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.