Under the Spotlight: My Seizures

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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

My Mental Health Story: The Next Chapter – Uni and Worklife

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Part two in my mental health story… we discussed part one, school and college here.

After a lot of hard work and commitment to hypnoanalysis I did it, I made it to University. I even hosted a cocktail party with my friends before I went to prove I could cope around people drinking, and a few nights out to confront my fears of people being out clubbing and being sick. I chose a University a five-hour drive away so that I couldn’t just run home when I got stressed and anxious, I had to stand on my own two feet, and I had an absolutely incredible year. I made some amazing friends, who really understood and supported my journey and I still miss, and I proved to everyone that I could live independently and cope in the face of the things that had previously induced crippling anxiety. Without that year and really embracing the University lifestyle I don’t think I would ever have made it to a place where I could cope with my anxieties on my own.

The problem came at the end of the first year. I studied Biology, which I adored, however the career prospects from biology weren’t what I wanted to do – predominantly it would mean going into research and I’ve always wanted a more person-centred career. I chose to leave because you get one years ‘grace’ for funding, so I can still get funded for another 3 year degree course when I eventually work out what path I want to take – so I chose to drop out as, although hard and rather stressful, it would open up more opportunities to find the career I wanted.

Once I returned home I lost direction as the path I had anticipated being on – finishing the degree and getting a career – had suddenly disappeared and I felt lost and confused as to what to do next. Especially as all my friends remained at university, I felt a bit out of sync and like it was something to be ashamed of because I have always been extremely academic, and a degree was what was expected of me. So, although I knew it was the right decision for me it was still an anxious decision. And, with the hindsight of the identity instability of BPD it explains why this affected me so badly.

As I was suddenly at home I needed to find a job and ended up in retail, purely through availability – which is when the depression started as I started to worry that I would be stuck in a minimum wage entry job and had made a bad decision in leaving. I didn’t have the experience or knowledge to work out where to go next or what career path to follow; and this led to my depression diagnosis. It was predominantly a mixture of the stressful few months, having to rethink my future and being unsure of the future, and fear of what others thought, and I made the decision to go on anti-depressants.

I then found a job as a Support Worker for adults with learning disabilities and epilepsy (definitely an irony in that once the seizures started) and this was where I realised my niche and that working with people really is, as I had always anticipated it being, the place where I flourish. Once I started working in care I began to come off the medication, however a colleague began to pick on my lack of experience and lack of confidence, at which point I chose to remain on the medication due to the damage this had on my confidence and general feeling of wellbeing. Again, I think this was related to the uncertainty of the future and whether or not I would be good at the job. I have always been so petrified of what other people thought and of not being good enough and it has played havoc on my confidence and direction. But I know that I was damn good at that job and, once a few individuals had left, our team really made a difference to those service users day-to-day lives.

Next, looking for some more progression and a higher salary, I took a position in a children’s hospice as a carer and again was in an environment I adored and was comfortable enough in to come off the anti-depressants completely. But by this point my personal relationship had become unhealthy, with a lot of emotionally abusive components; although I couldn’t see this at the time despite friends and family trying their best to make me realise that it wasn’t a good place to be. Between this, my mental health and just the general stress it all created, I started having seizures… initially they were absence seizures and I would just stare blankly into space for a few seconds; it could appear to some so much like daydreaming that I wonder if people would have realised what they were it wasn’t for working in a medical environment. Then when I had some full tonic clonic seizures it was too much of a risk in that environment and, as they couldn’t provide me with enough hours in other roles to continue full-time (we did try a while of being a housekeeper but made a joint decision that I was certainly not a natural and it was best I stopped that for everyone’s sanity) and I had to leave. It was devastating as I adored the job, the organisation and working with children and young people knowing that I was doing something that made a real difference; and that is how I ended up where I am now, but that’s the next bit of the story.

From the start of the seizures, to a diagnosis of Non-Epileptic Attack Disorder took two and a half years, but we can talk about that more in depth another time. All of my reactions to situations, and the desperation to have a career I can be proud of as a way to identify myself, all support the Borderline Personality Diagnosis – it’s amazing how much more sense things make sense in hindsight.

Bee x

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

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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

Under The Spotlight: My Emetophobia

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emetophobia
ɪˌmɛtəˈfəʊbɪə/
noun
extreme fear of vomiting.
It’s ironic that I had planned on writing about my emetophobia today, as my mood has spiralled this afternoon and with it came an overwhelming amount of anxiety…. to the point I’ve just cooked and then thrown away two dinners because I convinced myself they weren’t cooked properly and were too high risk after just one mouthful…. I felt so pathetic not being able to fight the anxiety as I scraped them into the bin…

The emetophobia started creeping in when my anxieties developed at college. I became desperately afraid of vomit and anything to do with it – someone else being ill, myself being ill, someone on TV being ill, even people saying any permutation of the word that wasn’t ‘vomit’ or ‘being sick’ – any other slang term or reference could induce a complete sense of panic and leave me temporarily unable to function.

The emetphobia completely stole my life – I could barely socialise unless it was a completely safe environment and with people who I could trust. I couldn’t do what normal 17 / 18 yo’s did, like going clubbing, and my self-esteem was rock bottom. Nobody thought I’d be able to function normally again.

Another frustrating part about emetophobia is the fact that it induces anxiety and a symptom of anxiety is feeling sick, feeling sick further induces anxiety and makes the emetophobia worse and this is a vicious cycle which means it is hard to get any relief. This led to a variety of behaviours that were all grounded in this inherent fear:

  • If someone was sick on TV I would have to cover my ears and run out of the room until I was sure it was over. I probably looked extremely dramatic clutching my head and curling up in a ball on the stairs still trying to hide from the noise. Despite this we continued to watch medical dramas which, in hindsight, seems a little illogical, but I suppose works sort of like exposure therapy and we could use how strong my reaction was as a way to judge how far I’d come as I started coping better.
  • I had ‘safe’ foods that I knew wouldn’t make me ill and that is what I stuck to, being adventurous, even though I thoroughly enjoy different foods, was a great source of anxiety. I am so grateful that I can enjoy food again but, as today proves only to well, depending on my head space I can still be slightly too obsessive over ensuring high risk foods are properly cooked and haven’t gone off.
  • If I felt sick then I would sit up all night, until my body could no longer resist the exhaustion and fight off sleep. This is because my association with being sick is that it happens in the night – that was when I was sick more often as a child – so if I didn’t sleep then this couldn’t happen.
  • I became addicted to Polo mints because mint is commonly considered to reduce nausea. I could go through multiple packets in a day and, as I was popping them so frequently, had to take to breaking each one into quarters just to make a pack last a little longer.
    • I actually gave polo’s up as a present for my mum’s birthday one year when I was starting to overcome just how severe my phobia was and, to this day, I can’t eat Polo’s without feeling sick (definitely some irony in that). In saying that I have since switched to other brands of mints but my reliance on them does not go as deep, it is only on a really bad day to I find that I desperately need them, the rest of the time they are a ‘nice to have’.
  • I became obsessed with Gaviscon. This started because the GP could not work out a reason behind why I always felt sick. I would drink it straight from the bottle and in quantities greater than recommended, particularly before bed, and carry around sachets in case I was overcome by feeling more sick than normal when out. This behaviour I could justify wasn’t a problem because it was prescribed by a doctor. Again, this behaviour has diminished but it is still rare you will find me without a few sachets of Gaviscon in my bag and a bottle in the cupboard.
  • Digging my nails into my arm and stomach. Initially this started as biting on my knuckle and the pain gave some release to the feeling sick, I’m not sure when the biting became digging my nails in but I’m pretty sure it was because hurting my arm was easier to hide when I was sat in a lecture theatre or out for dinner, particularly from my parents. And I’m not going to pretend I have broken this habit; the scars on my arm, which remains littered with fresh marks during a bad week, prove otherwise.
  • Texting my mum. This is still my number one coping mechanism and must drive her crazy but because she once told me that she can tell that my behaviour differs when I’m genuinely ill and likely to be sick, I started asking her if I was ‘acting funny’ multiple times a day. I will still ring or text her from any situation to ask or just let her know I feel sick so that she can tell me that I won’t be. And thankfully this reassurance is now often the only thing I need to do so that I can control my anxiety.

The fact I managed to get to a point I could work in care with children and young adults for whom vomiting was something I would have to face is something I am both extremely proud of and, when I think about how bad I was, I am still surprised by – there was a point I don’t think any of us thought I would make it this far. I think it does help that, due to the nature of the life limiting conditions of the individuals, it was not a sort of sickness that I could catch and I don’t think I will ever be able to remain completely calm in the face of a stomach bug, but at least it no longer rules my life… except for on a bad day.

But the emetophobia is something I will always carry around with me, even though I’ve come so far, and will still creep up on me and take back control. Like a few weeks ago when a friend came round and said he’d been sick the day before, he wasn’t sure if it was a bug… so I am ashamed to say I followed him around and anti-bac gelled everything he touched when he wasn’t looking… I even threw the pen used away…

Bee x

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My Mental Health Story: The Beginning – School and College

~ Bee x ~ 1 Comment

So, how far back do we look to get to the beginning of my mental health story? I guess we should look at secondary school and college because that’s when there started to be a recognisable problem disrupting my life that I needed to do something about and was the first major period of challenge I faced in my mental health…

School:

I was extremely academic at school and heavily invested in extra-curricular opportunities – whilst working towards my GCSE’s I was also a Peer Supporter, English Prefect, Senior Prefect, Tutor Representative, Head of the Prom Committee and created a Peer Support Website that won the Princess Diana Anti-Bullying Award. I was always striving to be the best I could be and a lot of my anxieties and subsequent diagnoses are reflected in that attitude, the early signs of what was to come. I could never achieve highly enough, even the highest grade wouldn’t be enough because the score itself wasn’t perfect. And, in some ways, this served me well – I achieved a fair number of really good grades – but it is this unhealthy attitude that developed into all the things I still struggle with today. In hindsight, now we know what to look for, I guess a lot of the signs of Borderline Personality Disorder are apparent back then.

College:

This is where things began to get problematic. I went from a big fish in a small pond, so involved in school life that I was completely content and confident, to the tiniest of fish in the widest lake I had ever been in… new people, new subjects, new pressures put on us by the college, and the underlying fear of having less than a year to decide what to do with the rest of your life. And this is where I started to unravel.

The perfectionism I experienced at school was still there, but the environment didn’t allow me to flourish with it like school had. From a series of hypnoanalysis sessions, we established that the development of my anxiety disorder had a lot to do with a few key points:

  • The limited amount of extra-curricular opportunities meant my already unstable identity had nothing to be defined by. I was used to being known as the person who did everything, tried to help everyone and took on positions of responsibility. I was completely lost without them, although I didn’t realise it at the time, and it is certainly related to many of my BPD traits.
  • Without those positions of responsibility, I didn’t have a strong identity, but I also didn’t have as much opportunities to seek reassurance and do things to be liked. This, I am ashamed to say, has always been one of my biggest motivators with anything I do and is all due to my inherent fear of rejection – which I can confidently say I’ve struggled with for as long as I remember.
  • This fear of rejection goes hand in hand with a fear of control which, unbeknownst to me at the time, is one of the contributing factors that led to the most crippling mental health issues of my teenage years: Emetophobia – fear of vomiting.
    • I will dedicate the next post to my emetophobia because it is far too large a part of my life to give just a few lines

I didn’t have a normal teenage life. Particularly between ages 16 and 18 when the emetophobia and anxiety ruled my life. I could barely socialise and that triggered feelings of worthlessness. I couldn’t go to town clubbing or drink with my friends, I was hardly able to celebrate my own 18th birthday, let alone anyone else’s, which is devastating when you desperately want to be a part of it and your mental illness just won’t let you.

It was clear enough to everyone close to me that I wasn’t coping in the real world that my best friends have since admitted that they never thought I’d ever recover enough to make it to University. So, I guess making it is something to be proud of. I was determined to get better. I went to the doctors and asked for help, but they referred me to the Community Mental Health team who sent me to a counsellor for CBT and the patronisation of the ‘tell me where mummy and daddy live’ cliché she spouted angered and upset me in equal measures and I never went back. So, I googled and researched and eventually found another option to try – hypnoanalysis – and thankfully that got me to a place where I started to be able to cope a tiny bit better each week. But we can go into that another day.

As we started to see the changes – which mum and I partly judged in a completely scientific manner through a weekly trip to TGI Fridays after my session to see if my anxieties had reduced enough to allow me to begin to eat a bit more normally – I was able to pass my A Levels and accept my place at University and the next chapter of my life began. But I have never fully escaped the anxiety and, on a bad day, the emetophobia can be just as crippling now as it was then; learning to cope with them better and recovering from them are two very different things.

Read what happened next in My Mental Health Story here…

Bee x