My Mental Health Story: Leading up to a diagnosis [Diary Extract]

Aug 16, 2018Aug 16, 2018 ~ Bee x ~ 3 Comments

After the SSRI triggered hypomanic-type episode (here, if you want an excuse to chuckle at me) things were up and down – I still had days with the warm bubble of over-enthusiasm where I knew I was edging on too high, and day’s that I felt like I was going to crash I wanted to go to the psychiatrist with as much information as possible so I kept track of it all in this record I kept between the episode and the day I got my diagnosis:

23/03/2018 – after the few days of hypomania I woke up feeling fuzzy and butterfly-ey still but this began to dissipate and I started to feel calmer, although the world still did not feel normal. I met my parents at the pub that evening and my mood was still elevated, racing thoughts and chatty.

24/03/2018 – 27/03/2018 – over this period I felt very up and down, between feeling quite hyper and up and a bit lethargic. The first few days were considerably more up than down, this balance then shifted as the week went on and I felt more levelled out. Extremely embarrassed and anxious over my behaviour on the previous days, however, I did feel closer to normal than I had done. I still struggled with my appetite and did not feel overly hungry.

25/03/2018 – decided I wanted to get certificates so looked online and found courses that were officially certified and proceeded to buy 3 (spent over £100 but was also extremely pleased due to the savings which is another thing I am easily obsessed over). These were in subjects I am interested in but have no use for currently. I then became obsessive about completing the first one for 4-5days before losing motivation.
26/03/2018 – had a doctors’ appointment first thing and then went shopping with my mum at an outlet shopping centre. I had already been thinking for a while that I needed a new purse and, when looking round, found a designer one I liked. Whilst in the shop I also saw a bag I liked and impulsively bought it – spending more than I could justify on the bag and purse. Normally I would weigh up the cost implications of this, thinking about it whilst shopping further and returning to the store, but I spent this money impulsively without much consideration, especially as it was a good saving. I also did the same thing with a pair of shoes.

28/03/2018 – 30/03/2018 – although I did not feel normal, with still feeling up and down, I did feel a lot more normal than I had done previously and the changes were not significant enough for me to actively notice.

31/03/2018 – continued to be very mixed in my moods. I was fairly content when I woke up, but then had a period of being sad and anxious in the afternoon where I questioned a friend over concerns that no one would turn up to my funeral. Attended wedding that evening which I found difficult as I had a previous failed engagement and this wedding was with friends that would have been attending ours. I had a period of intensely over whelming sadness when everyone coupled up to join in with the first dance and you have a recipe for disaster. I had 2 glasses of wine however felt the effects of it far more than normal, and I was being more outgoing than usual; I even asked a cousin of the bride, who I had never met before, if he fancied going out for dinner which is extremely out of character for me. This is the last thing I have recollection of…

Information gathered from others due to no recollection: When I was sat down (approx. 22:00) I was talking to a friends’ partner who then went to get her as I was apparently no longer making any sense when I was talking. They then removed me from the room and led me down as I began to have what they believed to be a tonic clonic seizure (two friends at the wedding that looked after me are both in a medical field). I was incontinent of urine at this point so they borrowed spare clothes. I was not particularly responsive, and when I was it did not make sense and I may have had further seizures during this time. They got hold of my parents and drove me to my parents’ house – arriving at around midnight – in the car I was ‘twitchy and kicky’. Once at my parents I was sat on the sofa, but still unresponsive and not very conscious, I then slid off the sofa and was incontinent of urine again. At approx. 1am my parents rang an ambulance as I was still not regaining much consciousness. The ambulance took me to RHCH, in which I had a further event where I made a lot of faces, with my tongue going in and out of my mouth, and my legs shaking and kicking. The ambulance did nearly put oxygen on but we then got to the hospital as they were considering it. In the hospital they did bloods which confirmed my alcohol levels were not overly high and that there were no other substances present. I then became quite agitated and aggressive – taking three of them to put a cannula in, which I later tried to pull out, and I was put on fluids overnight. I do not have any recollection of any of this and my memory does not kick back in until I awoke at around 6am on 01/04/2018, this felt like I was just waking up as normal, except for the confusion about where I was and how I had got there from being in the middle of a wedding. I was discharged from hospital and stayed at my parents – I slept for a large proportion of the day and struggled to eat initially.

02/04/2018 – I felt extremely up and down during this day, feeling fairly content and then very irritable and low. This continued throughout the day.

03/04/2018 – 11/04/2018 – on waking up I felt extremely low and tearful, which continued for the rest of the day and did not ease. I continued to feel low. This continued over the next week and I remained feeling extremely low. It was noted by colleagues that I was actively withdrawing, I struggled greatly with my concentration at work and this did affect my social life and work productivity. I also had periods of extreme irritability. During this period, I was also very paranoid about what people thought and overly apologetic (although this is common behaviour regardless of my mood, so I guess this wasn’t that unusual). I have also noticed that my memory is extremely patchy, unable to recall simple details / events – such as what I have done on certain days, who was present and associated details. I continued to struggle with my appetite, and have had little desire or motivation to eat or prepare food.

On one day, although I am unsure of the date, I did still feel low but I also felt like there was a strange bubble of warmth in my stomach and torso. Not like the butterflies I have experienced, more like a full balloon. This was after a night that I struggled to sleep. This feeling did appear on other days but to a lesser degree and did not last as long

*11/04/2018 –I saw the epilepsy nurse who confirmed that the seizure activity and other physical symptoms I experience are functional / dissociative episodes; cause be Non-Epileptic Attack Disorder (NEAD) (also known as Psychogenic Non-Epileptic Seizures, PNES).

12/04/2018 – I was still low when I woke up, and continued to feel lethargic and withdrawn throughout the day. In the evening I was not hungry at all – even less so than I had been previously – and, although I had been tired earlier in the day I no longer felt able to sleep. I was also extremely agitated over noises from next door which, although I could sort of justify it that they were louder than normal, led to me ringing mum to walk around the house and check cupboards / rooms – behaviour that I have not performed often since shortly after I began living on my own. I watched TV all evening, eventually deciding to go to bed at midnight as I knew I had work the next day. But once in bed I still didn’t feel like sleeping so played on my phone until 1am. I then made myself turn everything off as I knew I had work. I did sleep through until 6am.

13/04/2018 – woke up feeling brighter but slightly detached from the world. On the bus I noticed that I had cramp in my left arm, the butterfly feeling, although not overly strong, was detectable and I was feeling more turned on. Things were more interesting on the bus – I noticed a post box I had never really given much attention before purely because of the colour. On getting to work I felt chattier and more upbeat than I had done the previous weeks, my change in demeanour was enough for a colleague to comment on. But still had a residue of feeling sad sat behind it all and by lunchtime I felt very detached from the world and in a bubble.

14/04/2018 – Safe to say the dissociative symptoms are really coming to the forefront whenever I get more stressed and emotional. It’s been such an up and down week, add in my diagnosis from the epilepsy nurse and nerves about seeing the psychiatrist on Monday and you have a recipe for disaster. I went out for dinner with my best friend last night and thank goodness it was her, because she is one of the few people I actually believe will love me and stick with me regardless. We had a lovely meal, and then went on to a bar afterwards, but I don’t remember getting there. The next thing I know I’m waking up today, at my parents, feeling extremely peculiar. I managed to collapse and have some sort of dissociative seizure whilst out and end up in the back of an ambulance, again. I am now completely riddled with guilt and embarrassment and I really don’t understand why people are still willing to socialise with me.

Then, on 16/04/2018, the appointment with the psychiatrist resulted in my diagnosis of ‘Borderline Personality Disorder’. But we will go into more depth about that next time.

Bee x

Under the Spotlight: My Seizures

Aug 6, 2018 ~ Bee x ~ Leave a comment

Seizures have, without a doubt, been the most disruptive element of my life – more so than any of the Mental Health challenges I’ve had and certainly with a lot more effect on my future.

They started in November 2014 when I was on a night shift. If I hadn’t been working in a medical environment it is unlikely people would have picked up on them as it was the nurses that noticed I seemed to blank out for 30 seconds or so. Initially this wasn’t disruptive to work and purely meant I couldn’t work 1:1 with any child or young person but it did mean I had to give up my driving licence immediately. So many people have said that I should have just kept it a secret and kept driving but if I had had an accident and killed someone knowing that I shouldn’t be driving I would never have forgiven myself.

A few months later however I had two tonic-clonic seizures in my sleep (what is considered a stereotypical ‘fit’) and, unlike the absence seizures that I had been having, this was deemed too much of a risk and I could no longer work on the care floor. I had been planning on applying to study nursing but this was also now out of the window and with it my career path. This is what ultimately led to me leaving the children’s hospice when travelling there was a struggle without a car and they couldn’t offer me fulltime hours in any other role – leaving was heart-breaking and, alongside driving, taking away the career I was planning is the biggest life change that the seizures caused.

Throughout this time I was having tests – EEG’s, MRI’s, I was having scan after scan but they didn’t show anything of use. They put me on anti-seizure medication just in case but it seemed pointless when they couldn’t prove a cause. After 9 months of seizures they stopped and that meant, after waiting a year seizure free in line with DVLA guidelines I could reapply for my licence. I bought a car and for three glorious months had my freedom back but this was short lived as a stressful period in my life triggered the seizures to come back in November 2016 and I was back to square one.

The symptoms have changed since – I was still having the absence seizures but with the addition of neck spasms and the left hand side of my face dropping like I’m having a stroke occurring when I’m stressed – and it is this addition of this which meant in March this year I finally had a diagnosis and an explanation – Non-Epileptic Attack Disorder (NEAD) also known as Psychogenic Non-Epileptic Seizures. Basically just another way my brain copes with stress and it goes hand in hand with the BPD diagnosis but fortunately I haven’t had anything in a few months (touch wood!) It also changes the driving rules and I am now just waiting for the go ahead to reapply for my licence. And once I have my licence I can review my work situation and, with the added freedom, hopefully go back to doing something that I am passionate about.

The seizures have been disruptive of not only my life but the people I love, with my mum having to drive me around everywhere and I am just fortunate that my mum and my friends are all understanding of the fact it isn’t through choice and that they are willing to help me out and put up with it. Even when I collapsed and have a seizure at a friends wedding and again a week later after a nice meal, they call the ambulance and look after me and are still willing to keep socialising. It has certainly shown me just how fortunate I am to have these people in my life. And I always wanted to go in an ambulance when I was younger so at least I can say I’ve done that three times now; one even dropped me home.

Bee x

Waking Dream: Quite possibly the most horrible 40 hours of my life

Aug 1, 2018Aug 2, 2018 ~ Bee x ~ Leave a comment

A waking dream is defined as “an involuntary dream occurring while a person is awake” and, until Monday morning, something I wouldn’t have been able to relate to as a concept but when I awoke trapped inside a dream and completely baffled it led to what is potentially one of the most distressing two days I have ever experienced. If you’ve never felt in then it will sound entirely insane, and I don’t disagree, but turns out it is a real biological phenomenon. So, here is what happened…

The last fortnight I’ve not been sleeping well and was averaging between 3 and 4 hours sleep a night, but it isn’t unusual for me to get into phases like that. Apparently the cumulative sleep deprivation that this resulted in, combined with a couple of drinks on Sunday night, caused my brain to get out out of sync – research since suggests that this is likely to have occurred during the REM phase of sleep. I woke up at 3am on Monday morning and was frustrated as I could tell I was too wide awake and was getting fed up of not sleeping. I didn’t feel right and this feeling persisted as I continued to try to sleep. As I tried to get back to sleep it felt as if I was trying to battle upstream; as if I couldn’t understand why I was trying to sleep because sleeping was going the opposite direction to the direction I needed to go and after three extremely painful hours of this battle I was pleased to hear my alarm going off.

As I got up, got ready and travelled to work, I could tell the world didn’t feel right. At the time I couldn’t work out what was going on – I’ve experienced dissociation before but nothing to this extreme, and guessed I must be experiencing really severe derealization. At work it made concentrating on anything hard and I could tell I wasn’t acting normally. It was a constant battle between the dream-brain and my waking-brain and meant I couldn’t connect with the real world or any conversations. I am just fortunate that I have people I could speak to and ground myself with to stop myself breaking down at work; part of the distress was not understanding why it was happening and therefore not being able to stop it.

It continued throughout the day but, by forcing my waking brain to concentrate I managed to make it through and by the evening I had grown used to the disconnected feeling, although it was still just as unpleasant. But I could barely eat and felt sick with the anxiety and exhaustion that the feeling was creating. I went to bed praying that it would be gone the next day. I wasn’t that lucky.

After two hours sleep I awoke at 1:30 am, feeling the same battle against sleep that I had the morning before, and that was when it clicked. That was when I realised it was the dream world that I was stuck in. I knew trying to sleep was pointless because it was just more stressful and I got up with the aim of distracting myself. I even contacted my poor mother at two in the morning just hoping that explaining it to someone would wake me up from the dream.

Over the next few hours I tried everything I could to break out of the dream world. I tried making myself jump, which would bring my waking brain into control but wouldn’t break me out of it; I googled it, I distracted myself with colouring and television, and I dug my nails into my arm so hard it broke skin in the desperate attempt that pain would help. But nothing worked. Eventually I rang 111 to beg for any medical assistance who got the out of hours service to ring me and sort out seeing my GP, encouraging me to make sure I was seen as urgent when I admitted that I had already thought about what measures I could take to end my life if I couldn’t break out of this feeling.

I don’t know how to make the feeling make sense, but I have never felt so conflicted. The dream brain was mainly in control of my mind and the dream was trying to go in a direction that was opposite to the real world but because it couldn’t it was getting nonchalant and sarcastic. It felt like I was in a strange slow-motion bubble as the real world went on around me and I just couldn’t connect. I could’t even connect to my own real-world body; eating and drinking was something I had to force and although I could tell I was distressed I couldn’t cry unless I managed to shock my awake brain back in charge, but that never lasted long; basically anything I needed to do or connect to in reality was a struggle. It created physical reactions too – my awake brain and real body were in state of panic, with my pulse racing and the pressure of it was building up in my head. It felt like the dream brain was so desperately trying to break out of the containment of a real body and I could feel the pain and tension all over as if it was trying to turn me inside out so that it could get out and go back in the direction that it was desperate to do. I have never felt anything so horrible, and the fact that the world was going in slow motion around me meant that every minute was dragged out and felt like a lifetime.

Eventually it was time to see the GP and the moment I saw her I burst into tears. Having to concentrate so hard on someone in the real world to get the explanation out meant that my awake brain managed to take back some temporary control and that meant I could finally release some emotions. She agreed that we needed to get me to sleep in order to re-synchronise my brain and prescribed sleeping tablets but, to my dismay, said I needed to wait until bedtime to take them so she also prescribed some anti-anxiety tablets in order to reduce my heart rate and reduce the anxiety it was causing in the meantime. This was at 10am and the earliest she said I could take the tablets wasn’t until 6pm; knowing I had to suffer through for another eight hours was the last straw. In the queue at the pharmacy I couldn’t control it anymore and completely broke down. I have never felt so distressed and conflicted, and certainly never let it out so publicly before.

Mum was with me by this point, so we went back to hers. We watched TV and tried to keep me distracted but it was the longest few hours of my life as the conflict of my waking and dream states continued. All day all I could manage was a single slice of toast. I even tried a nap to see if I could at least doze through it with exhaustion and make time go quicker, but it didn’t work. It was funny because, when I could trick the awake state into control, I was overwhelmed with tiredness and emotion, but the second the dream state was back in charge all of that disappeared and I felt oddly invincible, despite the severe distress. Finally, after 40 hours with barely any sleep, 6pm rolled around and, despite normally struggling to swallow tablets, I have never taken any so easily. I got into bed at 6:30pm and was asleep pretty much instantly. Fourteen and a half hours later I woke up and, although having felt slightly disconnected and dizzy as an after effect, I am ridiculously relieved to say that today I feel completely grounded in the real world; I’m even pleased to be able to fully feel and embrace pain.

After a lot of research and googling, I have found other people who have been through similar things and it seems that it is related to something going wrong as you progress through the sleep cycle, something to do with REM Sleep and hypnopompic hallucinations that persist. It also made me realise that my one experience with hash brownies in Amsterdam – which was the previous most unpleasant experience of my life – was likely something very similar, as it felt a lot like it and marijuana affects the REM sleep cycle. I have sleeping tablets for the next two nights to get me back into a routine, and I am already petrified to sleep without them in case it happens again. Keep your fingers crossed for me that I never have to go through it again!

I feel that now is also time to say thank you to the people who helped me get through it. Words cannot explain how horrendous a feeling it was, and it has definitely left my anxiety levels heightened and my mood crashing, so I dread to think what it would have been like without them. Especially P & S at work who help me ground myself enough to make it through, my best friend M who lets me ring him at 2am, B who helped me avoid a complete breakdown in the pharmacy despite having not seen each other in years and most of all my mum… without her to stay with, reassure me it won’t last forever and just generally help me keep going through it I dread to think where I would be. Thank you all.

Bee x

Let’s Do This…

Jul 26, 2018Jul 27, 2018 ~ Bee x ~ Leave a comment

My hands are literally shaking as I write this… this means it is out there… for all I am open about my various mental health struggles, I’ve never put them into such a public domain before and that is petrifying. Add in what my diagnosis entails and the fear of rejection is getting more overwhelming with each word written…

I guess I first started struggling to noticeably struggle with my mental health at the end of Secondary School and going into college, around 16 years old, but in hindsight the attitudes and coping mechanisms developed long before this. At college it became crippling, my anxiety levels peaked and with it came emetophobia – the fear of vomiting. Many parts of my life completely stopped and I was sure I’d never get any semblance of a normal life again, but with a lot of hard work, hypnoanalysis and incredible family and friends I made it through and even made it to Uni… but we can talk more about that journey another day.

With University came a whole host of other issues, triggered by my desperation to live a ‘normal’ life and therefore not taking the time I needed to really recover from my anxiety disorder and decide what I wanted to do with my life, so I took the decision to leave and return home with the aim of going back when I knew what I really wanted to do.

Fast forward six years and my mental health issues never went away, they just got different. On a bad day my anxiety disorder and emetophobia can be utterly debilitating. But we’ll get to that. I ended up in an extremely unhealthy relationship and on antidepressants which I decided weren’t working and took myself off and this, in turn, led to me having seizures… I lost my licence, the job I loved and my independence, and after years of doctors and tests it turns out that they, too, are just another manifestation of my mental health and a diagnosis of Non-Epileptic Attack Disorder (NEAD) on 21st March 2018.

And after having been put back on anti-depressants which triggered a hypomanic phase (actually, that’s a funny story… I’ll tell you sometime), I was diagnosed on 16th April 2018 with Borderline Personality Disorder (BPD). It’s been a whirlwind, it explains so much but creates so many more challenges, and there will only be more going forward with a caseworker and treatment still to come.

So that’s where we are, and why we’re here – I have been writing since before this started and I thought, why keep this to myself? BPD is such a stigmatised disorder, and so much more prevalent than people realise, but how will we change that stigma if no-one is willing to come forward and talk about it. So here I am – we can talk about how I got to where I am, and join me on my journey going forward as I start treatment and face whatever else life has to throw at me… Hopefully we can have some fun too!

Bee x