Five Years

As many of you know, in June 2014 I had a psychotic breakdown and became seriously and dangerously ill. I remained very unwell for a further two years, spending time in hospital and under the home treatment team. I was finally diagnosed with schizoaffective disorder, but it took a while to get the symptoms fully under control. The acutely ill period was extremely bleak and once I emerged from it, I found that my life had changed. 

It's the time of year to reflect on what has been and what is coming up, so here are a few of my thoughts on what's changed during the last five years and most importantly, what I've learned. 

We are not what we do for a living. 

Before I became ill, I'd been employed full time, retrained in my chosen career and studied for a PhD. Suddenly all of this was gone and along with it, a part of my identity. If I couldn't work or study, who was I? I began the lengthy task of reconstructing myself. It's a process that's still ongoing and I'll admit it's been a challenge, but one thing that has always struck me has been the reactions of other people when I tell them I don't work. 

Because I 'look well' and am obviously of working age, people tend to assume I'm employed or similar. Just a couple of weeks ago, I was at the doctors for a blood test and the nurse asked me cheerily 'are you back off to work now?' I wish I always had a suitable response up my sleeve for moments like these, but I rarely do, so I spluttered something about not being in work. My immediate reaction is usually to feel guilty when I say this, as though I *should* have a job. People are generally fine about it, it's me who struggles. The funny thing is, my respect for others has never been based on their employment status, it's just that it's taken a long time for me to be able to apply this to myself. Thankfully, I think I'm finally getting there. 

Not everyone will understand, but those who do are worth their weight in gold. 

Not everyone who was with me at the start of my journey is still with me now. The painful reality is that being ill has cost me some relationships. Sometimes this has been because I haven't been well enough to put in the necessary effort and people have drifted away. Occasionally it's been because my behaviour when I was ill has put people off. There are probably other reasons too, but the reality is that my circle is smaller now than it was five years ago. I've realised that's ok. I've learned to accept that people will probably come and go. I'm keen to appreciate the relationships I have, invest in them and enjoy them. 

I may be doing ok, but I'm not 'better.' 

One of the most difficult things I've had to face is that I'll probably never be better. That doesn't mean I won't have good times, but I may never be completely symptom free. Relapse is only ever a few poor nights' sleep or a stressful time away. I have to be really vigilant in order to stay well. I no longer drink, burn the candle at both ends or do too much socially because experience has shown me that these things are likely to make me unwell again. It's made me a bit boring, but the alternative is so unpleasant that it's worth it. Even taking all these precautions, my wellbeing is not guaranteed because of life's tendency to chuck things at us. I just have to take each day as it comes and do my best to enjoy it. 

I've learned to do what I can when I can. 

Because being well isn't guaranteed, I try to make hay while the sun shines. My family life, friendships, volunteering and social life are all important to me, but so is my health. I've learned to say no, had to change my plans and been forced to cancel things at short notice so I don't overstretch myself and become ill again. I don't like messing people around, so I try not to commit until I'm really confident that I can make it. When I'm well, I enjoy everything I used to but I've learned to pace myself better. Pacing myself and building in rest days has been a godsend. 

I can't 100% commit to things in the future. 

I know what it's like to have to plan an event in advance, it's a right old pain in the rear when people don't let you know one way or the other. Unfortunately I've become one of these people! I tend to accept invitations with a 'probably' and an explanation that I'll be there if my health permits. I dislike doing this, but it's only fair. The most difficult thing was giving myself permission to say no to things I'd love to attend, but that I know are too much. It's rubbish having to say no, but it's better than letting someone down at the last minute. 

On a personal level, my inability to commit has wreaked havoc with my career plans. I've recently started voluntary work and it's great. Eventually I'd love to turn what I do into paid work, but I've no idea whether this will ever be possible. Getting a job isn't the difficult part, it's keeping a job that I struggle with. We'll just have to see what happens on this front.

Serious illness has changed me for the better. 

This might sound like a strange thing to say, but it's true. I'm more patient, more compassionate and more empathic as a result of having had the stuffing knocked out of me. Other people's choices don't bother me in the way they used to as I understand we are all doing our best to get by. I'm still me, but I think I'm a nicer, kinder version of me. 

Health nonsense

Well, here I am again writing about my health, but this time it's physical. As some of you know, I've been troubled for a while by a few seemingly fairly minor things. Pain. Pins and needles. Sleep problems. Trouble concentrating. I've taken these issues individually to previous GPs and been..not fobbed off exactly, but not followed up. I've had numerous blood tests done, which revealed nothing interesting, so each time I was reassured and sent on my way. 

I saw my GP again yesterday and this time it was different. To cut a long story short, I'm being referred to a neurologist to investigate possible Multiple Sclerosis. I've had a further set of bloods done, just to make sure I'm not deficient in vitamin B12, as this can apparently mimic the symptoms of MS. For obvious reasons, I'm hoping this is the answer because it's relatively easy to treat. If not, I'll need to have a range of neurological tests and scans in order to see what's what. 

To say I'm shocked is an understatement. I knew there was something not right, but I hadn't reckoned on it being potentially serious. I haven't got my head round it all as yet, I'm still at the 'WTF?' stage. I'll keep you posted. Just wanted to  let you know what's been going on. 

Thanks all, 

Love

Ali x

 

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"