafe in Bloomsbury, having won a Waterstones prize to "meet the author."

Going to London is a big deal for me. I find urban life exciting and enjoyable, yet it can be dangerous. It's easy for me to become overstimulated and overwhelmed by the sheer volume of people, the noise and the bustle. This can lead to an increase in voice hearing and paranoia - unwelcome visitors when I'm trying to enjoy myself!

After a brief pitstop at our hotel, we headed to Gail's Kitchen to meet with Patrick. We spotted him immediately - thankfully, his publicity photos aren't of the 'taken twenty years ago behind a vaselined lens' variety! Vicky introduced herself and Patrick to us and we repaired to a cosy corner for our chat. A tray of amazing cakes soon appeared, along with various cups of tea.

We then spent around an hour and a half in enjoyable and stimulating conversation. Topics ranged from the expected - books and the writing life, to the reasonably obscure, such as illness narratives. Patrick is delightful company. He's clever, witty, funny, thoughtful and has a definite twinkle in his eyes. We each shared a little about ourselves, our domestic lives and our families. I realised immediately that I couldn't be "me" unless I shared something about my mental health - not always an easy thing to do. So I was honest about my difficulties and how they've impacted on my life. I also spoke about my sons' Alport Syndrome, their deafness and kidney issues. I was pleased that Patrick and Vicky showed interest, but that this information was received as part of who I am, rather than being seen as a plea for sympathy. 

We chatted about the talk Patrick would be giving that evening in Chorleywood to discuss his latest book, Take Nothing With You. Later this month, he will be giving a similar talk at Ilkley Literature Festival and we shared our love of Ilkley, including the Lido, of which Katie is particularly fond. Unlike the rest of us, it turned out that Patrick has run up Ilkley Moor and past the Cow and Calf. I didn't realise that Patrick was a runner until he mentioned this and it was interesting to ponder the relationship between running and writing.

We discussed boarding school and the effect of sending often very young children away from home. Patrick explained that his father had been sent away to school aged five and that it'd had a profound effect on him (and presumably, therefore, on his family).

We spoke about Patrick's home and garden in Cornwall (on the second windiest spot in the UK). He mentioned his literary shed, where he leaves books for walkers and passers-by to collect. It has seemingly been a big success, with others also bringing books to deposit at the shed. We discussed the writerly life, being on tour and our mutual love of Barter Books in Alnwick, where you can lose yourself for hours, reading beside the open fires.   

We discovered that like me, Patrick has rescued a retired racing greyhound. We enthused about the beauty, nobility and laziness of greyhounds and their whippet cousins. Patrick's greyhound, Cerce, was apparently rather shut down and in poor condition when she was rescued, but is now a happy, healthy hound, loving her life in Cornwall with her whippet sidekick and human companions.

In a recent Guardian interview, Patrick said that if he wasn't an author, he'd probably be a psychotherapist. As a counsellor, this appealed to me so I asked him how these qualities and his curiosity about people flowed into his writing. Patrick shared a little about the way he allows his characters to 'grow' organically - they each have a life of their own and a back story, much of which never makes it into print, yet allows him to create three dimensional, characters, with real emotional depth.

I mentioned the sociologist Arthur Frank and his approach to understanding personal narratives, especially in relation to illness. Unfortunately I wasn't very good at explaining why he occurred to me in conversation with Patrick! It just popped into my head and I clumsily spoke about it before I'd clarified my point. What Patrick had said about the telling of his character's individual stories reminded me of Arthur Frank's assertion that we tell stories in order to make sense of the events in our lives, as opposed to conventional wisdom that something happens and then we go on to tell others about it.

Patrick, Vicky and Katie all recommended that I read Maggie O'Farrell, in particular I Am, I Am, I Am : Seventeen Brushes With Death and a host of other authors, whose names I have now sadly forgotten!

In characteristic clumsy Ali fashion, I managed to accidentally throw a teapot lid across the floor mid way through our discussions. Thankfully for my pride, nobody mentioned it. I briefly felt like a bit of a numpty, but thankfully nobody drew attention to it!

There were so many other topics I wish we'd had time to discuss, but when Vicky asked if she could take a photo of us all together, this signalled the end of our meeting as Patrick needed to be on his way. Katie and I will be attending Patrick's talk in Ilkley on the 30th September, so we parted company saying we all looked forward to meeting at the Ilkley event. I had a truly wonderful afternoon and only wish we'd had a bit more time!

I'd like to thank Patrick for being so generous with his time, thoughts and enthusiasm, Vicky for being such a gracious host, Katie for inviting me to tag along with her and of course Waterstones for organising the event. 

The Half Life

I've had a day of feeling useless. I'm still grappling with the implications of having a serious mental health problem and of accepting the limitations that this brings.

I think my discomfort lies somewhere in the gap between what I'd like to do and what I'm actually capable of. The thing is you see, I don't always feel unwell. There are times when I feel fairly, dare I say it, "normal." These periods might last a few minutes, a few hours, a day, several days or if I'm really lucky, a few weeks. When I'm having a 'better' spell, I'm tempted to plan extravagant or challenging things for the future - such as having another go at the PhD I've already tried twice to complete but had to abandon due to my fluctuating mental health. When I'm feeling better, my rose-tinted spectacles encourage me to think I'll always feel this well. Unfortunately, that hasn't been the case and after a few weeks or months of attempting something, I've had to grudgingly admit defeat once my symptoms have returned. This has been a difficult pattern for me to come to terms with. Although I say 'pattern,' I haven't yet worked out the ebbs and flows of my condition.

I have to say though, it makes planning and organising things bloody difficult. Committing to social activities like getting together with friends or going to a gig can be tricky. I might feel well when I'm invited and enthusiastically agree to attend, only to be feeling dreadful come the time of the event. Committing to a job would be nigh on impossible for now, because my mental health just isn't reliable enough.

I think I now understand something of how my friends with physical illnesses might feel. Just because they can do something today doesn't mean they can automatically do the same tomorrow. Likewise for me. Cancelling commitments at short notice (even when I'd really love to do the thing in question) has become the norm. It's incredibly frustrating and I'm often caught between what would probably be good for my spirits and what my mind needs.

In a burst of enthusiasm a few months ago, I joined a choir, a writing group and I started going swimming. I had to drop the writing group when I became too unwell to continue with it. I've managed to keep up with choir and I'm not doing too badly with the swimming. I manage to walk Barney at least three days a week and I've had the boys at home for the past six weeks without incident. So it isn't all bad. The challenge for me is to work out at what point I might add to these activities without overloading myself and becoming ill again.

Despite these positive steps, the prospect of having to forego paid work indefinitely due to ill health feels pretty bleak. Similarly, the idea of never being able to complete my studies feels punitive. Voluntary work will probably help, once I'm well enough to make a regular commitment. Although I'm able to write a bit, I'm still unable to sit through a TV programme or read a book. Music is my salvation; my Spotify takes an absolute daily hammering.

I started this post by saying I'd been feeling useless today. I think writing this has helped me to see it's not uselessness, but frustration that I'm feeling. I feel I have no option but to get used to this reduced kind of life I'm living. At least I'm living, though. It's no exaggeration to say that I've been lucky enough to come out the other side of what could have been the end. I'm trying to be thankful and see the positives but on days like today, it isn't always easy.

Barney Boy

Barney is a nine year old greyhound. We rescued him five years ago, once he'd finished his coursing career in Ireland. I remember the day we first met. Barney was led towards us from the kennels, dancing about on the lead with his long, waggy tail whipping the air. A tall, chunky (40kg) brindle boy, with a deep chest, long back and beautiful soulful eyes. For me, it was love at first sight.

He turned out to be the most peaceful, laid back lad who never barks. He walks beautifully on the lead, is cat and other dog friendly and has settled perfectly into life as a much-loved pet. He loves loafing on the sofa, his own luxurious bed, our bed; in fact he'll loaf about pretty much anywhere that offers a bit of comfort. He's quiet, gentle, good with people and has beautiful manners.

It wasn't long after getting Barney that I started to become unwell. This meant spending a lot more time at home. Barney turned out to be the perfect therapy dog. He listens, offers a reassuring muzzle or paw, sits or lies quietly by my side. He forces me to get out into the fresh air every day for his walk. I'd struggle to do this for myself, but for him, somehow I always manage.

Barney is the perfect company for someone who hasn't been well. He has beautifully soft fur on his head, velvety ears and he always appreciates a pat or a stroke. He'll happily have a cuddle and will occasionally chat in his own, houndy way. Sometimes he plays, throwing his stuffed animals into the air or zooming around the room. This never fails to make me laugh.

Barney is getting older now, the fur on his long muzzle becoming grey. He's slowing down, his joints sometimes hurt (Yumove to the rescue!) He's started appreciating shorter walks.

We have been through a lot together, Barney and I. He's been by my side in good times and  bad. I'm sure life will throw up many more adventures for us. So here's to the future, old lad. Thank you for being "my boy."

Schizoaffected

I have a shiny new diagnosis. Schizoaffective Disorder, depressive type. Rather than attempt to define it myself, I'll quote the Royal College of Psychiatrists when they say:

"This is a disorder of the mind that affects your thoughts and emotions, and may affect your actions. You may experience episodes that are combinations of both 'psychotic' symptoms and 'bipolar disorder' symptoms."

In practical terms, this means I have episodes of psychosis, similar to those in schizophrenia, ie muddled thoughts, hallucinations and delusions, along with depressive symptoms.

To help manage the symptoms of psychosis and stabilise my mood, I take anti psychotic medication. To counteract the depression, I take anti depressants. The side effects of these drugs can be hard to live with. I've had to put up with weight gain, increased risk of heart problems, a general 'flattening' of my mood so that I often feel numb and a general cognitive decline - I'm nowhere near as mentally 'quick' as I once was. Is it worth it? At the moment, yes, because unmedicated, I'm at risk of following orders from the voices I hear in my head. These orders are always destructive and dangerous.

Unfortunately, I've had to give up my professional Doctorate in Counselling Psychology (the second PhD I've started but been unable to complete). I'm unable to work at the moment. My ability to be a good parent, wife, friend and so on has been severely affected. In short, I now struggle with many of the things I used to take for granted.

However, I'm still me! I'm trying to find a way to live with my symptoms that gives me and my family a decent quality of life. It's not easy, but I know I'll get there. I'm still wrangling with the reality that this is (probably) a lifelong condition but I'm trying to focus on managing it, so that my episodes are as short and as few and far between as possible.

I don't think of myself as ill, I think of myself as having an unusual kind of brain. In this respect, I depart from my psychiatrist and several of my family and friends. Ok I have a different way of thinking about my difficulties but ultimately, the treatment is exactly the same.

My focus is first to get myself stabilised to achieve a decent quality of life. Then I can work on being able to be a better parent, wife, friend and so on. And finally, once those things have been achieved, I can hopefully look at returning to work.

Apologies to those of you I've neglected during the last couple of years. Things haven't been easy and to make matters worse, I haven't really been able to explain what was going on. I just kept waiting, hoping that I'd get "better." Now that I know exactly what I'm up against, I feel I'm in with a fighting chance of getting myself back on an even keel and really getting back into life.

Finally, if you're reading this and are living with mental health difficulties of your own, please know you have my utmost respect.

Love to you all,

Ali xxxxx ❤️

Three things I've learned about my mental health

1. I used to minimise my problems. 

Nobody wants to be friends with a serial complainer, do they? At least, that's how I felt. The last thing I wanted to be was a party pooper, the kind of person who sucks all the energy out of the room thanks to their complaining. So I stuck on my 'happy face' and made out I was ok. Even when I wasn't. This led to me downplaying my problems and sometimes denying that I was struggling at all.  
One of the things I've finally realised about living with mental health problems is that I'm not responsible for other people's happiness. While there are still going to be social situations where it's ok to say "fine thanks, how are you?' and swiftly move on, it's also ok for me to say "I'm having a tough time with my mental health at the moment," without feeling guilty. I don't have to worry that my honesty might 'bring them down' because I don't have to be happy or entertaining all of the time. It's not my job to make *them* happy and, with people I know and trust, it's ok to be honest. I don't have to go into detail unless appropriate.

The thing with mental health difficulties is that they're largely hidden. People tend not to know you're living with a problem unless you tell them. Most of us are great at 'faking wellness,' to the point that in cases where a person has sadly taken their own life, their loved ones often say they had no idea there was a problem.

I'm not suggesting that being more honest and speaking out is a magical panacea, but for me, it has improved certain relationships. Letting people in has been an important part of that. Which brings me on to point number 2....

2. I didn’t used to accept help.

I used to be ridiculously difficult to help. At no point would I ever directly ask for support. This included from mental health services. Whether this was pride, embarrassment or fear of letting people in, I don't know. All I can say is that for me, suffering in silence was awful. Letting friends and family help and support me has been a useful counterpoint to those times when my mind tried to trick me into believing I had nobody in my corner. Even when I was experiencing psychotic symptoms and trust went out of the window, people were there for me. Some people supported me emotionally, others practically. I now know that leaning on my family and friends has made them feel more useful. Friends have told me that even when all they can offer me is solidarity and hope for the future, they still want to stand by me. Knowing they're out there, wishing me well has really helped.

When it comes to the involvement of mental health services, I've also been difficult to help. I've dodged services when I probably needed them because I was reluctant to take antipsychotic medication. A friend then suggested that I might be sabotaging my own wellbeing by refusing to accept help. This really made me think. I wasn't consciously doing so, but I conceded that my actions could indeed have that effect.

After several false starts, I was assigned a care coordinator, a psychiatric nurse, who was on my wavelength. We started to look at what worked for me, what helped and how I might go about living an enjoyable, fulfilling life even whilst dealing with mental health problems. I'm still in the early stages but I'm hopeful that this pragmatic approach will work well for me. Letting people help has been surprisingly liberating for me as I no longer have to carry the burden of my difficulties alone.

3. I was unnecessarily tough on myself.

I used to think that if I tried harder, worked at it more and battled through it, I could outrun my mental health problems. Other people said they had successfully beaten them with their personal brand of fortitude, so why couldn't I? Lately I've come to realise the blindingly obvious: that I am not them. We don't share the same biology, psychology, history, background or social circumstances. Our difficulties are not our fault. Whether we believe that they're the result of illness or what's happened to us, they *are* and we have to live with the cards we are dealt. Giving ourselves a hard time about not getting 'better' is only ever going to be counterproductive and undermining. So I've learned to go easier on myself and practice a little self compassion and acceptance. Giving up a lifetime of self-criticism isn't easy, but I've found that it's helping.

A happy place

Last time I posted, I wasn't feeling at my best. Happily, I'm now much, much better. As you might remember, I paused my doctorate for a year and took a bit of time out to get myself well again. A few months of rest and self care has made a huge difference; I'm happier, healthier and enjoying life. 

I've joined a choir and a creative writing group and been spending a lot of time with friends and family, including my trusty sidekick, Barney (greyhound, for those of you who don't know!) These things have all done wonders for my mental health and probably my physical health too. 

I'm slowly learning about my limitations, which has been one of the hardest things to get used to. Pre-burnout me used to take on far too much and pile on the pressure. I've learned to my cost that I can't do that any more. I'm hoping that this knowledge will help me find a healthy balance between activity and rest. 

It's unlikely that I'll return to the doctorate. Not because I don't want to, but because on balance it's probably not the right choice for me, health-wise. I've learned that wanting to do something doesn't necessarily make doing that thing realistic. Another tough life lesson, when I used to think that I could achieve pretty much anything I put my mind to.  

Having a mental health problem has taught me a number of things about myself. I won't list them all here as it would make for boring reading, but to me they're important and useful things. There's nothing like coming up against your own capabilities to make you reassess your priorities. At first, I felt angry, frustrated and defeated when I wasn't able to achieve the things I wanted. Now, in place of the anger, frustration and defeat, I feel acceptance. I'm wondering whether a little humility might have shown itself too, because I've recognised that we aren't the sum total of our achievements, that we are valuable for just being. In the past, I'd talk the talk in this respect but that was always whilst 'achieving.' It was a bit like when a beautiful person says that looks don't matter. Now that I'm not achieving (or not in the conventional sense), I've come to really believe it. 

I still have ambitions and hopes, of course. I don't know whether my ambitions will take me anywhere, but I think it's good to have them as things to work towards. In short, life is good and I'm generally happy. I'll hopefully be starting a volunteering role soon, helping to improve the quality of life of older people in my area. 

On the family front, I'm happy to say that things are also going well. The boys are *very* deaf, but their hearing aids do a fantastic job. Their kidneys are holding up pretty well. Joe, being the older of the two, is showing signs of kidney disease but he's on medication to protect them and keep them going for as long as possible. We are hopeful that both the boys will be able to see out their education before the need for transplants. 

All told, I have no complaints. I'm lucky. If you're reading this, I hope that you're well and happy too.  

This week

At the station yesterday, I heard a man's voice coming from behind me, saying my name. I turned round and there was no-one there. I looked up at the tannoy, wondering if that was where the sound had come from. Feeling anxious, I boarded the train and put on my headphones. As the journey progressed, the whispers began. 

"She's on a train now."

"Why didn't she jump instead?"

"Nobody would miss her would they?"

"Fucking useless bitch!" 

I closed my eyes and concentrated on the music. When my mind is playing tricks on me like this, one of the (few) positives is that I can hear things in music which my ears and mind don't generally process. It's a kind of "deep listening" experience. It's also a brilliant distraction from the whisperers. 

This week has been bloody awful. I've been struggling with my mental health; fighting with my brain to win control of my thoughts and feelings. Voice hearing and disorganised thinking can be difficult to live with. I take medication, lots of it, but the symptoms still poke through, particularly in times of stress. I reminded myself to have a rest day and book an appointment with my GP. 

I'm lucky because although my mental health problems have taken a lot from me, they haven't robbed me of my ability to communicate. Writing this kind of thing is really helpful. Sometimes people get in touch and tell me that they're struggling too and it helps me feel like I'm not alone. Okay, my life is nothing like it used to be, but I can function up to a point. I can't work at the moment and my doctorate is on hold but I can cope with everyday tasks like shopping and cooking. These things were completely beyond me not long ago, so I see this as a sign of progress. 

Getting through each day is a challenge right now, but I'm hopeful that things will get easier. My goal is to return to my doctorate in September. I'm not sure whether that'll be possible and sometimes I wonder whether I'll ever work again but I have to keep trying and keep hoping. 

  

 

 

Update on family life

My first blog post of the year, all about the family.

I'm happy to be able to say that the boys are doing well on the Alport Syndrome front. They had their routine appointment with their renal consultant in December and he was happy with their progress. We'd been warned about a possible downturn in kidney function around puberty and given Joe's 14 and Evan 12, that's right about now. So far though, things are looking good. The doctors have increased the dose of Joe's medication to protect his kidneys and there's talk of Evan starting on the same stuff but overall, things are positive. They'll continue to be monitored regularly, in fact Joe's having a kidney ultrasound on Friday to make sure everything is still as it should be. 

Both lads are doing really well at school. Back in September, we were concerned about Evan's transition to high school but I'm delighted to say that it's gone like a dream. The staff have been brilliant about both his deafness and the Aspergers situation and apart from a few minor hiccups in the early days, things have settled down. 

When it comes to being deaf, both lads have their struggles both at school and elsewhere; people (including me) sometimes forget that the boys don't hear so well if you talk to the side or the back of their head, meaning they can't lip read. They use radio aids in the classroom, which really helps, but the background noise and chaos of the school environment still means that they miss things. Attending assemblies is largely a waste of time for the boys because they don't hear anything of what's being said. Group situations where more than one person is speaking can also be difficult. Their hearing aids are fantastic and the boys have regular follow-ups from Audiology and a teacher of the deaf. 

Moving on to me, things have been tough during the past few months. In September, I started a full time Doctorate in Counselling Psychology up at the University of Teesside. The course is excellent and the content fascinating but unfortunately my mental health was just not up to the task of managing the course. Commuting to Teesside didn't help and I was permanently tired. My arthritis flared up, meaning I was in constant pain. All things considered, I made the decision to defer the course to September 2018, a decision which was supported by my course leader. I'm still officially a student, I just don't have to attend classes until September. This gives me roughly  eight months to get myself sorted for starting again. It might take me longer than some people, but I'll get there!  

In other news, in September we finally moved house. We had a difficult six months of will-we, won't-we with the house as practically every legal obstacle was thrown into our path. It was extremely tedious and frustrating, but we got there in the end and are really happy in our new home. We finally have a garden, so I can buy that sun-lounger I've always wanted!

I'll end this post by wishing you all a very happy new year. I look forward to catching up with all your news xxx 

 

Next steps

Something very exciting is going on in my life. After 3+ years of illness and recuperation time, I'm finally well enough to go back to studying. I'm applying to do a PhD in Counselling Psychology. To start this September! (Arrrggghhh!)
Of course I have all the predictable nerves; will I get an interview? If I get that far, will they allow me onto the course? If I make it onto the course, can I cope with the workload? And so on and so on.
It feels like the right thing to do. It's the culmination of my last 10 years in education, training and work. At the moment I'm busy putting my application together, writing my personal statement and scanning loads of documents to prove I meet the entry requirements. 
I'll keep you posted as to how I get on! 

Think yourself happy?

Anyone who knows me will tell you I'm an optimistic person. I tend to look on the bright side. You might think, then, that I'd be a fan of 'the power of positivity.' Not so much. Here are a few thoughts as to why. 

I recently found some paperwork from one of my hospital stays. It was something called the 'Recovery Star.' One arm of the star was optimistically titled "trust and hope." One line in particular stood out. It said : "think happy thoughts!" So there I was, clinically depressed in hospital, exhorting myself to think like a happy person. "Was this really the right approach?" I asked myself. 

You see, to me, "think happy thoughts" is synonymous with the idea that we should be 'battling,' 'fighting' or 'striving to overcome' adversity in health. The same language seems to be used whether that adversity is cancer or depression, to name but two. Yet this kind of thinking isn't applied to all health issues. You don't hear about positive thinking mending a broken leg, do you? 

Encouraging people to 'think themselves happy' implies that we have a choice and suggests we could rise above depression, if only we employed a bit of positive thinking. I am yet to meet a person with depression who would agree with this statement. Surely, if this were true, there would be no such thing as depression in the first place. To imply choice in response to trauma and distress suggests a distinct lack of understanding when it comes to human suffering. 

Telling ourselves to think positively when we feel the absolute opposite actively encourages us to be incongruent. It encourages us to push down the reality of how badly we feel, when doing so is perhaps one of the reasons we feel so terrible in the first place.  

To me, 'think yourself happy' veers dangerously close to 'pull yourself together' territory. It puts the responsibility for wellness (or conversely, illness) in the hands of the very person who's suffering, as though a person's own 'faulty cognitions' are the very reason why they are struggling. Guilt about being unable to think themselves happy is unlikely to help any person in distress. And when we aren't able to harness the power of positive thought, when our distress or trauma is so deep that no amount of positive thinking helps, have we "failed?" Similar to patients who are said to have "lost their battle" with cancer, have people with depression who fail to 'think happy' lost their battle? What hope for them then? 

People hurt. Terrible things happen. To respond from a place of pain is a perfectly legitimate response. Privileging an "I've got over it, so can you" narrative is arguably a way of de-legitimising people's understandable pain and suffering, a way of seeking to erase it from existence. Perhaps this is because we are so uncomfortable with others' pain? 

I'm not for one moment suggesting that sadness is good, that there is nobility in suffering. I'm simply saying that sadness, grief, trauma and despair are all part of the human condition. It's not for others to tell us to 'think ourselves happy' and maybe we could think about giving ourselves a break when we aren't able to manage it. 

Positive psychology has its place and positive thinking can be immensely helpful in times of strife. Sometimes it's all we have to keep us going! My concern is when 'thinking yourself happy' becomes a panacea for all our psychic ills, because a positive spin on life's events doesn't stop shit from happening or fix the underlying problem.  

Family matters

Whilst writing my blog post this morning, it occurred to me that I haven't mentioned the boys in quite a while so here's the latest. 

Things are generally going well. Both boys are now severely deaf and they cope so well with this, thanks to the wonders of technology. Their hearing aids do a fantastic job and at school they use radio aids. They've also developed amazing lip reading skills, so gone are the days when I could get away with whispering to James whilst they're in the room! 

Kidney wise, things are stable. Joe takes medication to protect his kidneys from further damage and this is working well. Yes he has reduced kidney function but the decline is slow and within what's expected for a boy of his age. Evan's kidneys are holding up well, so he doesn't need to take medication as yet. We are now on six monthly check ups with all the specialists involved and they book double appointments for both lads; a lot more manageable than them seeing each specialist separately, every three months.

In other news, we now know that Evan is on the autism spectrum, with Aspergers. This explains a lot as Evan has always been different to the average boy of his age (in lots of good ways!) It took a long time for the doctors to disentangle the deafness and autism stuff, because they are both in play at the same time. Getting a diagnosis has been helpful from the point of view of understanding Evan and helping him to understand himself, but less helpful in terms of support because unfortunately there isn't much available. 

In general, both boys are doing really well. Joe has just chosen his options for year 9 and Evan is about to finish primary school, so will be joining his brother at high school in September. Joe has a brilliant social life through high school, so we are hoping Evan will blossom in a similar way. Evan is still playing the drums and has recently added the trumpet to his musical repertoire.  

We will be moving house any day now, so that's our main focus at the moment. Just a few short weeks now until the school holidays - we can't wait to spend them in a house with a garden!   
 

What went before and where I am now

This is my first blog post this year!
I've been wanting to write for a while, but I found myself with a stubborn case of writer's block. What follows  is a stream of consciousness, rather rough post about how I feel my brain has changed whilst taking anti psychotic medication.

Some of the differences between my meducated brain and its non medicated counterpart are difficult to quantify because they are inner ones, so they don't translate into outward behaviour change. A good example would be the relative suppression and quietness of my imagination and inner mental life on the meds. When I'm well and unmedicated, my imagination leaps about and grabs my attention, intruding into my daily life in surprising ways. I might be sorting out the washing and suddenly my mind will present me with, say, an eloquent and perfectly coherent response to a newspaper article. I might invent a gadget, or solve an imaginary crossword while creating a meal planner for the following week. Doing several tasks at once used to be my forte. That kind of thing simply doesn't happen in my medicated brain because I've got enough on my plate focusing on whatever task is in hand. I can no longer engage in ridiculous flights of fancy or fantasy. It feels as though a chemical limit has been imposed on my mental activity.

My speed of thought is considerably slower on the meds and I'm much less "present." My focus and concentration have been seriously affected, as has my cognition in general. It's no surprise that completing my PhD became an impossibility. 

My personality has significantly altered, too. I mean I'm still recognisable as "me," but I'm much, much quieter. Less light hearted. I struggle to see the humour in things I used to find hilarious. My whole character is muted. I no longer sparkle. I seek company much less often, preferring to be solitary. I struggle with talking to people I don't know well, something that never used to be a problem. I have become a ghost on social media, whereas I used to be chatty and outgoing.  

How much of this is down to the medication and how much springs from being unwell, I don't know. I'm hopeful that it's the former because I'd hate to think that the changes were permanent. I can come off medication, after all. 

Having mental health troubles for the last three years has severely dented my confidence, both as a person and in my abilities. Losing my PhD was a big factor in this, although I have no doubt that leaving it was the right decision at the time. At the moment, I don't have anything in my life to replace it, so now that I'm starting to feel a little better, I'm also feeling directionless and lost. 

I told my psychiatrist about my perceived limitations on thinking and speed of thought and he looked at me as though I was, well, mad. It was as though I should feel grateful for being able to function at all. And from a mental health services perspective, I can see it's "job done" because I'm no longer acutely unwell. Yet true wellness, for me, would mean being able to resume activities similar to those I took for granted in my pre-illness state. 

I wonder whether my wish to recapture my pre-breakdown faculties is a bit of a 'first world problem.' Then I remember that the brain is what makes us who we are. Altering the way my brain works with strong medication has changed who I am. I think that was the right choice while I was acutely unwell, but now I'm starting to feel better, I'm looking forward to a meds free future.