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. 

The way things are

I haven't written a blog post in many months. Much of the time I've lacked all motivation and simply been too unwell to concentrate on writing. That period has, I hope, come to an end. 

I've recently reduced my anti psychotic medication and I can feel my motivation flooding back. This is incredibly welcome. I've always been a busy, active kind of person but during the last two to three years I've been sluggish, lethargic, slow. My brain has been crowded with noise and clamour, my thought processes like glue. I almost forgot what it was like to think about anything other than the day to day. The medication softened the voices and visions but it did so at a heavy cost. Now, slowly, painstakingly, my brain is emerging from the fog, like dinosaur bones spat out of a glacier after several thousand years. 

For the first time in a long time, I feel alive and full of promise. I want to grab hold of this feeling and hold it close, in case it escapes. 

Consider yourselves warned!

Our lives take us down so many pathways; some turn out to be blind alleys, whereas others become wider and grander, tree lined and fruitful. I could have been a counsellor, an insurance broker or an academic; each were possibilities at one time or another. But in the end, writing drew me to its heart. I've always dabbled with the written word, albeit haphazardly; a blog post here and an essay there, perhaps. Despite positive feedback, it never occurred to me that I had a particular talent for it and making a living from my writing seemed about as likely as being accepted by NASA as a would-be astronaut.

A conversation with a friend has changed all that. From now on, I'm going to write. This is me going public with my intent to write a book. It'll almost certainly be non fiction but that's about all I know at the moment. Exciting, yes, but also a little scary.

If you're reading this and thinking "she's delusional," you may possibly be right. But I'll never know unless I try. I know the odds are stacked against me, especially as I know next to nothing about the practicalities, I just write. Quite often, the words write themselves and it's almost a supernatural experience. Nobody has yet been able to explain how this happens, least of all me. I realise that there's a big leap from 'fortysomething failed PhD student and occasional blogger' to 'writer' but we all have to start somewhere. So this is me, starting.

Goodbye to all that

Well folks, my PhD career is officially over. I'm sorry to say that my wobblesome mental health led to me officially withdrawing from my studies this week. I realised I couldn't give my PhD the kind of attention it required because I was too busy looking after myself and trying to get well. Like most things in life, I reckon a PhD is only worth doing if it's done well and sadly, the standard of my academic work was slipping. I wasn't happy about doing substandard work and decided, on reflection, that I'd rather give it another go at a time when I can give my academic work its full attention.

This decision has been several months in the making and has the full backing of my academic supervisors. It's sad in a way as I started out doing so well but as academics are fond of saying, a PhD is a marathon not a sprint and I just couldn't maintain the high standard required once my health got in the way. 

I realise that many people lose a lot more than a PhD opportunity thanks to ill health, but it's been a significant loss for me and I'm, well, I'm gutted. I'm also a bit confused and bewildered about what to do next - my passion is mental health but I'm unsure about my next steps  in this area.  

On the plus side, taking a step back from academia means I can make my own mental health the priority, along with focusing on family life. (And yes, I realise that I sound a bit like a resigning politician here - "I'm stepping down to spend more time with my family!") But it's true, there's plenty going on with my family at the moment - good stuff, mainly - so I won't be short of things to do whilst I'm deciding what to do next.

Hearing voices

Those who don't hear voices might consider the experience frightening, or as evidence of madness. Some people associate it with religious zealotry or even criminality. However, my experience of hearing voices ranges from being ordinary and everyday, to being something of an ordeal.

The author Jeanette Winterson reminds us that in the past, voices were seen as respectable and desired. In her book 'Why be happy when you could be normal?,' she describes voice hearing as a phenomenon experienced by "the visionary, the prophet, the shaman and the wise-woman. And the poet, obviously." Others see voice hearing as a creative and ingenious survival strategy, a meaningful experience to be explored.

Long before I started hearing voices, I heard my own thoughts in audible form. I was shocked as a child when I discovered that not everybody hears their own thoughts. I wonder to this day what it might be like to have a quiet mind, since mine is often chaotic and messy, with thoughts being so simultaneous that I'm assaulted by a cacophony of noise. That's why regular peace and quiet is so important to me.

My experience of voice hearing is different to my audible thoughts. "Voices" sound as though somebody is standing by my side, speaking to me. I know that if I can't see anybody there, the voice is coming from inside my head. I can then choose to ignore the voice or take notice of it if it's telling me something useful! Voice hearing isn't always unpleasant you see; sometimes the voices are helpful, for example, reminding me of important things I need to do or think about. Occasionally my voices are humorous.

I recognise a range of different voices, but every so often an unfamiliar one joins the crowd. I usually hear the voices one at a time, but during periods of extreme stress, I hear multiple voices, sometimes talking between themselves or competing with one another for attention.

Sometimes, the tone of the voices changes from neutral to negative and they become hostile and critical. Occasionally the voices take on a sinister tone, urging me to take action which would be harmful. Music through headphones helps, as does distraction, but in rare cases, when the voices are commanding, I'm at risk of acting upon what they tell me to do. This is when I choose to take medication. The medication quietens things down but it does so at a significant cost. My intellect is dulled. I lose my sparkle, I'm sleepy and I gain weight. Life seems to slow right down; I sleep, eat and move only when necessary. Life simply becomes a long, slow pause and there are times when even breathing becomes a conscious task. Thankfully, for most of the time, the voices and I coexist peacefully and I've managed without the need for medication.

Overall, I don't consider voice hearing and hearing my own thoughts as a blessing, nor do I see it as a curse. It simply is. It's part of who I am; as much a part of me as breathing in and out. 

 

Another absence explained

Once again, I'm starting a blog post with apologies for leaving it so long since I wrote. Once you read why, I think you'll understand.

Back in June, I made two attempts on my own life. I won't go into detail here, except to say I was hearing voices at the time, urging me to take extreme risks with my health. Fortunately on both occasions, I told somebody what I'd done and was persuaded to get medical attention. After the second attempt, I spent three weeks on an acute psychiatric ward. This was a difficult experience for me, for a host of reasons; particularly the lack of privacy, since initially I was being observed every 15 minutes.

Despite the difficulties I had in adjusting to hospital life, it was made more bearable by lovely visits from family and friends, some fantastic staff and some amazing fellow patients. I was well looked after, on the whole.

I'm now on medication but more significantly (for me personally), my weekly psychotherapy sessions have started again, so I can work on those inner demons.

My only wish is that I'd reached out and got help before I got to where I did. I was in such a place where I felt I couldn't talk to anyone about how I was feeling, neither loved ones nor, say, Samaritans. I can only hope that if I ever, ever feel that way again (which I hope I don't, obviously), I'll ask for help. I've spoken before about not being embarrassed to discuss our mental health, so it's time I took my own advice. Don't be shy, speak out.

Best wishes to all, thanks for reading.