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! 

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. 

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.  

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.

Oneirataxia

Oneirataxia - the inability to distinguish between dreams and reality.

Someone asked me the other day, "what's it like to have psychosis?" I was momentarily stumped. The thing is, my psychotic experiences surely won't be the same as anyone else's. They might fall into the same broad categories - hallucinations, unusual beliefs, voice hearing, but the actual content will be unique because it's coming from inside my head. (Let's not muddy the waters by saying I don't necessarily realise it's coming from inside my head at the time...!)

The best way I can describe my psychotic experiences is to say they're a bit like dreaming, only I'm awake. Things can appear quite ordinary, until all of a sudden, they don't. I can be walking down my road and see someone lying on the pavement. I raise my foot to step over them but they disappear (making me look a bit odd). My kettle once sprouted wings. My shower spewed out worms. Some of the things I see and hear are extremely disturbing - I won't write about them in detail here but they often involve death and decay. Other times, they're quite mundane (the dog which appeared and promptly disappeared). Many of my experiences are visual, but sometimes it can be a smell - usually a bad one. Occasionally I hear voices. Sometimes they're indistinct and far away, as though next door have got their radio on. Other times they're as clear as if someone is standing right next to me, talking straight into my ear hole. They say all kinds of things, from the mundane to the terrifying. Sometimes they speak in languages I don't understand and can't even identify.

Personally, I see my own psychotic experiences as part of an extreme stress response, but whilst I accept they're part of the wealth of human experience, to me they're often unwelcome and intrusive. That's why, right now, I choose to take medication to help with these symptoms. That's my informed choice, for now, though I respect the rights of others to choose something different. One thing's for sure - it's quite an experience.

A to Z?

I thought I was doing pretty well, recovery wise. Actually, I take that back, I WAS doing well with my recovery. And then...

I started feeling as though someone was following me. There was a dark shadow at my shoulder, which disappeared whenever I turned around. Then the voices started. Sometimes a mundane kind of commentary, "she's making a cup of tea," sometimes hostile "fat bitch, you need to lose some weight." Or worse.

I started seeing the world through a kaleidoscope of colour. Shifting shapes before my eyes, changing shade rapidly. Then I noticed a smell. A bad smell, rotting, like bins left out in the hot sun. It followed me around, so I reasoned I myself must be the source of the smell. I started bathing and showering multiple times during the day, changing my clothes. Nothing would shift the stench. I had butterflies in my stomach almost permanently. I began to believe I was host to a colony of parasitic worms and that I was rotting from the inside. I could feel them shifting around under the skin of my abdomen -  that was the source of the butterflies in my stomach. I borrowed my husband's electric drill and told him I was going to drill a hole in my stomach to get the worms out. Luckily for me, he relieved me of the drill, put it in the shed and hid the key. I was quickly taken on  by the home treatment team.

I began to believe that if I took all my medication at once, I'd be well again. I had quite a stash - anti psychotics, anti depressants, mood stabilisers, diazepam and zopiclone. A cocktail of almost- certain demise if taken all at once. I casually mentioned my plan to the CPN from the home treatment team. I had no reservations about sharing my plan because I thought it the most logical solution in the world. He made arrangements for my medication to be dispensed daily, so I didn't have so many meds at my disposal.

The psychiatrist changed the dose of my anti psychotic and recommended I continue to be seen by the home treatment team. And that's where I am right now, battling with the interface between reality and unreality and trying to challenge unusual beliefs with logic and 'common sense.'

I realise that recovery isn't a linear process, A to Z in simple steps. The way I see this is I've wandered down a blind alley by mistake and have to work out how to get out of it. A diversion, if you like. I'm really looking forward to getting back onto the road.