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E is for a rant on EUPD #atozchallenge

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I’ll be honest – you may want to avoid this post if you’re not interested in a rant on various things, and my perspective (which is both personal and anecdotal) on EUPD, aka borderline personality disorder.

This post is under a read more because it’s got triggering topics.

A history of being a person with a border

I was first diagnosed as depressed in 1997/98. Even back then though, there was an odd one or two days of the year where I was totally out of control. I wasn’t sleeping for days at a time, I was taking stupid risks and I was not the person everyone knew. I did a couple of really stupid things back then – the biggest one of course was leaving the military. I was diagnosed as depressed because the periods of depression were far longer than the mania, and that continued until I had my son. Then, there was a bit of a shift, and some of those caring for me thought I might be bipolar. Which made sense, but I resisted meds for as long as I could. I took the positive as far as I could with it, obviously, because part of it was this site.

But, after being on antipsychotics in 2011, and then going back at the end of 2014, and discovering all support has changed, and slowly but surely, I started encountering psychiatrists I just didn’t agree with.

I have to say from the outset, I respect the professional effort, education and care that goes into becoming a psychaitrist or psych nurse or anyone with care of people with mental health. I just had a run of really bad luck. So, while I’m criticising the people that cared for me between 2014-2018/19

And this is where the rant starts.
I do want to say though, there is a happy ending to this story. Firstly, I was taught CFT, at least, the beginning of it, and that and the people caring for me now have made a *massive* difference to my outlook. I still struggle, but I’m doing better than I was, for the most part. My current team are amazing. We work well together, and though this year has been a challenge with Lockdown in the UK and CV-19, and trying to avoid making more work for them, we’ve managed. And I now also understand some more of the motivation of why I was labelled as I was.

I’m sorry to say, I still don’t agree.

I don’t live on the borderline

Over the following five years, I met one psychiatrist twice. That psychiatrist decided I was borderline, not bipolar, and when asking for opinions, only took them on board when they agreed with him.
Of the psych nurses and psychiatrists, I passed through in this time, advice ranged from ‘practice abstinence to prevent miscarriage, and we didn’t give you permission to have more children anyway’, ‘have a glass of wine before bed’, ‘if you have side effects from meds, it always means you don’t need them’. I was bullied, and at the core of it, was a refusal to reassess or explain the assessment fully of why I was changed from bipolar to borderline personality disorder.

Over the years I’ve tried to work out what diagnosis criteria they were using (the honest answer to that is basically all of them), and how to deal with them, but every time has left us with more confusion. And I gotta be honest, there’s been a tonne of things we’ve had to discuss with them, we’ve not been able to get to the bottom of it. But one thing I did do, is that I had to move to another county, and got to the place I needed to be, and with therapists I’m dealing with, and they’re wonderful.

One change – wide-ranging repercussions

I’m not sure how many other people with mental health problems know the stigma of having issues like mine first hand, but for the three years directly following being diagnosed as borderline, every single time I ended up in A&E, whether I was vomiting blood or had cellulitis, three questions always started most conversations about pain meds, all centring around whether I’d done it to myself, whether I was faking and was I drug-seeking. We discovered in the following few years after having it changed from EUPD to CPTSD, that the difference in how I was handled was stark. I’ve been in hospital within six months of the change, and even my partner was stunned at the differences.

No one asked me if I was attention-seeking when it was mentioned I had CPTSD.
No one took my meds off me that I’d brought with me to stay on schedule, and in fact, because I was badly triggered and wasn’t feeling my best, a nurse went out of her way to help me. Six months before in a similar situation, I was told to stop being a crybaby.

CPTSD isn’t something that everyone agrees is a diagnosis that can co-exist with bipolar disorder. We’ll see.

So…that’s my rant.

Live, Thrive, Survive with Bipolarbears - Live, Thrive, Survive with Bipolarbears - text by Kai

A day in the disordered #atozchallenge

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  1. My AtoZ blogging challenge reveal 2021 #AtoZChallenge
  2. A for ‘are we there yet?’ #atozchallenge
  3. B is for Books – Walking off the earth #Finalchapterinthisbook #newbook #atozchallenge
  4. C is for Can do #atozchallenge
  5. A day in the disordered #atozchallenge
  6. E is for “eeek, I overdid it!” #atozchallenge

(again, as this is backdated, I’m writing this with the benefit of hindsight).

I did actually have this rather neat post about ‘a day in the life’, but, the last few days led to a bit of an epiphany.

You know there’s an Instagram bubble? I think when we write ‘days in the life’ that we sometimes make ‘blog bubbles’. So, instead of talking about what my ideal day should look like, and what it does when I’ve planned it out, I’m going to write about what my day actually is. And for the first time, I’m even going to include some of the mental health stuff I deal with – so this post could be mildly triggering.
I’ll be possibly alluding to self-harm, definitely talking about psychosis and depression and anxiety and insomnia. And I have a favor to ask at the end of this post.

A day in the disordered

I fell asleep at 11:30pm – a year of training and working with an app called Headspace and other meditation apps (honourable mentions to Digipill and Let’s Mediate (I have them on Android, they may exist on iOs), alongside my partner, which is now 80% of how my sleep works out.

Unfortunately, about 1:30am, I wake up again. I wake up to a voice, that I always hear. She’s my constant companion, and she’s very hurtful. If I’m lucky, I take a sip of water, I go to sleep again, and I might get to stay there for a bit. Most nights lately though, I’ve been waking up and finally falling asleep again at 5am.
The advice is, of course, if you’re not able to sleep in bed, to get up. But if I do that and she starts causing trouble for me. At her worst, she can trap me in the smallest rooms in the house. She’s the reason that I can’t get out of the house alone. She’s the thing I’m fighting back with my favor, but we’ll get there.

If I don’t get to sleep until 5 or 6am, I’ll either stay asleep till 8am, or 11am, or sometimes, I’m asleep till 2pm. And because of that, my day is always harder to plan for. How do I plan to be up at 9am, and exercised and ready to work, if I’m not getting to sleep until 6am? The answer is I don’t.
Insomnia is a difficult and hard to live with disorder – couple it with anxiety and psychosis, and though meditation helps, I’m frequently operating in arrears of sleep.

And that’s why I can’t talk about a day in my life. I have half an hour when I wake up that’s a set routine (get up, unplug and box tech coming downstairs with me, plug in anything, such as my Bluetooth headphones or spare batteries that need charged, wash face, rarely moisturise (I’ll be talking about that in S for skin routine, cause apparently, I’m annoying as all hell about that), meditate for ten minutes after making the bed, then come down. At night, I either go up before Tempus and grab a bath, then make my juice/waterbottle for my bedside, plug everything in, brush my teeth, get my Bluetooth headphones connected so that I can meditate, set up the book we’re listening to on Audible. Depending on how I feel then, I either read for 20 minutes, then meditate, or lately, I’ve just meditated, and used a sleepscape to go to sleep to. And then wake up again at 1:30am.

I can’t talk about this really here, but there is going to be an I for Insomnia over on bi-polarbears (the link won’t work until the post goes live 🙂 )

And that brings me to a favor…

As many of you may or may not know, I’m an author. My major project this year is to talk about the fact that I live with a pretty severe (though not the worst, by a long shot) psychosis. I think I’m probably at the end of the ‘living in the community level of it,’ though, she’s quite hard to deal with. As an author too, it becomes difficult. I ‘hear’ my characters, and I don’t like that I hear and see things as well as part of my mental health.

On my birthday, I’ll be releasing a collection of mental health books. I’m not putting up the pre-orders yet, but I am asking people to subscribe to my newsletter, so I can start talking about the run-up to releasing them.
There may be a Patreon, there may not.

What I want to do though, is to remove some stigma surrounding both hearing voices and other psychosis, but I also want to acknowledge that authors do hear voices, and that *is not* as far as I’m concerned, is a psychosis. But I guess that’s between you and your healthcare team.

What I do know is that she’s stolen five years of my life. I’ll never get them back, and while I’ve done some things in there, I’ve not gotten everything that I wanted to do, done. There are other things, of course, that got in the way, it’s not just been mental health, but if I can remove from the whole concept of ‘we don’t talk about this, we’ll get into trouble’, then I will.
And I hope you’ll help me.

If you’d like to, ALL I need you to do is to sign up for my newsletter and join my mental health street team. That’s it. If you also want to share this post or the post about the project, I’d be delighted.

I’ll be talking about about this at P for Psychosis, because it’s important to me. Here, and at Bi-polarbears. I’ve avoided telling people I have issues such as psychosis for so many years, that it’s a bit uncomfortable for me, but I also know I’m in a good community, that accepts me for who I am, and knows me as I am, psychosis or otherwise. I hope to help others like me – because I think in the coming years, as we come out of lockdowns and the shadows of what we did to deal with the pandemic, that mental health is going to be a major issue – more major than even now, and I want to help people that need help. So I am.


The blog of D Kai Wilson - The blog of D Kai Wilson - text by Kai

E is for “eeek, I overdid it!” #atozchallenge

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So, as a few of you have noticed, I’m already behind.
I’m not sure if it’s something to do with some last minute plans that were thrown in my path, taking time out to support a friend, or that I just don’t have a great grasp of time since the UK entered lockdown (what do you mean we’ve already had Easter? no way… wasn’t it just New Years?), or if I just didn’t practice great time management, but I’m a touch behind.

So, today’s titlted EEEEEK!

And I’m going to share a few tips of how I try to manage it, when…I get it right 😉

Time management 101 – leave room

And I think that’s where I made the mistake. I didn’t leave room this week – at all. And while you can’t plan for emergencies properly, I always have a rule that for every piece of time I have planned, I leave 15 minutes on either side of it.
Got a therapy appointment? Keep thirty minutes spare.
Date night? Thirty minutes.
The thing is, I’m absolutely going to be pushing this to the limit, as today is the first official day of TM112, at my OU degree, for Cyber security. Which means I’m going to be planning more time, and putting in more space.

The other issue I have with this is it’s advice *I* give. I’m terrible at following it.
I was planning yesterday’s post to be ‘a day in the life’, but reading it back, I realised, I really should rewrite that post as ‘a day in dissaray’ because my ideal day in the life isn’t the one I live.

And when all else fails?

Like now? Apologise, work out how to catch up, and go for it. Seriously. Life is too short to punish yourself.
In my case, I’ll be doing my main blogs, and keeping the 26 prompt story to go back to. So bi-polarbears, here, my book blog, and, as Deirdre has injured herself, I’m probably picking up These our Fandoms too. Once I’m caught up, I’ll try and get ahead.

What do you do when life and plans collide? Got any hints?

As to WHY I got a bit behind? Normally I do my catchup on Sunday, but instead, I was in an Arboretum, taking photos, falling down hills (no, really, I’ve twisted my hip and scraped my leg. The camera is fine tho!) and spending time with my family in the spring air. The UK is coming out of lockdown, so we didn’t get to do everything we might have liked, but we did a lot.
(this is Batsford Arboretum, and these are unedited photos – my daughter, Artenapan will be posting some later on her Instagram, and has already!)

The blog of D Kai Wilson - The blog of D Kai Wilson - text by Kai

Five things to try when depressed #atozchallenge

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Depression is a horrible thing – it affects one in four of us, (though I think the statistic is much higher) and often, leads to more serious issues, such as anxiety, and insomnia, or conversely, can be fed by them.

I’ve always been hesitant to offer advice about managing depression, in part because I don’t want people to use my advice and get into more difficult situations, or worse, become even more depressed, so while I’m offering five suggestions, there are of course others.

My top five go-to’s when depressed

I’m not kidding when I say that these are my top five, and in this order. I am trying to take my medication far less, so none of these are ‘take your meds’, which I’ve found is a suggestion that happens quite a lot.

  1. 1.Have a relaxing bath or shower – find your favourite scent (whatever you have accessible) and have a bath or shower. I’ve found a great product on Amazon, called Feather and Down, which is a sleep spray, but their bath oil to milk is just divine. If you’re not a bath person, grab an indulgent shower. Break out your favourite moisturiser, shower gel, whatever you like that makes you feel better. If you’ve been less than great about brushing your hair, put it under a shower cap, you can deal with that after your bath, when you feel up to it, or if you want, give it a wash too.
  2. 2.Indulge in something just for you – my partner often brings me home ice cream or chocolate, but actually, what I like doing is having five minutes just to myself in the forest, which is why we go out to local forestry parks, or Arboretums. (yes, it’s called Forest Bathing, which is something recommended for depression)
  3. 3.Indulge in one of your hobbies – I know it’s hard to feel comfortable doing something only for yourself, but it’s important to try to relax into a hobby. And you deserve time to yourself.
  4. 4.Spend time with your pets – spending time with my cats is some of the best therapy for me.
  5. 5. If all else fails, if you have one, curl up with an anxiety blanket. If you don’t, I recommend getting one – they’re well worth it. Again, there are some available on Amazon (UK link – US link). I’ve had several anxiety blankets, and I’ve found that I sleep better, and I calm down faster.
    The research based on anxiety blankets is extensive, but my own experience (anecdotal as it is) is that it’s a great aid.

    While these suggestions work for me, the biggest recommendation I can make if you are depressed is seek help. Go talk to a doctor.

Do you have any suggestions for people to help them relax or find space when depressed.

Live, Thrive, Survive with Bipolarbears - Live, Thrive, Survive with Bipolarbears - text by Kai

C is for CPTSD #atozchallenge

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CPTSD has been a persistent part of my diagnosis for a few years now, in part because we just refused to accept that I had EUPD. And while many survivors of childhood abuse have CPTSD, I’m one of the few that don’t have it due to what happened to me at home, as a child. There’s a theory it could have been – in part – to do with the meds I had as a child for epilepsy, or it could have been because I was bullied, but what I do know was that unlike some, I wasn’t as unlucky as others I’ve met, and that I wasn’t abused as a child by my family. This seems to be one of the key areas people focus on – if you have CPTSD, you were obviously abused as a child. And I have to say, it’s not that simple.
And as it’s an emerging label, I guess we just need to keep an eye on it.

How did I end up there?

As I’ve mentioned a couple of times on various blogs, about two yearas ago, around about the time a unit decided that there was nothing more they could do to treat me, my diagnosis was re-evaluated and changed to CPTSD. I could give a list of historical reasons why this is the case, and why most bipolars end up being reclassified as EUPD/borderline, but instead I’ll just link to this article.

I’m just a really passionate person

What got me ‘into trouble’ and the unit absolutely obsessed with the idea that I wasn’t bipolar was that I was always angry. There was no accounting for the reason *why* I was angry (I don’t do any other reaction in flight, fight, freeze), nor did they listen to me about specific things that made me feel as if y only protection was to be protective of myself.
The line though with the first team came when we had to complain about them and they said ‘everything in her record is completely accurate and justified, and we had didfferent letters, so…that was fun.

At the end of that road

I try not to focus too much now on what went on back then, but it wasn’t the best of times. And due to the way I’d been handled before being passed to the new unit, I’d basically had six months treatment in five years, something I’m still working towards fixing now.
One of the first things I had explained to me at the new unit though was that though he couldn’t say- for sure – whether I was bipolar – he was pretty sure that I wasn’t borderline, for the reasons I gave (I have little difficulty with long term relationships, and I’m angry all the time, it’s got nothing to do with my mental health, I’m just…feisty and will argue for what I believe in. In fact, at the end of the process with the complaints team, I showed the head of the unit this table from this article and he was in agreement with me. I didn’t fit BPD, I fit CPTSD, but it still took moving to a new team to be taken seriously.

CPTSD – here to stay?

In the last ten years, the definitions on mental health have changed so often that it’s hard to tell whether we’re dealing with one classification or another, whether we’re talking to someone who uses one set of terminology or another. Whether we’re even using the same definitional syste that they are. What is clear that if you find one that’s in one of the accepted systems and it works for you, it’s ok to want to use that one, and hopefully those that care for you are open to it.

*As is the common notice on Bi-polarbears, please do not self diagnose. While we appreciate, especially now, that healthcare is limited and difficult to come by mental health is important enough that you should work hard on ensuring that you’re supported and have an accurate, unbiassed diagnosis from a third party. Take a family member with you to advocate for you, but it’s important to have an official level of support and/or recognition for your mental health status. If you self diagnose, you could choose the wrong one, and as many of the items chosen when self diagnosing require medication only accessible from a professional, self-dx defeats the purpose of getting help for things, that way. And you don’t need to have a ‘formal diagnosis’ to practice mindfulness and self-care. Which I’ll be talking about later this month.

Live, Thrive, Survive with Bipolarbears - Live, Thrive, Survive with Bipolarbears - text by Kai

B is for Being not doing #atozchallenge

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If I’m not careful, I get to be very opinionated about labels and stuff. I was going to do ‘why it’s dumb that most bipolars are being reclassified as borderline’ but…I’m grabbing for any positive posts I can make. Though, to be fair, because of how I describe some of this stuff, I suspect this one might come off as slightly opinionated too…

A human BEING

I get really annoyed with some of the meditation challenge stuff that I read that says ‘to be in the moment you have to be a human BEING, not a human doing.’. It’s actually true though. Mindfulness, at it’s core is being as present as your brain allows it, in the moment you’re experiencing. It’s about making and keeping memories, not dwelling, not allowing pain to overwhelm you and building a better way to handle the ‘world’ in general. And I know why it annoys me so to talk about being versus doing.

What does it mean anyway?

Mindfulness sometimes means, for me at least, not to switch to automatic when I’m doing something. To pay attention and note, not only differences, but the good things I enjoy about experiences. And, in being present in moments, finding the courage to face harder stuff, by remembering the lessons of ‘being in the moment’ otherwise. That it passes.

Time however, even when being instead of doing, sometimes gets the upper hand

I can tell when I’ve not got the spoons to do a being versus doing exercise when it drags ON and ON and ON. I like meditating. I struggle sometimes, and I’ve been known to do things on autopilot when I shouldn’t, but lately, meditating has been hard. Being in the moment, moreso. I know some of it is to do with the process of grieving, after losing my grandmother mid-February, and I know some of it is about the fact that I know that it’s not going to be pleasant if I follow the trajectory that I’m on, because I don’t do well with what comes next. But as I’m more about being in the moment, I’m trying not to think too far ahead.

Being though is more than…well…being

One of the concepts I think I scrabble with, and may talk about more, who knows, is that ‘being’ isn’t just about the act of staying present. It’s more than that. I’m learning that through mindfulness and meditation. I’ll need to keep talking about it, I guess, but I’d love your thoughts.

Tomorrow I’m doing C for CPTSD, but how about we just be, today? 😉

(Featured image on this post was the first picture I took of our beach at the Hotel in the Dominican where we stayed in 2018. And honestly, feels like a lifetime ago. It’s also the tree I did my final mindfulness mediation under before heading back home at the end of what was an incredible holiday)

Live, Thrive, Survive with Bipolarbears - Live, Thrive, Survive with Bipolarbears - text by Kai

A new normal? #atozchallenge

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I suspect this isn’t the article that many people are expecting, as I’m not going to be making my predictions on what things will look like when the world settles down after the pandemic, and vaccines and everything else. Instead, I’m going to be talking about my new normals, because in the last 18 years, I’ve had a lot change (oh yes, this site is 18 now. It can legally do a tonne of stuff in the UK and US. Scary no?)

Normal – a loaded word

The real reason I wrote this specific post was I was thinking about doing A for Aspergers and I had someone jump all over me with ‘actually, Asperger was a Nazi, the community was moving away from that,’ and I was thinking ‘but I’m part of that community, news to me!’, so instead of just talking about one aspect of what I’m thinking, I’ll be touching on the fact that I’ve gone from being diagnosed as bipolar in 2003, to…much more in 2021, including aspergers.
And how ‘normal’ is a completely loaded word. (well, I’ll be doing that in N for ‘setting on a washing machine’) later on the month.

Here comes the new boss, same as the old boss

The thing with diagnoses is they’re just labels that let people broad stroke know what may or may not happen on interaction with them. They aren’t, for example, the be all and end all (as one psych student once told me, ‘nope, if i were to guess from your file, I’d never have got ‘gestures at me’. And that was the part my GP choked on his coffee cause he was sitting there innocently allowing me to corrupt…well… correct really… med students. I was, when I started this blog, bipolar. Might have had a soupçon of anxiety tossed in there, but no, I was bipolar. Up, down, 60 days with a five day variance on my cycle. You could set your watch by me, apparently.
Except. I’m not.
Not any more.

The new is a bit of a shock

So, the new actually snuck in. I was first decided NOT to be bipolar because bipolar and borderline personality were so easy to mix up. And we argued that no, I was not borderline. Even when they tried rebranding it to EUPD (I’ll explain why in E is for ‘if you dare say that again, I’ll scream’). And do you know, the only person that can actually explain it doesn’t like to use it anyway. So, five years of arguing about that, being discharged and sent to a neighbouring county and meeting Dr C and nurse M and life is good again.
Dr C has changed my diagnosis to ‘CPTSD with traits of EUPD, anxiety, (pseudo?)psychosis, historic bipolar’ and is pretty sure I’m mildly on the spectrum. Mostly because I’m really, specifically, hardcore focused on the use of language and its myriad shades. My vocabulary causes issues, put it that way.

Mouthful right?

What the new normal actually is though is me meditating more (yeah, I’ll talk about my complex relationship with that later too), being mindful, and recovering. Because the five years leading up to me getting help, from 2014-2019 were when I stopped leaving the house. Which is why there’s whole sections of this AtoZ devoted to bullying, psychosis and less cheery subjects. As for the lockdown? I live in the UK and it’s getting to me a bit now, but when it started it was pretty much ‘ok, I hear this is an instruction for you. It’s a description for me.’. I’d never have wished the confinement my psychosis makes me impose on myself on anyone else, but that’s where we are right now, I guess. What’s your new normal? Anything changed you might wanna discuss?

Live, Thrive, Survive with Bipolarbears - Live, Thrive, Survive with Bipolarbears - text by Kai

#AtoZchallenge2021 – The AtoZ of Mental Health

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(I’ll touch on being 18 this year in another post!)
I’m going to try – again – to do an AtoZ of mental health, though, I’m hoping to focus more on positives, but I’ll be talking about some serious topics too, like bullying, CPTSD and psychosis. But I’m hoping to touch on some things that are more like…tactics to get through mental health challenges.
I’ll hopefully deal with stuff that helps people, but at the end of the day, I think mental health is going to become a topic that we’re more front and centre discussing, just because of what’s going on right now. Finding our new normal is the start – A New Normal will go live on April 1st.
If you’d like to see what else I’m up to, please head on over to Kaiberie.com, and check out the page that lists all the AtoZ challenges for 2021 that I’m doing.

Live, Thrive, Survive with Bipolarbears - Live, Thrive, Survive with Bipolarbears - text by Kai