This is one of my harder blogposts to write, because though I talk – a lot – about the impact my mental health has on my day to day life, and has done for a while, I’m pretty sure that this is the bit no one really understands, causes the most…misunderstanding and I hope, because I wouldn’t wish it on anyone, they can’t relate to. If you didn’t know that psychosis was a feature of my mental health diagnosis, or didn’t understand if you’d heard it mentioned before now, please…don’t start changing your opinion of me. That’s the biggest reason those of us with serious mental health issues aren’t as open as society needs. Because we lose people.
It was so hard to write in fact, that I didn’t, for a day. So, you’re not imagining it, this post went up a day late.
Sensitive child, with imaginary friends
I wish I could say that I know things would have been different now versus 30+ years ago, when I was growing up, but I’ll add this disclaimer to the beginning of the post. Currently, the mental health crisis, and in fact, the whole NHS service crisis, caused by politicians, is going to result in more young people growing up in various states like I did. My family did their best, and a lot of what I now know to be ‘just not right’ was ascribed to me being a sensitive, empathic child with a high intelligence. While I’m not saying that’s not true, I do feel that the fact that I wasn’t caught as autistic, or having issues with sensory processing, or possibly even ADHD as a child and teen says a lot about how the school system is ill-equipped, in a standard setting, to recognise that intelligence and mental health ‘quirks’ don’t always go hand in hand. I have a very high IQ, but, here I am, at 44, and I basically live a life that is safe for me thanks to my partner. I’m not saying it’s not because I can’t work, because I can and I do, but…I’ve had to build a job around my health, and right now, I’m at a bottleneck and don’t like it.
I grew up on a ‘working class’ estate (in quotes, cause I hate the terminology) in Edinburgh. By the time I sat my Highers, I was really struggling with my mental health, and it was basically ignored by the school. Hindsight being what it is, I was already becoming isolated and a bit insular, but I wasn’t the most popular girl in school, and was in fact bullied for most of my life, and…along with other incidents, the things I took comfort in – everything in my imagination – began to twist.
I’ve always seen and heard things. Always. But as an adult, those things became more violent, and more inward aimed.
I’ve addressed this a few times on Facebook, but…I hear and see one specific person. When I’m having a really bad day, she can distract me enough that she can convince me the house is on fire, or that people are coming for me with knives. But even on my ‘good’ or ‘neutral’ days, she’s there. She’s shouting at me now, for writing this, reminding me that I’m in a house on my own and that I’m on the top floor, and anything could happen. She…she’s always been there. Always. Whether she’s a manifestation of the things I think about myself, or something else is pretty much up for debate, but…I’ve never known a time that I can’t hear and see her. I’ve tried antipsychotics, and they don’t get rid of her, they just dull down the constant anxiety I live with (and hadn’t actually realised wasn’t supposed to be there until I asked after a trial on meds), so I find it easier to maintain a facade of not listening, and not reacting.
It’s hardest in situations where I’m either not in control, or there’s a lot of noise – especially loud noise – and motion around me. Which is why, I think, even my GP is surprised that I like LudoSport so much. And I’ve noticed that my best days are when I’m focussed on Petrichor (other post today, she’s my blade), and just doing what I’m told, rather than trying to keep track of everything and everyone. My BEST days are when I can wall her off for a bit, and do the things I love without fear. Tempus, my other half, supports me in finding those slots, but those days really are few and far between.
The best I can do to manage ‘her’ is to remember mindfulness, breathe, and try to ground myself.
No one knows unless I tell them – or they see me react
I think the most surprising thing about having any type of psychosis, even though it makes perfect sense if you think about it logically, is unless you tell someone, they don’t know. But… I’m going to explain why it’s surprising from, well from my point of view. Maybe others that live with similar (and again, I hope you don’t, it’s horrible, wouldn’t wish it on my worst enemy) will agree, but if you live with psychosis for long enough, it’s normal to think that it’s real. If you’re so used to it being real, it’s…surprising that no one realises that you’re reacting to that, not something else. So, I understand why people are surprised when I talk about psychosis in such…steady and measured terms, but I still marvel at the idea that I’m the only one that actually sees her. That no one knows unless I let on.
And that’s the biggest issue with psychosis, after the physical and mental effect it has on those of us with it.
I bet, if you didn’t know about what I deal with, you see me a little differently now. And that’s ok – we always change how we see, and feel and think of people. But…I know that people will always wonder if I’m so unstable that I’ll hurt them – or others. Because that’s how people with a psychosis are portrayed. Whether it’s a component of schizophrenia and those cluster of diseases, or standalone, like mine (well, not really, I have CPTSD, Anxiety and other issues), I know that people see me as the media portrays psychosis.
It’s why I wrote run girl run. That’s a shared ‘R’ on Friday, because that’s my big news this year.
Like any other mental health issue though, instead of believing what pop culture portrays, think about me when you hear ‘psychosis’. If you didn’t know about it before this post, think about what you thought of me back then – I’m sure ‘funny’, ‘intelligent’ and ‘caring’ featured in there somewhere. That’s far more important than my mental health issues, because I still am. It’s important – and stigma breaking – to remember that label just means that I need extra help sometimes, that I’ve got an underlying reason for being a bit nervous of certain things, and that I’m no different from the Kai you knew going into this post.
I’m in a bit of an odd, vulnerable place right not. And it’s been going on for about three months. Because I literally started writing this post in June of this year. And stopped.
I don’t know how to put into words how hard the last few months have been, if I’m honest. It’s been a rollercoaster of trying to work out what to do and how to do it, and if I’m entirely honest, it’s been painful and unpleasant and just not fun. A lot of it too has to do with stuff not really in my control. I am disabled and care for someone disabled, and the last few years have seen that ‘commitment’ as it were, rise and rise. The more time I put into getting better, it seems the more time I need.
In June, things really started to slip. I wasn’t in a fully regular routine and with summer just around the corner, all my grand plans for getting help and getting stuff done(TM) were shattered when various things happened. Fast forward three months, last week, and everything just… collapsed in a spectacular fashion.
There is a light at the end of that tunnel
This week, we’ve had a house full of sick people – my beloved caught Covid (he dodged it, somehow when we had it, but we think we picked it up at Alton Towers as a few days after our day there, he was so ill that, completely unlike him, he took to bed for most of the day from Saturday till this morning. He’s much better now, to my intense relief), and we’re slowly sliding back into a routine of sorts. But on Tuesday, after he’d thought about stuff I’d been saying I guess, he told me that he wants me to just focus on writing for a bit. To stop trying to fight against ‘the tide’ because though I was trying something big and bold, the public encouragement was there, but in private, more people wanted ‘a free slot if everyone else was paying’ than the people actually choosing to engage with the plans themselves. Months of work on designing a coaching project aside, the discouragement I felt – and if I’m honest still feel – became so palpable, that I … I spiraled completely.
My beloved to the rescue…!
Tuesday night, I’d had a rough day (plague house, shingles break out for me, cold-sores starting, the works), and I went up to bed and I said to him ‘I can’t do it’ and he said ‘k. Tell me what’s in your way?’ And I told him. About how people want to do it but don’t seem to be signing up, about how it feels like the wrong time to be asking people to commit to coaching in this environment, how most of all, it’s not easy to teach people mindfulness, abundance and accountability when I’m not a reflection of it myself. He went very quiet and said.
“I think it’s because you’re not writing. How about you stop and do that for a bit.” I told him that the business wouldn’t survive if I didn’t get this to work, and he said “We’ll make it work. Trust me.” And that was it.
I’m not saying it’s not going to be painful, but, he’s right. I wished for a way to afford to write again, and it’s not the one I’d have chosen, but I am grateful that he’s willing to back me until I’ve got that bit of my life square again.
It’s still taken a couple of days to write this. I’m still dealing with a shame spiral I CANNOT fathom, because I feel like, once again, I’m letting people down. But at the same time, I’m actually willing to look at my laptop again. I’m sad because I won’t get to earn my Remarkable the way I wanted to, but…I don’t need one to write. There’s a lightness of heart to go with the ‘oh, I don’t like this’ failure feeling.
So….yeah…that’s been my last three months. What about you guys?
(actually, one notable exception. Ludosport. I’ll talk about that next blog post).
Like many millions of people, I’ve now had at least* one confirmed CV19 infection. Irony, as the UK released all restrictions and we learn to ‘live with Covid’, two of us caught it. And while it was mild, I’m still tired, I’m still recovering, and I once again remember why my doctors are cautious of me, and I can’t even think or wonder how others might be coping with this, or not. And I’m just thankful for vaccines.
I’m actually thankful for a lot of stuff, which I want to talk about before I go after the government. Which I will be. I am thankful for the support I’ve had, the care given for vaccines, the fact that my GP has been kind, caring and working with me as best they can. I’ve never had an issue with our local surgery, and because they know us, they know when I ask for something, there’s a good reason for it. I’m also thankful though, that we’ve been able to follow all of the guidance to ensure that we actually didn’t get sick until year 2. Given everything that happened with Titanboi and his extra kidney (which ended, as in, the stent came out, the morning we went into a sixteen week lockdown in March of 2022), we’ve been lucky, and safe for the whole time. A lot of the time, that has been down to the choices we’ve tried to make, following guidelines, but, we’ve had so much that we can do that others might not have had the luxury of, and that’s important to be clear on. A lot of why we’ve been ‘ok’ is because we’ve had the opportunities that let us protect ourselves and our community.
We did also lock down, entirely, for the week and a half @artenapan and I were testing positive for. She had a terrible cough, and was tired (and still both are), and headaches, while I had all that, and a temperature of 39.8(C) for more than a couple of days. That temperature was the worst for me, and I had a BAD chest infection, so was given steroids and antibiotics. Artenapan spent the first ten minutes of us suspecting that she needed serious help because she had a ten minute coughing fit. Those ten minutes, I have to be honest, were the most scary ten minutes with her, ever. But we got her to stop coughing, we tested, and our LFTs were out in record time. In her case, 2 minutes. And, we then did what we could to protect everyone around us. We cancelled my son’s visit for Mother’s day (which we had this weekend in the end), and for the week we were both sick, it was kinda miserable in the house. We are, however, recovering. We are lucky.
This may not be the popular opinion but…
I don’t go political very often, though I am an outspoken about a lot on my own profile, and I’ll go on the record and say that the NHS rock. They’re doing a job they are not funded for, and that’s the government’s fault. And at every turn, the government – especially the current Tory cabinet, who I’ve lost track of through various reshuffles where they play musical chairs – are just insanely inept, and at every turn, demonstrate why politicians SHOULD come from the communities they serve.
My partner and I both feel that if an MP wants to judge someone’s life, they should experience it. Let’s see them live on the average wage, especially with our current energy price hikes. Let’s see them live on what people are earning at their poorest. Let’s see them deal with children that need special needs and work through their SEN meetings, and social service support. Let’s see them get the mental health support they need after ten plus years of cuts (and again, the NHS are heroes for giving us the support we get. I am NOT going after them, despite some of the issues I’ve had with them. I’ve had issues, yes but, Dr C and M, my last psych nurse, were actually my friends by the end of it. I still write to them twice a year. They gave me … not the life I had, but the best life I can have now back. I’ll talk more about that when I get to P for Psychosis, but… one of the things we’ve talked about is that if the government stopped defunding critical services, and expecting us to be ok with that. It’s not ok.
Full circle in one sentence
No thanks to the government, thank you to the NHS, who got me through a bout of Covid. Yes, we’ve managed to be the lucky family – so far – who lives with covid – but through no thanks of our local MP. He doesn’t speak for us, elected for us though he is. And the whole government? With the deaths and other issues that have happened since Brexit, and Covid (though some of it was unavoidable), they should be ashamed. They aren’t. But they should be.
I did also want to add…
I’ve mentioned the fuel crisis in the UK. Our energy price caps jumped by 50% now and it’s predicted it’ll happen again in October. We, as a family are still lucky, and safe, but I know many people that are not. Our government has done less than nothing to prevent the week of stress all of us have been through. And to be clear, we’ve been stressed and we know we’ll manage. It’ll be more money we pay out for our utilities, but we can do that. But we know families that are living in fuel poverty, and the insipid response, alongside the absolute clusterf*ck that was trying to get our meter readings in before the prices jumped, was absolutely insane. In my case, I was awake every two hours, and kept trying. Started at 11am on the 31st. Finally got my meter readings submitted at 4am the next day. I can only imagine what people living on the poverty line already are feeling, and the last thing we need, after two years of isolation, is to hit next winter, and be dealing with illnesses based on poor heating, and other problems related to poverty, let alone the mutations we are probably going to hit from Covid, the overstretched NHS, and the exhausted staff…many of whom may be just as affected by fuel poverty (no, I’m not kidding). So…this was C for covid, but it’s also C for ‘Can we vote them out and press charges?’.
*I say at least once because we don’t know if we’ve had it before now.
Last Monday, I posted about how myself and my youngest tested positive for CV19. Monday/Tuesday, I started getting really sick. Monday, I’d been quite cheerful – after all, Artenapan, my daughter, had had three days of a cough and little else. That’s not how it played out for me (spoiler, it’s REALLY not how it played out for me). The net result of last week was a week spent either in bed, sleeping, in a cool bath, or generally feeling like I was being slowly boiling alive. I mean it’s been great for story ideas (that make zero sense now that I’m thinking through them, but they worked when I was awake at three in the morning, staring at the roof), but it’s also been less than brilliant looking at what I’ve wanted to do over the last few months.
And heading towards #Kaiatus too…
The plan was that by this time now, we’d have several books out, I’d be tending towards various more announcements, but the truth is, I’ve struggled, a lot. I don’t have excuses, it’s just how it’s been the last few…it’s just how it is. I’m planning on changing that as we move forward, but I’ve decided to go with the flow. We were going to offer a bundle for the rest of the year with various books, but I’ve got to be honest, I’m not sure I want to promise that. I’d like to say we’re doing something to move forward, but…I can’t say what we’re doing till we do it. I’m working on my pages, I’m working on projects, I’m working on my happiness. I’m working on my writing. I’m working on myself mostly. But I’ll be moving forward as I can. We’ve got so much back end work to do but it’ll be ok once we get there. But I can’t say when it’ll be. I’m just pulling myself up for now and hoping that we’ll eventually just make everything click. 🙂 And then there’s Camp Nanowrimo too!
On the 1st, I’ll be starting the A to Z, and I’m hoping that I keep improving, but I’ve been so tired and sore and it’s just…. hard to think about what I’m doing moving forward, until I’m moving. But the thing is, I am moving. So, we’ll see. I’m hoping too, to unveil a new look here, but that’s been delayed because I was sick.
Anyone else taking part in the A to Z? What are you doing?
When I was discharged from therapy, I knew there were going to be times I went a bit off track. What I didn’t expect was one of the things that I’m enjoying – a lot – was going to be the thing that totally destroyed me this month.
I’m not saying either that it’s actually about the people at the group I’m participating in. In fact, I think they’re making it easier on me, and instead of things being unbearable and stuck, it’s just nightmares and stuff to work through. But being triggered is a really wierd thing.
Mostly because I’ll be realistic about it – there’s no reason to believe that I’ll be beaten to a pulp, just for being me. There’s no reason to believe people will hurt me. It doesn’t change that not only does it happen, but it’s painfully obvious that I’m not going to get over it as easily as I’d like.
Then, there’s the added pressure
I keep saying this, and the more often I say it, it feels like I’m minimizing what is going on, but it often feels like the things that I take on are always looked at to see if they’ll benefit others. I’ve spent the last haze of days talking about various things with various friends, but the overriding sets of conversations have been in three categories. One, insulting, and asking why I’m doing (x). They’re being removed from my life. The second, which is also the least of the interactions I’ve had, have been encouraging. And the third?… It seems to come up more and more, but I’ve spent the last six months or so telling people ‘no’. No to coming with me when I go to projects. No to visiting with us for now. No to introducing people to other people.
The power of ‘and’
I’ve been looking at the fact that I keep saying that ‘they don’t mean to do this.’. I’m telling them no, they’re arguing, they don’t mean it vs, I’m telling them no, they’re arguing, they don’t mean it and it hurts me. The ‘and it hurts me’ is the bit that really gets me though. I’m not sure how to get passed or around that, but I’m thinking about that. And isn’t any more of an excuse than ‘but’. It feels like it, though it’s more about making things sit right with me. Because honestly? My life is about how I survive it. If I need and, but, however, and other mitigations and codicils to forgive people because they don’t see things my way (because maybe, just maybe, I’m wrong). Regardless, sometimes I find it hard. It’s not all bad. The power of and got me to various projects that I’m really loving and starting a new blog, and re-evaluating a lot of the time I’m spending with myself. It does feel very much like advance and retreat though. Two steps forward, four back. And honestly? That’s therapy, I guess?
The power of and got me to continue Ludosport. I’m reactive, on edge and tired and I’m learning a new set of skills.
I’m exhausted every night we train, and I’m losing weight.
There’s a few things I can’t really get my head around, like the fact that I’m having nightmares (triggers, aren’t they … just wonderful), and that’s interfering with my sleep. I don’t blame any of the people training me – in fact, as long as I keep telling myself ‘and it’s ok’, I’ll hopefully learn to sit with the things triggering me.
Quite honestly, I’m not entirely certain how I feel right now. There are so many different things that I’ve been thinking about. How we measure success. What we consider ‘worthy’ work, when we think about our lives, and how we decide to measure what we’re doing. Like water over rocks, we often smooth away the knowledge we don’t like and find a way to let it settle. And time, like water down a hill, never stops.
Judgement – my own worst enemy
Self-judgement that is. And I think that’s true of all of us. We’re ALL our own worst enemies when it comes to deciding if we’re ‘doing what we’re made to do’. Which in itself is a loaded sentence.
I really hate the whole “we’re human beings, not human doings” concept. It distils and negates a lot of the struggle we all have with the needs and responsibilities, the wants and the necessities we all carry and balance. I’m a human being. I am. What I am right now? A little bit stressed, a lot melancholy. Because I’m judging myself against a list of things that I just can’t expect to meet. What I can say though is that I’ve achieved a lot that isn’t ‘obvious’. I was discharged from therapy, and told I’d successfully completed the work they wanted me to which is…awesome. I went into recovery care with the local unit over seven years ago. I moved two years ago, this week, to the unit the county over. I’ve put a commendation about Dr C. and my nurse, M, with my MP, I feel that strongly about their care. The whole NHS should be praised, for the last few years, of course, but the team that cared for me over the last few years especially, since just after my 40th birthday, are people that went above and beyond and made a real change to my life.
The grain silo, Being Human and more…
I’ve talked about these essays but never finished them. Some are actually in ‘And Miles to go before I sleep…’ and expanded upon. So, along with the retrospective coming for the rest of this week, and looking forward over the weekend (the blog is going to be busy), but I’ll be releasing the essays ‘The Grain silo’ and ‘Being Human’, along with the pre-order link for ‘And Miles to go before I sleep…’ over this week. I’ll maybe even get to talk about the major business project we’re launching. On Saturday or Sunday, I’ll release our sort of calendar, and aspirations we have. And they are aspirations. Not deadlines. Not must do’s. The pre-orders are fixed, but.. other than that, we’ll adapt. And the we in this case is my beloved, my family, my friends and I. Being Human isn’t to be alone. And I’m not.
That sounds like so much fun! I love games, especially RPG. Haven't played with a group in a few years.…