GREEN

Have you ever received cryptic messages beamed directly into your mind from an unknown source? That's what's been going on for me this week.

I started receiving messages that I can only describe as "green" because they were totally beyond language. I realise this will sound totally bizarre to you, but it was like the messages were being transmitted like a television programme, but I was the only person on the right frequency to receive them. They were made up of symbols and sounds which, try as I might, I was unable to recognise.

Green was very, very odd. I called it green because I felt a sense of peacefulness and relaxation when the messages arrived. I felt compelled to understand the messages, but was completely unable to decode them. I knew this was a shame because I had a sense that they were very important. I needed to keep listening, watching and trying to understand, but it was difficult because the messages were beyond human language.

Earlier in the week, I began thinking that other people could read my thoughts. I began to believe that I was transparent, that my every thought and belief was visible. Then I started thinking that someone or something was putting thoughts into my head without my permission. Some thoughts were inserted and others were removed, leaving me feeling very confused about which ones were truly 'mine.'

I started having extremely detailed thoughts about disappearing. Without having consciously considered it, I now had an extremely detailed (and potentially workable) plan. I then began to believe that the 'running away' thoughts were one of the things put there by someone else, so it all felt very strange, as though my mind was fighting itself.  

I felt otherwise completely well, with no depressive symptoms, so I didn't believe it when my care coordinator told me these thoughts were as a result of my illness, that I was actually having a psychotic episode.

A few days since then, after plenty of rest and minimal stress, I can see that yes, these thoughts were a bit odd. My mind somehow created 'green,' as well as the other thoughts that I believed were somehow being beamed in from outside. Which, when I think about it, is a pretty amazing thing for my mind to do. What a shame it doesn't do useful things, like helping me learn another language, or giving me this week's lottery numbers.

I'm now recovering and taking it easy. Trying to avoid stress, including online stress. I'm avoiding the news and, as much as possible, all political discussion. I've temporarily muted things like Brexit, so my timeline is once again full of people and things I enjoy.

Wishing you all a lovely weekend.

Ali x

Psychosis and me

Inspired by the TV programme 'Psychosis and me,' I've been thinking about my own mental health. As someone who lives with psychosis, I want to share some of my experiences, mostly so that I can better understand myself, but if it helps anyone else too, then that would be wonderful.

I suppose the first thing I want to say is that with the benefit of hindsight, I've probably had what you might call 'symptoms' for much of my life. I first started hearing things that other people didn't as a child. I regularly heard my own thoughts as I was thinking them. I believed that everybody else had the same experience, so it was a shock when I learned that this wasn't the case. Sometimes I also heard other voices. Only occasionally, but it didn't particularly upset or concern me because it wasn't hugely different from hearing my own thoughts. That and because the voices weren't saying anything that worried me. Sometimes I heard my teachers' voices, those of my parents and sometimes complete strangers.

Fast forward to age 18 when I was at university and away from home for the first time. Seemingly out of the blue, I started believing that I was soon going to die. This thinking completely permeated my everyday life and I became obsessed with the idea that I would not reach my 19th birthday. In my mind, this wasn't debatable, it was reality and my death was imminent. Soon, the voices began to repeat the kind of anxieties I had around dying.

All this started around March and as my birthday is at the end of May, I had about two months in which to live. I was terrified. Understandably, this led to anxiety and I began having heart palpitations and chest pain. Not unreasonably, this fed into my fear that my time was almost up. I was so utterly convinced that my death was imminent that I made a will. The voices continued.

I didn't share this with anyone else, not even my closest friends or family. Looking back, I can now see that I'd been under immense stress, with leaving home, planning a trip to Germany as part of my course (my first trip abroad), constant money worries and concerns about my future as I wasn't enjoying my course. I vaguely considered visiting a university counsellor, but I talked myself out of it on the grounds that counselling was for people with 'real problems.' This is a recurring theme throughout my younger life, not believing that my problems were serious enough to warrant attention.

As my birthday approached, not to mention exams, I became increasingly fearful and stressed. I explained away my erratic behaviour to others as exam stress, but luckily for me, contact with my family was fairly limited and my closest friend had already finished her course and gone home for the summer, so there was really nobody to tell.

I've always been a very private person, some might even say secretive. I've always 'kept it all in' as I don't like to be discussed, worried about or in actual fact to receive sympathy. It's only in fairly recent years that I've felt more comfortable sharing private things about myself and my inner world.

Anyway, back to being aged 18 and worried sick that I was going to die. I stopped eating through anxiety. I lost a lot of weight and my nails were practically non existent. I started nervously picking at my scalp and it was soon full of open sores. As my birthday approached, I went to sleep every night believing it could be my last. Eventually my birthday arrived and to my absolute amazement, I was still alive. Far from this being a cause to celebrate, I was completely exhausted. Gradually, having passed my birthday, I began to challenge the certainty that I was soon going to die. I reckoned that if I hadn't died by weekend, the chances were I'd still be alive by the following weekend. Over a period of weeks, this worked and eventually my beliefs about death began to subside.

My early to mid twenties are something of a blur to me now. I remember lots of alcohol, some drugs, unsuitable relationships and a great many relocations and house moves. Not exactly conducive to good mental health. I have to confess that I don't have a lot of memories of this time in my life. I know that I was often profoundly unhappy, but I also had periods of elation and great energy. During these times, I was extraordinarily productive and effective. Then I would go into hibernation for a few months, as though recovering from my active stage. I was first treated for depression aged 21 and was prescribed medication for the first time. I took it for a while, it helped and I slowly began to feel better. Then I moved house, changed doctors and never refilled my prescription. I was not to seek help again for my mental health for many years. 

In 1999, I met my husband, James. The next few years were a period of relatively good mental health. We were planning a wedding and a long honeymoon (we were quitting our jobs and doing a round the world trip). We had a lovely wedding and the planning was relatively stress free. We left the UK for 9 months of travelling and I felt happy and surprisingly free of stress. With the benefit of hindsight, I can now see that stress and lack of sleep are both major contributors to poor mental health for me.

We returned home in May 2003 with a baby on the way, no money and no jobs. It wasn't easy, but we both found temporary jobs. I also started a part time degree in psychology at Leeds University. Joseph was born just before Christmas, December 2003. His was a long and difficult arrival into the world and I felt completely spaced out for days after he was born. I assumed this was thanks to the drugs I'd been given, but the feeling of unreality continued. As did, unsurprisingly with a new baby, lack of sleep. I began to hallucinate. I was seeing horrific images of babies and children being harmed and killed. The hallucinations were extremely strong, they appeared right in front of me and seemed completely real. Once again, I kept all this to myself as I feared Joseph would be taken away from me if I spoke out about it. I began to believe that I was seeing these things as a warning - that as long as I received the messages, my child would come to no harm in real life. I found this comforting and it allowed me to cope with the terrible and frightening images. Gradually they began to fade, but looking back, I was far from well. As a new Mum I also experienced depression, lack of motivation, feelings of anxiety about my competence as a parent and suicidal thoughts. I didn't ask for help because I didn't believe my symptoms were 'bad enough.' Somehow I managed the demands of a part time degree alongside new motherhood. To this day I don't know how I managed it, but I did. 

After moving house, I soon found I was pregnant again. The pregnancy was relatively straightforward, as was the birth, but not long after Evan was born in December 2005, I began to feel paranoid. I became obsessed with the idea that I was 'on show,' that people could reach into my mind and see my thoughts. I believed that we were being watched. I talked James into putting up thick curtains to act as a shield from prying eyes. I spent a lot of time worrying about being seen and often felt invisible, or see through. I struggled alone with these problems and once again didn't seek any help.

In August 2005, we moved house again. One of the primary reasons for our move was my discomfort and difficulty in living in a house where I felt so visible. The layout of the new house afforded greater privacy, which was one of my 'must haves.' During this period, I volunteered and then worked part time for a charity. I was still studying part time and had two small children. Despite all this, my mental health remained somewhat stable for a while.

Then I started worrying about my marriage. I don't know what sparked off these concerns. Maybe it was the strain of having a young family and little money. I had no evidence for this, but I became convinced that James no longer loved me. I couldn't put my finger on the exact nature of the problem, things just felt 'wrong' between us. I tried talking to James about it, but understandably he didn't know what the problem was because as far as he was concerned, his feelings hadn't changed. The voices told me that my suspicions were correct and that my marriage was in serious trouble. It wasn't a happy time for either of us. Looking back, I know that my mental health situation made a huge contribution to both of our feelings of unhappiness and my paranoia that things were 'going wrong.' The voices continued and I felt persecuted. Somehow I completed my exams and dissertation at the end of my degree. Nevertheless, I felt very unwell. I wasn't depressed, but my problems caused low mood. I considered getting medical help but realised I didn't know what to say.

I struggled through the next few years. I had periods of feeling relatively ok though, so I worked extremely hard during those periods, which allowed me to ease off when things were more difficult. I graduated with a good degree, I'd already begun training as a counsellor and I did some part time work around the children's school day. Still I felt paranoid and simultaneously highly visible yet somehow invisible. The voices appeared, on and off. Sometimes they would trouble me and sometimes they would be neutral and just comment on what I was doing.

In 2012, a routine health problem for Evan led to investigations that would ultimately lead to the boys' diagnosis of Alport Syndrome. By this time I had begun a full time, funded PhD at Leeds University. Doing a PhD was the culmination of many years of academic work, my counselling training and experience in family support. Professionally, I was absolutely in my element. I passed my transfer at the end of year 1 with no corrections and was delighted. Meanwhile, the health investigations continued and my stress levels began to rise. At the same time, the demands of my PhD and life in academia became greater. In March 2013, Joseph had a biopsy and Alport Syndrome was confirmed. At the same time, I was starting teaching at the university and my research study was about to go live. I felt under immense pressure. My mood was low and the voices had begun to speak negatively about me. The voices continued to torment me and the pressure of my PhD was relentless. I saw my GP and took time away from my research, the official reason being 'stress.'

I have no clear recollection of the next few weeks and months. They passed in a haze of depression, voice hearing, vivid hallucinations and intense suicidal feelings. I was having a breakdown. I found myself in front of a psychiatrist. She was kind, she listened and then prescribed anti psychotic medication, anti depressants and medication for anxiety. She agreed to write a report for university, to request a longer period of suspension of my studies. This was granted. Unfortunately I never returned.

The next year was difficult. I fought an often losing battle to remain mentally stable. That Christmas we went away, but I spent most of the week in one room because it was the only place where I felt safe. I spent two weeks in hospital in the January and then went home to continue on the path to a recovery of sorts.

Months passed. The following summer, I began hearing voices telling me to take all my medication at once. I was filled with the conviction that this was the right thing to do. I was busy taking an overdose when James walked in. He asked me what I was doing and apparently I spoke calmly, telling him that I needed to take all my tablets in order to 'get well.' Immediately he took me to A&E, where I was checked out physically and eventually seen by a psychiatrist. They recommended I be seen by a team who could look after me at home.

A few weeks later, the voices began chanting and insulting me. They told me that the only way to be free of the voices was to die. They instructed me once again to take an overdose, which I did. Once again I ended up in A&E, this time being made to drink activated charcoal mixture and once again waiting to see the psychiatrist. I answered questions and in my mind I was totally lucid, but evidently this wasn't the case. The psychiatrist told me there were no hospital beds in my area, so I was discharged home under the home treatment team. I had daily visits from the team, who quickly concluded that I really needed to be in hospital. There were no beds in my area, so the search was on to find me a bed anywhere. Birmingham was mentioned. Eventually, a bed was found in a hospital around an hour's drive from home and I agreed to be admitted.

Later that day, we drove to the hospital. I remember an endless succession of doctors and nurses asking me questions. I was on 15 minute observations, so every 15 mins a member of staff would come and see me. Including through the night. There was very little privacy. I don't remember much about my stay in hospital, other than to say I met some lovely fellow patients. I was an in patient for three weeks, discharged at my request (too early, in retrospect) just in time for my husband's 40th birthday celebrations. The weekend was a big success, apparently. I remember very little of it as I struggled to be around people and spent much of the time alone in my room.

I had left hospital with a diagnosis of Bipolar Disorder, type 2 and another tweak to my medication. This time I was on the maximum permissible dose of antipsychotic. Back home, along with my care coordinator, I made plans first for my days and then for my weeks. Every day I forced myself to go out (even when I didn't want to), forced myself to have some interaction with other people and to do some household tasks. It was hell. The voices made living a 'normal' Iife almost impossible, but gradually, over time, they receded into the background, my delusions melted away and I felt more able to live my life.

This has been the pattern for the last five years. I am stabilised, feel relatively well and can function (at least up to a point) and then I hit a bump in the road. One of these 'bumps' was when I began to believe that I was a host to parasitic worms, which were living in my stomach. I wanted to borrow James' drill so that I could drill into my body and get them out. Another spell in hospital followed, then being under the home treatment team. Then, after a while, my symptoms eased off and I felt more able to live.

Sometimes my periods of relative wellness last for months and I try to get back to living a 'normal' life. In 2017, I started a doctorate course at a university an hour and a half away. I enjoyed the studying immensely, but travelling and being away from home was incredibly stressful and began making me unwell again, so I had to withdraw. 2018 was another year of ups and downs. I veered between paranoia, delusions and voices and relative stability. Stability for me does not mean that I'm symptom free, but that I can manage despite them.

I now live while managing my mental health. It doesn't rule my life, but it does affect the quality of it and to deny that would be ridiculous. The last five years has been an immense learning experience for me. I now accept that I have, in the words of my care coordinator, a 'severe and enduring' mental health problem. My diagnosis was eventually changed to that of schizoaffective disorder because the pattern of psychosis both with and without mood problems seemed to fit.

I take anti psychotic medication, anti depressants and medication for anxiety. Most of the time, my voices are in the background and I find I can screen them out. Occasionally I am troubled by delusions - there's a recurrent theme of being transparent, people being able to read my thoughts (and steal them out of my head). This in turn creates paranoia and anxiety. I have developed ways of managing these thoughts and beliefs. Sometimes these techniques work and sometimes they don't. Some days, I can barely function. Other days, most people would never guess that I'm ill.

I now recognise that it takes periods of stress for my symptoms to become exaggerated and too difficult to live with. I'll probably never be 'well' in the sense of being symptom free, but that doesn't mean I have to give up on life altogether. My goal is to live as well as I can. On days when my mood is low, I can feel as though I've failed in most areas of my life. This isn't true, of course. What happened is simply that I became unwell and had to make a change of direction. I'm still learning.

I can't finish this piece on an artificially high note. I'm still unwell. I still can't work or study. Sometimes I can just about manage day to day life, whereas at other times I can't. The important thing is that I'm still here, doing the best I can. I'm fortunate because I have a supportive husband, fairly understanding teenage children and a wider network of family and friends who support me. I don't have any particular words of wisdom for others with mental health difficulties, but I would express my solidarity, because it's not easy.

Go well, my friends.

 

New year, new words

Hello! 

And a very happy new year to you. Time for another not-so-frequent update from me.

As some of you know, I've been working in mental health support since the summer. There's no doubt that it's challenging work, but it's also enjoyable and hugely rewarding. Having a serious mental health condition myself, I have to be careful to look after my own health at the same time as looking after other people's. It's not always easy to find a balance, but I'm getting there. 

We had the usual double celebrations just before Christmas, with Joe's 18th and Evan's 16th birthdays. Both lads are well and both have exams this summer. Joe's hoping to go to university in September, while Evan will be staying into sixth form to do his A levels. The boys have recently transferred from children's to adult renal care, so they are seen by a different team at a different hospital. Things are fairly steady on the kidney front. Joe's kidney function is declining, as expected in Alport Syndrome, but we don't yet know how far away he is from needing a transplant. He continues to live a good life (with one or two sensible dietary restrictions). He's incredibly fit, goes to the boxing gym three nights a week and does a lot of fitness stuff at home too. He also runs 5K every night. The doctors are supportive of this and have told him to keep it up. 

Evan's kidneys are still in pretty good shape. It seems that the exact genetic mutation he has is less severe than his brother's. Ultimately the progression of the disease will be the same, but he's likely to be transplanted at an older age than Joe. In the meantime he enjoys playing the drums, watching films and takes an interest in watching UFC (mixed martial arts, for those not in the know!) Thankfully he has no plans to take it up as a hobby - having one child taking part in combat sports is quite enough! 

As for me, well I'm doing ok. My mental health is up and down a lot, I'm actually off sick from work at the moment as a result. Thankfully my employer has been very supportive. I'm just keeping busy and looking after myself as best I can. I've recently entered a mental health writing competition and if I'm selected (a VERY big if), an established author will work with me to tell my story. Like I say, it's a big if, but I enjoyed putting my submission piece together. 

Last summer I lost somebody who was very dear to me. My lovely cousin Chris sadly took his own life in June, which was a huge shock. He was like an extra big brother to me and understandably the loss has made me reflect on the importance of having good mental health support. My own experience of mental health services is extremely patchy and not everyone has the support of family and friends. We can't all rely on voluntary services, either. Mental health care needs something of a revolution, in my opinion. The last two years of pandemic life have taken their toll on all of us in different ways and it's my firm belief that we desperately need to get to grips with emotional and mental wellbeing. 

I'll leave it there, but thanks for reading these words. I'll try to write more frequently this year! 

 

New Beginnings

Hello folks,

Time for another quick update for you! 

Things have been pretty steady this year, with just maintenance appointments for the boys to do with their kidneys, ears and eyes.  

We have a big meeting on Wednesday at St James' hospital. The boys are soon going to transition from children's to adult renal care. I'm sorry that we will be saying goodbye to the lovely Dr Finlay, but now that Joe's almost 18, he has to move to adult care and it makes sense for Evan to move over at the same time. Adult renal is at a different hospital to the children's service and we don't really want to be having appointments at both. 

The other big change is that because the boys are the patients, the doctors won't automatically speak to me and James any more. As the boys have got older, Dr Finlay has been very good at speaking to them directly about their care, but up to now we have always been in the room. This will change when they move up to adult renal. I feel that this is the biggest change because neither of the boys are especially forthcoming when it comes to telling us things! Even important things. So I am a bit nervous about no longer being in the loop in the same way. Although I expect the boys will have to learn to communicate more about their health because we will be involved in helping them with matters such as diet and, eventually, dialysis and transplants. So Wednesday is a big day as we get to meet the people who will be caring for our boys. They have their final meetings with Dr Finlay this year and then from that point onwards, it will be new doctors and a different hospital to visit. 

In other news, as we are slowly moving out of lockdown, I'm looking for a new job. You may remember that I was offered a job early in the new year. Sadly it fell through and I never even got started. However, I have an interview on Monday for a job I really want. So fingers crossed for me at 10am please! 

How things are going

I thought since I'm laid up with the lurgy, I might as well use the time to write.  

A mixed picture is how I'd describe things right now and I'd imagine that's the same for most of us. On a positive note, my mental health has improved beyond all recognition. I can't attribute this to anything in particular that I've done or not done, it seems that it just is. I'm not complaining! I'm trying to make hay while the sun shines and I start work in peer support at the beginning of November. Part time, hours to suit. I'm looking forward to getting started. 

I find the whole thing of living with a serious mental health problem quite bizarre. There are times when I'm really unwell and yes, disabled, by my condition. Yet at other times I find myself able to live a more 'regular' life, which includes doing more of the things I enjoy. It's just typical that my recovery has taken place at the same time as a global pandemic, meaning there are no gigs to go to, no plays to see and no live sport. Hopefully by the time things get back to something approaching normal, I'll be able to take advantage of feeling so much better. 

Having had the opportunity to reflect on 'the illness times,' I can see that things were beginning to slip much earlier than I originally thought. I only wish I'd had the ability then to see how unwell I was becoming. It could have made a huge difference to those years of struggling. Yet somehow, having those difficult years has taught me a lot about myself, my own mental health and a lot about other people too. I wouldn't go so far as to say it's been positive, but it hasn't all been doom and gloom either. I've learned a lot and had a number of life changing experiences, which I think have helped shape me for the better. 

In other news, the boys had a kidney appointment last week. Things are starting to move along in terms of Joe's kidney disease and as such, his treatment has been altered slightly. I can't go into detail here because Joe's asked me not to. At 16 he knows what he wants and having his medical details broadcast on his Mum's blog is not it! Suffice to say, it's been a stark reminder that we are living with a lot of uncertainty in our lives.  

Evan is doing really well, there's not a great deal to report. It's just a case of monitoring him and making sure he lives a generally healthy lifestyle. It's interesting that the boys have the exact same condition, but the specific genetic 'spelling mistake' is unique to each of them, meaning the disease progresses at different rates. 

It won't be long before the boys will be saying goodbye to Dr Finlay and the paediatric renal team at Leeds General Infirmary. They'll be moving over into adult renal services, who are based at St James' hospital. The transition will be gradual, with lots of opportunities for them to ask questions and meet their new doctors. 

As some of you know already, Joe's mad about boxing. In his free time he does a lot of weight training and gym work. He can't fight at the moment thanks to Covid restrictions, but he's looking forward to having his brace removed in January and being able to spar again. I have mixed feelings about this. I think it's great that he's into fitness and keeping himself healthy. I'm less enthusiastic about the idea of him being punched in the face. Or indeed, him punching anyone else! Having said that, the boxing training has turned a very single minded young man into one who is also extremely well disciplined. I have had to get over my squeamishness about the punching thing because he's so determined to give it a go. I hope he continues to enjoy his boxing because it's genuinely the thing that brings him the most enjoyment in life. 

Meanwhile, I realised the other day that the lads will be sitting their A levels and GCSEs at the same time. So that looks like being a stress free summer...! 

That's about all for now. Thanks for reading if you got this far! 

Summer musings

What a strange few months it's been for all of us. Following recommendations from their kidney consultant, the boys have been shielding since schools were closed at the end of March. It's been really tough for my eldest. At 16 he's more independent and wanting to get out and about under his own steam. His GCSE exams were cancelled this summer and his social life has been a complete non event. Not what you want when you're 16. 

None of this has remotely bothered my youngest. By his own admission he's a happy homebody who finds social interaction stressful. No school for several months is something of a dream come true! He's done online school work, but he's loved having a lie in every morning. It'll be a shock to return to real life school in September...

I've read about how people with mental health difficulties have struggled during the lockdown. I must be an exception because generally speaking, I've been ok. That's not to say I haven't had my wobbly moments, but I wouldn't say it's been any more than I'd have had under ordinary circumstances. 

One area where I've really struggled though is sleep. This is important for me because ongoing poor sleep often leads to a mental health relapse. I fall asleep ok, but then I'm awake just two or three hours later. And when I say awake, I mean wide awake and ready to get up. Which is pretty inconvenient when it's 2 or 3am. Obviously, the next day I'm absolutely knackered. My psychiatrist referred me to an online 'sleep hygiene' workshop (yuck, I absolutely hate that term!) It was a couple of hours of them stating the obvious and suggesting I do what I already do, so it wasn't exactly helpful. I was given the grand total of 3 Zopiclone tablets last time I asked for chemical help and they don't work particularly well for me anyway. So yes, sleep is an ongoing battle, but apart from that I think I'm doing ok. 

The boys are generally well. They haven't had a kidney appointment since January so we don't know how they are fareing on the renal front, but their hearing is holding up ok. They are soon to be getting fancy new hearing aids as well, so that's good. 

Kuro had the grand total of 25 teeth out at the vets last week. Poor lad, he's been through quite a lot in the two years since we adopted him. He's doing ok though, he's eating fine and doesn't seem to mind being a toothless wonder. 

I lost two friends during the past few weeks. One was an ostensibly extremely fit and healthy 50 year old woman, the kind of person who runs marathons and jogs up mountains! So learning that she had died suddenly was a massive shock. Her name was Roxanne. 

My other friend, whose name was Tom, had been ill for some time with glioblastoma, a rare but deadly kind of cancer that affects the brain and spinal cord. Tom was married to a very dear friend of mine and although we knew he was terminally ill, his death at the age of 30 was still a shock to the system. Thankfully I haven't attended the funerals of many young people, so it was an extremely sobering experience. It may sound trite, but I'd say if you love someone, let them know because none of us are guaranteed a tomorrow. 

That's a very sober note on which to leave you, but I suppose my friends' deaths have made me appreciate people all the more.  

Love to you all and I'll see you soon x

 

Lockdown blues

I'm writing this in the middle of the second week of lockdown thanks to the Coronavirus. As of this week, my family and I (and don't I just sound like the queen there?) Are at home, restricted to just walking the dog a couple of times a day. We are more restricted than most because my sons have kidney disease thanks to Alport Syndrome. Their consultant wrote to us, advising a minimum of 12 weeks shielding.

The first few days weren't too bad really. Being at home together gave us a slight sense of being on holiday. There's been no school for the boys for a couple of weeks now, albeit they have online learning to do. GCSEs have been cancelled for this summer, so the set revision feels a bit pointless.

It started to feel strange after week one. We've now had two weekends of not going anywhere and not seeing anybody, which is very much out of the ordinary. We've almost run out of things to say to one another, because none of us have been anywhere. It's surprised me how much of our conversation revolves around our activities outside of the house. James is still working from home, so five days a week he's downstairs in the office. The Xbox and PlayStation are also downstairs, which means the boys can't play on them during the day. This is probably a good thing, given the ongoing parental quest to reduce screen time. 

Teenagers tend not to want to hang out with their parents and my boys are no exception. They seem to appear at meal times and then vanish again. They boot me out of the living room every so often so they can watch something they want on the big TV, or I bump into them during one of their many kitchen raids. Communication is usually perfunctory. They haven't seen their friends in person for a few weeks now, but they are enjoying chatting to them online and playing online games in the evening. My eldest lad said to me the other day 'I bet you're glad there wasn't a pandemic in the 80s before you had the internet.' Perish the thought...

I'm not generally the kind of person who feels bored. I can usually find a way to amuse myself and my love of listening to music keeps me going when nothing else will help. This week though, I've felt an oppressive sense of time moving at glacial speed. At times I've felt restless, unmotivated and generally in a slump. I've been bored, but couldn't be bothered finding anything to do. There were a million things I *could* do, if only I could be arsed. I couldn't find it in me to be arsed, though. 

When you live with a mental health problem, it doesn't give you time off just because there's a global pandemic. As annoying as it is and as much as I wish it wasn't so, I'm still a mental. So when I can't be bothered to do the garden, or making a meal feels like it's just too much, I never know whether that feeling is down to simple lockdown inertia or whether I'm starting to become depressed. Same with the ever present anxiety that's in the air. Surely it's reasonable to feel anxious at the moment though? 

I'm still getting up early, getting dressed and putting on a bit of make up every day. Not because I'm going anywhere, but to give myself a sense of normality. I feel a strange sense that I no longer exist. Almost as though I only exist when I'm out and about and that when I'm hidden away, I'm nothing. It's an odd feeling. Like everyone else, I've no idea what the next few weeks has in store for me. I'm hopeful that we can avoid becoming ill and that we don't lose our minds during lockdown. 

Sending you all my best wishes and good luck for the next few weeks. I look forward to catching up with you soon. 

A crisis averted

Well blinkin' heck, time for another blog post. I don't wish to alarm you, but during the last few weeks, I've been lucky to survive an extreme reaction to some new medication. I spent two weeks being passed between my GP, the crisis team, the community mental health team (CMHT) and 111. Nobody seemed to know what to do with me and I fell through the cracks. I was left completely unsupported by the professionals, despite being a CMHT patient. 

It seems the confusion came about because I no longer have a care coordinator. I was discharged last year because I'd been doing so well. I discovered that there is no quick mechanism for unwell patients to return to CMHT care once they've been discharged. This seems like a dangerous oversight. Surely, people like me with 'severe and enduring' mental health problems need support if they happen to relapse? 

Now that I'm feeling better, I'm going to write to the CMHT and give them some feedback about the lack of care I received. It's been a sorry saga of no call backs, passing the buck, misinformation and general negligence. My GP was equally unhelpful. It would have been so easy for me to have become another statistic, for my name to be added to the list of catastrophic failures by mental health services. Every time someone slips through the net and sadly dies, the NHS trusts involved talk about 'lessons learned' and changes made. I saw no evidence of this. 

In other news, my boys had their regular appointment with their kidney consultant recently. Unfortunately, things are starting to progress with Joe's kidney disease. He's been given more medication to manage this, with the prospect of starting further medication at his next appointment. Evan will also soon be started on an ACE inhibitor to protect his kidneys. I'm happy to report that both the boys are well in themselves. Joe's GCSEs are coming up in a few weeks, so it's good to know that his kidney problems aren't causing him to feel poorly.

I've mentioned previously on Twitter that I've got a meeting with school and the teacher of the deaf to discuss provision for Evan. It's about making sure that the combination of Evan's deafness and autism isn't getting in the way of his learning. Right now he's not doing himself justice at school and his teachers have asked us for advice as to how they can help him. Deaf CAMHS (the people who diagnosed Evan) can hopefully help us give the teachers the support they need. The teacher of the deaf has agreed to make the referral to deaf CAMHS, so hopefully we'll have things in place long before Evan sits his GCSEs. 

That's all my news for now. Thanks for reading and I look forward to catching up with you soon. X 

 

 

Steady is good.

The latest news. 

I've had a fairly rocky few weeks on the mental health front, mostly thanks to lack of sleep. I don't know whether sleep deprivation has caused me to have a bumpy ride, or whether the lack of sleep is a symptom in itself, but it's been horrible. It's no fun being wide awake at 3 or 4am night after night after night. I tried all the usual home remedies, tried sleeping tablets and so on, but nothing seemed to work. 

Finally I saw my psychiatrist and he added a new medication, mirtazapine, into my already sizeable pharmaceutical diet. He said it would make me feel sleepy if I take it at night. I'm hoping it'll help, though it's probably a bit early to tell. Fingers crossed. 

The boys went for their regular kidney check ups last week. Things are ok, but unfortunately Joe's kidneys are struggling now, despite the medication he's on. This is in line with what's expected with Alport Syndrome, but that doesn't make it any easier. Thankfully Joe's very pragmatic and says because he feels well in himself, he doesn't worry too much. I'm glad he doesn't worry; it's hard enough to be 16 and about to sit your GCSEs without serious illness thrown into the mix. The doctor wants to increase his medication and with any luck this will protect his kidneys for a good few more years. 

Evan's doing really well on the kidney front, he's lucky enough to have escaped the medication regime so far. He's being closely monitored and for now, he's fine without it. Both boys are very deaf, but their hearing aids are fantastic and adjustments are made at school to help. They are lucky enough to have a fantastic teacher of the deaf, although I'm not sure whether this will continue once Joe goes into sixth form. 

Joe did his mock GCSEs a few weeks ago and got some fantastic results. We have a parents evening for Evan this Thursday and we honestly don't know what to expect because he hardly tells us anything that goes on at school. He's definitely the strong, silent type (a bit like his Dad!) I do worry about him, though he tells me that things are 'fine.' It's a tricky one, he's a 14 year old boy, he's shy and he's autistic. I never know which of these things is involved when he struggles to communicate with us. I just try to let him know that I'm here for him, whatever he has going on. Overall he's quite a contented person, I think. He loves films, playing the drums and the Xbox. 

Practical matters are fairly steady, which is great because the last five or six years have been eventful. We've moved house, the boys have started high school, we lost our beloved greyhound Barney and adopted a lovely new hound called Kuro. Our new(ish) home has turned out to be perfect for a family with two teenagers who need a bit of space. They tend to commandeer the basement, so it's almost (but not quite) an adult free zone. 

My mental health situation is manageable. The meds I'm on keep me fairly stable (subject to the odd blip here and there). I recently started doing peer support work with Mind, which I really enjoy. I'd love to study again if my health permits, but I need to take things one step at a time. I've learned that starting things isn't my problem, it's being well enough for long enough to be able to see them through. One day though, maybe...

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"

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.