Poem. Based on a real life story.

​My housemate and I sometimes “play a game” where we choose random words out a book and make a story out of it. Tonight it took me down the nightmare path again..:

I know you’re all talking about me

I know your busy body gossiping ways

What you don’t intimately know

Is my midnight

What I’ve witnessed 

What I’ve experienced

Why I look so haggered all the time

But aren’t they fascinating ,  you ask?

You should have them interpreted, they say

WELL THEY SUCK, OKAY!!

It may be nothing to you but it’s not nothing to me

Never knowing if I’m awake or not

Alive or not

I have no sense of selfhood

I hate my bed

Anything shaped like it

I really hoped it would stop soon

But my brain has retained this way of life now

It’s been too long

People have their happy clappy bohemian yoga ways of thinking I should fix this.

IT DOESNT WORK, OKAY!!

It has no relation. It does not help. It never will

Socialising is physically painful

But I put on that jazz mask

Because I have to

Will I find my four leaf clover?

No.

If it was there it would have shown face by now

There will always be an incident where my subconscious engineers something even more horrific.

I’m sorry if this was depressing correspondence.

It was heavy for me too. 

I'm back...still with the same problem...

 Hi there everyone

So I stopped blogging on here for a few years now because it all just became too much for me to keep re-hashing the dreams and what I was going through, with all the doctors and therapists and medications.

It's now 2022, 7 years since I last posted and am sorry to tell you that I am still in exactly the same position as I was before.

I've been diagnosed as Bipolar 2.  That is my mood though, it doesn't affect my dreams.

What has happened in between?  I was admitted to the psychiatric clinic again as I was taking 10 Zolpidems a night to sleep as hard as I could so I didn't remember the dreams.  I knew that couldn't continue so I admitted myself.  I also realised whilst I was there that I had been seeing the same psychiatrist for 7 years and she was at the point of recommending meditation and yoga to me.  I could see she was out of ideas and didn't want to tell me because I was a cash cow to her.

I switched psychiatrists and my new one is amazing.  Whilst he hasn't had any luck with my nightmares, he genuinely cares and sympathises with me.  I have started Ketamine therapy which has been quite helpful and he finally diagnosed me with Bipolar 2, which explains a lot of how I feel during the day.  It may not have helped my nightmares, but I at least take enough medication now to go to sleep without being able to force myself to stay awake.

Soooo that's my 7 year update.  Nothing has changed.

Oh I did start a nightmare disorder support group on Facebook and its grown to just short of 900 members now.  Not one has a cure.  Not one.  But the support is great.  We also have a WhatsApp group where you can sound off right away if you wake up really upset.  So that has helped me feel less alone in this because for a very long time I thought it was just me.  Slowly going crazy.

Cheers for now.

It's been a while

So I haven't posted on here in ages. Quite a lot of reasons really. It got tiresome re-hashing my nightmares. I went through a massive career and life change. I sold my business. Yeah everything in life has changed so much. Oh, hmm well except for my nightmares. Nothing's changed there. In fact I'm sitting here now typing this through a quarter of an eye as I feel my head drooping but I fight the impending sleep with everything in me. But I have no fight left in me. 

The Stella Dream

Earlier this year, I decided to get myself a cat, mostly to keep myself company at night or in the early morning when the panic and hysteria kick in.  And so into my life came little Stella Jade.  I didn't expect it to happen, but I totally fell in love with my little fur child, I'm attached at the hip with her and hate leaving her alone.  About a month after I got her, I had a friend come and stay with me for a few nights, so I slept on my bed in the lounge with her so she didn't disturb my friend.  As I was sleeping not in my own bed, I was taking an extra benzodiazepine at night to sleep.  The night that she left, I didn't take the pill as I was back in my own bed and so I think the withdrawl hit that night.\

I had a very real, vivid dream (they always are but this one more so than others) that I was in some abandoned building with pot holes and water ditches and man holes everywhere.  Dripping water pipes.  No sign of life.  I had Stella in my arms and I was walking around trying to figure out where I was and what was happening.  Suddenly, someone came up from behind me and grabbed my cat, another person tied me to a wall with an electric fence and switched the power on.  Whilst this was happening the other person put Stella into one of the ditches of water and drown her.  I could see my Stella struggling to get out of the grip of this person but I could do nothing, as I was currently being electrocuted, and could feel it in the dream.  YES THIS IS THE SHIT I ACTUALLY DREAM!!!! Finally I got free and went to grab Stella.  But she was dead.  Just this limp lifeless cat in my arms.  I fell to the ground and started screaming blue murder.  It was at this point that I must have started screaming in my sleep and I woke myself up from doing this.  It was 4:30am and I just lost it.  I cried and screamed and trashed my room, I totally lost it.  Poor Stella was very confused.  I threw up, when I tried to get out of bed I lost my footing and fell and hurt myself.

I have attached probably the ugliest photo I have of myself to this blog post, I don't even remember taking it but found it on my phone later in the day.  I wasn't sure whether to share the photo but I think its important to see what I look like during these meltdowns to try understand what I am going through.  And this, is just one night of it. 

 

Losing Hope Again

So my nightmares have been back for a good month now.  The random 3 weeks that they stopped for were amazing, and gave me a bit of a morale boost but that boost has long fizzled out now.  They are back, and they are so bad I'm struggling to cope.  Scratch that, I'm not coping at all.  Friends and family ask me all the time how I cope and I always say ''Well I have to''.  And that is honestly the truth.  I have to cope.  Because what is my other option?  Suicide.  That is my only other option and one which I am not willing to take just yet because I don't know what happens on the other side, and it could be worse than this.  So I am stuck in this.  Stuck in hell.  No getting out.  My body is aching I'm so exhausted.  I'm seeing double.  I nearly drove off the road this evening because I zoned out from the fact that I was driving.  But my business needs me.  My staff need me to be there and fully present.  So I fake it...fake it till you make it right?  Not working, but no other options.  There are no more doctors who can help me.  No more people to try.  Nothing.  There is no hope.  No nothing. NOTHING.  Just this hell.  I just want it to end.  How can something like this be incurable?? HOW??? And FUCK people who want to talk to me about god.  I don't believe.  No thing or being which I am supposed to love and praise would do this to me.  I know I have a lot to be grateful for, I don't have cancer, no one close to me has died (except one friend a few years back), and I am grateful for that.  All I want is to be the happy person I really am inside.  But that's not going to happen when I don't sleep.  I am so exhausted all I want is sleep, but I also know in my life what comes with sleep so I'm not going there.  I've stopped telling my friends all the time when I am struggling.  They don't deserve to constantly be brought down with me.  If I go down, I go down alone.  They don't deserve to feel bad because I'm suffering.  I just want out of this, OUT.  LET ME OUT!!!!!!!!!!

Little Nursery School of Torture

So as I feared, my break from my nightmares was short lived, 3 weeks, and I have just woken up from a next level nightmare. Wake up, throw up. Luckily I made it to the toilet. I don't care to go into detail but it involved me being forced to pin down my 9 year old brother whilst he was being tortured in various ways by intruders. Him and other children who were all at this nursery school. It went on for so so long. 

I'm done. 

Could this actually be it??

So something great has happened.  I think I may finally have found a solution to the awfulness which is nightmare disorder. When I saw my psychiatrist 5 weeks ago she decided to revisit a previous treatment which I tried, which was Pratsiol. It is an older medication used to treat hypertension (high blood pressure). I have been on it before; but a very low dose. And in combination with a very large amount of other medications.  My psychiatrist decided to give it another go.  A week later when I saw my endocrinologist she prescribed me Trepaline.  It is a drowsy anti-depressant. It seems that in combination, these 2 medications are finally having an effect.  The Trepaline is making me very drowsy at night, thus making me "too tired" to have a pre-bed freak out and so decreasing my anxiety before bed.  The Pratsiol is making me quite hazy in the mornings so sometimes I'm aware that I had a bad dream but I can't quite remember what about, so no waking up shouting, crying, vomiting etc. Also, the nightmares which I do remember, are much more realistic, such as real work pressures which I'm having at the moment. Not these crazy, twisted, torture dreams. But I find myself waking up, remembering the dream, but then just getting up and getting on with my day. Not taking at least an hour to come down to earth from the meltdown which I'm used to following sleep. 

Could this be it?

I'm so so so petrified to believe it may be.  This has been the longest, hardest, most horrific journey which I've ever had to endure. And it will take me months if not years to recover from this. That's if it is actually over.  I don't believe anyone will ever truly have any comprehension of what I have endured over the past 3  years with this disorder, but I really have some beautiful amazing friends who have truly held my hand through it. Klara - always been there for me every step of the way without any speck of judgement for any of my decisions in the way that I've chosen to deal with this. She has truly been my rock during this journey and I can never express my gratitude enough!!

Hannah, Tamsin, Caroline, Simone, Sian, Tara, thank you so so much for everything.

This is finally a happy post. And whilst I'm so hesitant to actually believe this may just be it, I have to hold onto hope. That's what I've done this whole time and it's honestly the only reason I'm still alive today. Even if it doesn't last, I'll at least use this time to actually be able to live. One can only hope :)

The Spaceship of Torture

Last night I dreamed I was on a space ship that was headed one way for Mars.  I panicked and freaked out because I didn't want to go on it.  I wanted to go home.  The people on the spaceship told me I can go back but then first I needed to go through the torture chamber on the spaceship.  I saw a little sign that said TORTURE.  I pressed the red light and stepped inside.  Suddenly, a machine grabbed all my limbs and started pulling them apart.  I felt the pain in the dream.  I was then shoved into a hole that was too small to fit my body so I couldn't breathe properly and was being squashed.  I again I felt this very real pain in the dream.  This dream sounds short but it was incredibly dragged out.  I just don't have the energy to put all the details.

The Endocrinologist Results

I took a while to write this post since I wanted to calm down from the whole experience first.  I was away in Hogsback at a conference for a week, during which I had an absolutely petrifying nightmare about men chasing me with sticks wanting to rape me, whilst chanting the whole time.  I woke up by sitting up suddenly, to see my friend who was away with me shouting my name trying to wake me up because I had been crying in my sleep.  It was 04h40 in the morning and that was it for my nights sleep, and I had 8 hours of conference activities to attend that day.  So at this point I was really excited to get back to get to the endocrinologist for my results.

Monday came and I was filled with dread because I knew it was going to be bad news either way.  Either, I'd be told I had some horrible condition, or I'd be told everything was fine and then still be left with no answers.  Turns out is was the latter.  The doctor slowly went through each thing that they had tested me for, which led me to believe they had found something because otherwise I thought she would start with ''great news, no problems on your blood work.''  But no.  She slowly went through each thing.  The only problems they picked up were that my Vitamin D levels are 18, they should be a minimum of 30.  And in my diabetes test, the second sample of blood my sugar was slightly higher than expected but ''nothing to worry about.''  I literally fell to the floor sobbing.  My doctor handed me a tissue and tried telling me it was good news because ''Cushings Disease in itself is a nightmare''.  This didn't make me feel any better.  I don't care what it is, I want to know what's wrong with me and I want to do something about it.  She then asked me when I'm seeing my psychiatrist again, so I knew what she was really thinking.  I left with a prescription for Vitamin D supplements, ran to my car so no one would see I was crying and once I got into my car I just broke down.  It took me 40 minutes before I felt able to drive.  I called my dad to tell him the results but had to call him back later because he couldn't hear what I was saying I was so hysterical.

So where to from here?  I don't know.   I honestly can't think of one more doctor I could possibly try.  So this is why I was just so so devastated.  Because I honestly don't think that I have any more options to try, and I am in a lot of debt with all these doctors bills.  The initial endocrinologist consultation and then the follow up cost me R2400 and my medical insurance only gave me R425 back.  Luckily they covered all the pathology. 

It is an extremely scary thought that at 26 years old I am faced with living (if all goes well) another 60 years...with this nightly terror.  Its hard to wrap my head around it, really.  I don't know what I can do now.  I know I will not give up in my search for answers.  Even if it takes me my whole life, I will find the cause of this, so I can at least help someone else with it.

Kidnapped in Uganda

I have a friend who lives in another city who is in a wonderful marriage, they've been together 10 years and married for 4 and I've never seen a more in love couple before. They have a little daughter who is almost 2 and she is 7 months pregnant with a boy. 

Last night I has a very disturbing dream. I dreamed that I went to see her and she was doing a TV interview and her and her husband were saying that their hope was that the baby wouldn't be born deformed.  I was very confused but then slowly information came together. I heard that she had gone on a trip to Uganda and had been kidnapped by some group of pirates there. When they got to the prison (and footage of this was shown) a lot of the men were tied up and naked and were being repetitively raped by other men. The woman were being chased by men who were going to be raped to. My friend was there. It then dawned on me that this baby that she was pregnant with was not her husbands but one of her kidnappers.

The Endocrinologist

I went to see an endocrinologist yesterday.  I was there for almost 2 hours.  In short, she is concerned about 3 things.  Thyroid function, possible diabetes and the possibility of Cushings Disease.  Cushings Disease was the one she was most concerned about.  She asked me a whole lot of medical questions and then gave me a fairly extensive physical examination.  She has ordered a fair amount of pathology work to be done which involves me taking urine samples to the hospital for the next 2 days and then on Thursday evening I can't eat after 10pm, then at 8am on Friday I have to be at Pathcare, where they will be performing 4 seperate blood tests on me over the span of 2 hours, in between which I will have to drink glucose syrup on an empty stomach.  I have a friend who has had this test before and said she felt really sick for the rest of the day.

This entire journey I have been really desperate for an answer, but I'm scared of this diagnosis.  It would involve surgery, medication and potentially radiation.  15 in 1 million people have it.  How crazy would it be if all this time I had such a rare disease.  However, I have had so many doctors tell me that ''you have this'' or ''you have that'' that I'm trying not to think about it too much.

Of course last night I had repetitive nightmares about blood tests so I feel like I've already had them.

Goodbye My Friends

This dream I had a while ago, whilst I was at the Boom music festival in Portugal.  It was on my first night there and I was as happy as could be so I was so confused that I would have such a disturbing dream.  Two of my best friends in Cape Town (I prefer not to mention names on my blog for privacy for my friends) came and sat me down and told me that they were going to be moving away to Namibia.  I was really really sad about this because I see a lot of them and I was devastated that they weren't going to live up the road anymore.  I said goodbye to them and off they went.  In Namibia, they lived in a high rise apartment which somehow I could still see in my minds eye, even though I was still in Cape Town.  I continued with my life but was very sad all the time that they were not around but I continued to be able to constantly see (in my warped dream state) this high rise apartment block that they were living in.  One day, the apartment block slowly - like in slow motion - began to crumble to the ground.  Slowly it fell, and somehow I knew that my friends were in there.  As if to stick with the theme, I slowly started to try to scream in horror, but the scream wouldn't come out.

Whilst trying to scream in the dream, I managed to scream myself awake back into real life.  It was just before 6am and I'd likely disturbed all the people in the tents around me.  I opened the inside zip of my tent and just stared out at the party.  I had to wait 2 hours for my friend to wake up at a normal time, whilst all I really had to contemplate was this dream I'd just had.  I panicked because I still had 6 nights ahead of me at this party, knew that it was going to be taxing on my body between the heat, dancing, constant music and uncomfortable mattress and really stressed out about this being added to the mix too.  Of course, the nightmares continued for the rest of the party, but this was definitely the worst one. 

Just another night of horrors.

I'm going to try piece this one together through my tears because I can't stop crying this morning after what I just experienced. I was out in some sand dune with pretty much everyone who was important to me in my life. Friends, family, parents etc. I was sitting on the dune and all these little light aircraft planes were flying past. Suddenly, one exploded in front of me. I realised it was carrying my dad. Slowly the plane disintegrated into sand but my dad's head flew out the plane and slowly distorted as it fell to the ground. Quickly someone ran to me and told me I had to make little planes for everyone to fly in and right either A B C D E or F at the top on the wings. Then I'd give each of the people who were there (my loved ones) a plane to fly in and then I had to choose the letter of which plane took off.  I did it quickly as I did not want the others to die as well. Once I started calling out the letters, the planes began taking off. I then glanced to the left and there was a mean looking woman sitting against a wall glaring at me. Everytime I called out a letter, I'd glance over to her to get approval but she would look at me, give me some evil type grin and shake her head, then I'd look forward and the same process would be repeated with what happened to the plane my dad was on. Each plane as well near missed me when crashing so I was sure I was going to fire as well. 

Over and out, just another night in my life.

You have HIV

This was a strange dream. But one that left me waking up screaming my lungs out. I was exhausted last night as I've just come from 22 hours of travelling back to South Africa from London and so didn't think getting to sleep would be a problem. Well I dreamed that I went for my annual Gynae check up and I then got a text message from the doctor saying HIV test - positive. The pack of the screen was red. The rest of the dream was pretty much me just continuously screaming, breaking down, crying. Until I eventually screamed myself awake. 

I know I don't have HIV, as a South African it's just one of those things you get tested for regularly. So why I would dream something like this is beyond me. 

Having this nightmare disorder has really started to screw with my perception of reality as well. I've found when bad things happen to me in real life now, like when my wallet got stolen, I ask friends to pinch me or slap me because now I'm always just convinced I'm having a nightmare. Not being sure whether you are awake or asleep really makes you feel like you're going crazy.

Thanks for taking my holiday

I've been on my long saved for holiday of a lifetime for the past 3 weeks, staying in the UK, Portugal and The Netherlands. I've had a wonderful time, being back with my friends, sightseeing, doing things but it's been slightly tainted by one thing. My nightmares have been worse than ever whilst I've been here and of course this has led to a low mood as well as lack of energy to do the things I came here to do. It is incredibly frustrating when you have spent thousands of rands on a trip of a lifetime for yourself and it is spent dealing with this shitty disorder. It is my 3rd last day in London and I've been awake since early as I was having terrible nightmares and then I decided I had no desire for another one so I just stayed up. This means that during my great plans I have for today though I won't have much energy and will be tired and probably just want to come home. I'm just over having this in my life. Fuck you nightmare disorder. Fuck you.

The roads I've walked to find an answer

The Doctors I've Seen , medications I've taken and Tests I've Endured In The Hope of Finding Help:

- a natural energy healer

- a clinical psychologist

- an international sleep specialist

- a 24 hour poly sonogram done by the sleep specialist

- thyroid function testing done by my GP

- melatonin

- 4 different anti-depressants

- anti psychotics

- benzodiazepines

- reiki

- an EEG

- an MRI

- full blood count

- hypnotherapist

- homeopath

- sleeping pills eg stilnox

- dietician

- sleep specialist in Durban

- weekly councelling with a social worker for 8 months

- 3 weeks in one of the countries best psychiatric clinics

- dream interpreter

- TRE practitioner who I saw for 6 private sessions

- TRE practitioner also did an energy clearing

- psychiatrist

- neurologist

- 24 hour EEG with video monitoring done by the neurologist

- ER specialist after I ended up in casualty with a twitch in my arm that wouldn't stop 

The Voice Recordings

As mentioned in my previous post I have needed to start taking sleeping pills some nights.  One of the main 'symptoms' of taking a sleeping pill is that you don't remember much the next morning of what you did after you took the pill.  This morning I was eating breakfast and playing around on my phone when I came across some voice recordings which I had made for the past few nights.  They were all done more than an hour after taking my sleeping pill and were extremely distressing to listen to.  I was crying in most of them, wondering why I still couldn't fall asleep, or some of them saying I was totally exhausted, but still trying to fight the sleep off.  I've started reading a book on Lucid Dreaming and one of the mean things I need to do to try and achieve lucidity in my dreams is keep a dream journal.  I decided to do voice recorded ones as it is easier and I found these recordings amoungst the dream ones. 

My friend Benzo

I haven't written in almost a month because I wasn't sure if I wanted to put the last month's events out there on the internet.  But in the name of keeping this blog real, up to date and using it to try and get awareness of this problem out there and hopefully find somebody out there who can help me, I will update.

After I saw the neurologist, he prescribed me 3 Urbanol a day.  Urbanol is a benzodiazepine, a rather addictive psychiatric medication.  I realized quite quickly that they weren't working but continued to fill my prescription 'just in case.'  I didn't see the harm as I was prescribed this medication anyway.  About two months ago, I reached a complete and total breaking point.  Spending every night - the two to three hours before bed - going bezerk in my house, crying, screaming with frustration, fighting sleep to the death - this was no longer an option.  I can't go through that every night of my life, then wake up and go to work as if nothing is going on, then from lunch time already be filled with dread about the impending freak out followed by night of demons coming to visit.  Waking up and throwing up, sometimes for up to two hours, was no longer an option.  So, I started taking benzodiazapines - or benzos.  Since I have quite a collection of medication built up from about a year of psychiatric treatment, I just took whatever I felt like every night.  I have never taken a dangerous amount, just enough to zone me out so that I don't have the energy to have a freak out and therefore just go to bed because I'm exhausted.  It doesn't stop the nightmares, but it stops the pre-bed freak out, which in itself is often way worse than the actual nightmares.  I have also taken sleeping pills some nights, but since I sometimes get 2am calls from work and the Stilnox makes me completely switched off, this isn't really something I want to take as I need to be able to get up in the night if the need arises, so it just stresses me out more to take them.

I know that this is not a sustainable or healthy option but right now it really is the only way I can operate.  I know that it isn't in my best interests long term but I'm sick of trying to deal with this long term.  My parents think I may have a thing called Gut - Psychology syndrome where poor gut health causes psychological problems.  I am trying my best to change my eating habits, get to the gym more frequently and have started taking daily pro-biotics.  However that's not going to help me TONIGHT.  Tonight, I want to sleep and not freak out.  It does worry me that I will develop a dependency problem on these pills, in fact I probably already have one, but I see it this way - of all the problems this nightmare disorder could have caused, this is pretty mild. 

I am taking steps to try find more solutions to this problem (although there are very few steps left to take).  I am going to see an endocrinologist in September as I want to check if I have any hormone imbalances.  I have started trying to meditate every evening, even though I find it very difficult and often get emotional.  The meditation has also led me to develop an interest in Buddhism so I am spending time reading up on it.  This disorder has caused me to majorly stray from Christianity, the religion which I was brought up in, as I don't see a God of love doing this to his creation.  Whilst I don't think I'll ever become a full blown Buddhist as I can't see myself committing to some of their core beliefs for example re-incarnation (once is more than enough for me!) a lot of their teachings are useful, calming and could have a positive impact on my life.  I am also going to where I call home - London - for a month at the end of July.  This is where I am just purely, blissfully happy and I am hoping that this trip helps a lot with this problem.  I'm hoping that I won't need any sleeping medication whilst I am there and that will help the problem a lot when I get back.

So that's where I am right now.  I'm still not even feeling sure about writing this post but this is my life and if someone out there has the same problem as me - I want to keep this blog as much of a realistic reflection of my life as possible. 

The end of life

In the midst of all this disaster with my sleeping, I have lost my way religiously completely. One thing that scares me is death though, because what if I "pick" the wrong religion and then I burn in the fires of hell? Well, last night I was with some friends, 2 kids I used to au pair and one of my housemates. We were all chosen to be shoved into a room because it was time to end all of our lives. I became petrified because I didn't know what was going to happen when I died, because I hadn't "chosen" a religion. I began praying frantically, then doubting that that was what I needed to do. At this point in the dream I  remembered that I have nightmare disorder and started wishing that this was a nightmare and that I wasn't really dying. Little did I know I was but people around my that I knew and loved started laughing because they all knew where they were "going" because they had their religious beliefs. 

Woken up at 07h05 after taking a sleeping pill and too scared to go back to sleep. Feel sick to my stomach as usual.

The stadium

I had a friend who worked in the Cape Town stadium and I was good friends with her partner so we decided to to eat dinner up on a hill and then wait for her partner to finish work and come and join us. As it approached the last 5 minutes of her partners shift and we knew she would still be in the stadium, suddenly the whole stadium lit up, incredibly loud music started playing and the whole stadium started bouncing around the city of Cape Town, it was just bouncing and twirling like a ball and me knew she was in there and there was no way she could be surviving this.  An eerie quiet came over the city and we knew that everyone in that stadium was dead.