The Journey of Boy22 - medical PTSD - *Trigger Warning*

[Boy22]

Hi all,

I started a blog in January of this year as I began to reconnect with people and telling my story over and over simply re-traumatised me. So I wrote the blog and instructed people to read it prior to our catching up. My partner Andy has been sharing it with many people as well. For some it is an echo of their own experiences and they tell me my Journey makes them feel validated and up lifted.

So I'm not sure if its the right material for a recovery journal as per the guidelines, but documenting what happened has been a key part of recovery for me. I have taken my first blog and sanitised it of some identifying details and I hope the moderators consider it appropriate and the members of our community find it useful. I will add some of my other blog posts following this.

*Trigger Warning*

The Journey

As I am slowly reaching out and reconnecting with my friends I am needing to explain repeatedly how I am, how I got here, what's happening now and where is this all going? All very reasonable but the retelling is painful in itself and as pain is the central theme of my journey I wish to lessen it by recording here the essential questions.

Pain.

Pain is a brain event. We know what "turns it on" in most cases, but we do not understand how it turns off. We do know some people are born without the neurons that transmit pain messages to the brain, and they never experience pain. We also know in some people pain (particularly back pain) gets turned on by a physical event, and that the pain never turns off for a prolonged period.

My Pain Journey.

I was born with a cleft lip and palate. I was the third son to my parents with a cleft palate, so they knew the drill pretty well by then. At that time the plastic surgeons were delaying the first repair until the baby was 6-9 months  old so that the baby's mouth was bigger and a bit easier for the surgeon to work in. The plastic surgical unit also had a policy that the parents were to be separated from their child until 1-2 days past the surgery so that they were not upset at how their child looked.

Mum knew what was going to happen. She knew that I would know she wasn't there and that I would cry - risking tearing apart the sutures that had been carefully placed to achieve a good cosmetic and functional child's mouth. She had nursed two children through this procedure previously, she wasn't going to be upset by my appearance. However Ward Sisters rules were not to be over-ridden no matter what.

So it happened. I cried. I cried in pain and my mother was not there to console me. I tore my sutures. I was then taken back to theatre where the frustrated surgeon did a rush job resulting in a poor cosmetic outcome. Thus I had two further trips to theatre whilst I was still a toddler in an attempt to achieve a better cosmetic outcome.

The period of ages 2-3 years is a critical period in which the child forms the idea that they are a separate being to the world around them, and that there are other beings who may come and go. They learn that they can influence the behaviour of others around them. Unfortunately during this period I suffered painful surgeries, and learnt to use my brain to suppress the pain messages so that I could get on with my life.

One of my earliest memories was of a nurse threatening to smack me if I did not stop crying. So the message was clear - don't verbalise your pain or you will be punished. There were many other such messages. When it came time to have the sutures removed (a painful process) I was told to be still and stop wriggling as that was only making things worse - the message being if you are good and still this will hurt less.

I learnt my lessons well. By the time I was 14 I endured a 75 minute procedure under local anaesthetic in which the surgeon removed a tooth, cut a trench hole into my palate to locate the adult tooth that was in the wrong place then try to put it in the place now vacated by the removed baby tooth. Hmmm, hole too small. Chisel bone out. Place tooth and suture everything up. At the end of this procedure the doctor and nurse both complimented me on how well I had handled what they had done to me.

Yes, be good and deny the fear and the pain and people will be happy and say positive things to me. Unfortunately they lied. The better you are at denying the fear and pain the more terrible (painful) things they do to you!

So I have for a very long time been using my brain to suppress pain. It is still doing it today. It has never received the message that things have healed and that the pain has stopped. For as far back as I can remember if I cut myself whilst preparing food I only notice when there are smears and spots of blood  - here, there and everywhere. Sometimes there has been so much blood I have had to wash my hands in running water in order to find where the cut is. There was no immediate pain signal, or rather there was but my brain is already suppressing pain signals so one small slice is nothing compared to the rest of the pain it is working on.


My PTSD Journey.

I'm sure many of you can already see where I am going. I talked above about fear. I have early memories of listening to the footsteps of the nurse coming down the corridor. "Are they coming for me, what painful things are about to happen?" I learned to suppress my "fight or flight" response.

There is also one very unfortunate event. I was eleven and we were at Middlemore Hospital seeing the orthodontist who was beginning planning for the braces he would fit to my teeth. A mould was going to be made so that he could continue to study it in his planning, and also provide a marker from start to finish. The nurse mixed the mould material with too much water, so that when she placed the mould tray into my mouth it began oozing down my throat and choking me.

I tried to get her attention and was rewarded with a stern "Be quiet! Lie still!" Finally, as my airway was about to be overwhelmed by the oozing mould mixture and I would die of asphyxiation, I forcefully vomited it out. Where upon I was told off for making a mess! I protested. The orthodontist intervened and shooed the nurse away. He helped clean me up and explained the error that had occurred. He reassured me that he would do it right and asked me to lie back in the chair whilst he did a new mould mixture. Fight or flight? I had no choice, I could do neither.

So slowly over the last several years as my brain has finally reached saturation point I have been having moments of meltdown - total fear of what painful thing is going to happen. There isn't any actual painful thing about to happen. My brain is using triggers it learnt during my childhood and applying them to events that are totally disconnected. There is no threat of danger but my brain has lost track of present day reality and is applying past learned experiences.

Fortunately I had the good experience of meeting an amazing man who has been a cardiologist, a GP and now a psychotherapist. We have been working together and it has been because of his help that I have held it all together and put on a brave face and carried on working for as long as I did. And now, given where I am in my life, I am looking forward to gathering up some energy to confront some of my demons and vanquish them rather than letting them rule my life. This will take some time, but I do now have the time to address them.


Where Am I Now? (this was written in January 2018)

I am currently taking 17 pills a day. Most of those are aimed at trying to calm the pain nerves down, and they are definitely helping. My psychiatrist has treated people like me, traumatised from multiple surgeries at a young age. He has gently guided me to discover for myself what is important and what is needed. He has agreed with my decision to consider myself retired. Whilst he expects improvement he agrees that this will take years.

So I am back to being a patient again. I am fortunate that I have income protection insurance so that money is not a worry for me. I am also blessed in having a loving and supportive partner in Andy.

We are planning to get married this year on the 25th anniversary of our first date (May 2018 yay!). This will be a very small event with less than ten people invited as I simply could not cope with more. Not even family members of Andrews and my family have been invited. My apologies to them and you. Perhaps we may find a way to have a few small gatherings in the months following our wedding so that some of you can celebrate this milestone with us.


The Future.

The future is unknown. I am taking my time to slowly heal and perhaps one day become a more useful and functioning member of society. I have overcome an awful lot to have achieved what I have already done and am relaxed in knowing that I can continue my journey, take the time to heal, and then discover what comes next.

[Boy22]

The Narrative

I have realised that some information is missing or incomplete in my post: "The Journey". I have travelled a long way to get here and have a team of extraordinary people helping me. So much of what I have learnt about myself through working with these people leads me to assume and not always convey enough information for others to understand my journey. Here, in "The Narrative" I will try to add a bit more of an explanation.

Additionally, in consultation with my psychiatrist, my nortriptyline is to be increased from 75mg to 100mg as there remain indicators that my pain levels are still too high.

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As stated in "The Journey" I was the third son born to my parents with a cleft lip and palate. Cleft palates come in just a few varieties – mine fell into the worst category being called a bilateral cleft lip and palate.

As you will have already seen in my last post my initial surgery was delayed, I cried and split my stitches and an irritated and rushed surgeon did a poor redo. This resulted in my having a total of five corrective surgeries by age six. At that time the only pain relief options were aspirin (orally) or morphine by injection. Unfortunately I also markedly suffer from one of the side effects of morphine, nausea and vomiting, thus necessitating further injections of anti-emetics.

Place yourself in a child's mind for a moment. Are you in pain? "Yes", rewards you with pain in the form of an injection, often multiple injections. The pain relief comes later. A child takes little time to learn that saying "no" is a more preferable option – particularly if you have learnt to suppress the pain with your brain.

The downside to my having learnt to control (or deny) the pain is that my brain was (and still is) working hard to suppress any pain inputs and thus never received the signal that the pain in my face had stopped. So for nearly fifty years my brain has been tasked with stopping the pain, being hypervigilant of signs that more pain is coming, learning my lessons at school, becoming a medical professional, working and developing my skills along with managing a team of staff with their individual needs.

My brain said – "Enough, I cannot do all this". So I have stopped and am taking time to address the things my brain no longer needs to do. I am addressing the pain. I am addressing the hypervigilance. But this will take time.

Along the way I also needed grommets inserted. A complication occurred that meant I lost 80% of the hearing in my right ear along with disrupting the canals that convey information on which way your head is currently tilted. Fortunately you have a second one on the other ear. If such a complication occurs to an adult they usually end up suffering disabling attacks of dizziness at unpredictable times, often resulting in their loss of employment.

Yet again, as a child I learned to compensate and control the good versus bad inputs my brain was responding to. So along with controlling the pain my brain learnt how to compensate for the loss of balance signals from one side of my head along with suppressing attacks of dizziness. I do remember most nights of my falling asleep at this time were accompanied with a sense that I was spinning backwards continuously.

There is much else that has happened to me, I am uncertain what to tell you all and I don't wish to wallow in the muck. There was the bullying at school. Coming out as a gay man. Having senior lecturers at university pull me aside in stairwells and other out of the way places to tell me to go back in the closet or I will have no career.

I have fought against so much to survive. But I am a survivor and I can find my way out of this current * hole. The thoughts and wishes shared by my friends are helping bolster me up at this time and I thank you all.

[Three Roses]

 A safe  to you, if it's okay. I'm sorry for all you've endured.

[Boy22]

The Power of the Narrative

Through luck and my good friend Joan I found Pete Walker and his book "Complex PTSD From surviving to thriving". I had skim read it once, when in a moment of boredom I decided to open it and start part way through at a place that felt relevant to me. I was quickly upon his chapter "The power of narrative".

It was pleasing to read in what I have blogged so far shows I am on the road to recovery, but it was frightening to read some of what I have yet to deal with. Indeed most of his book documents areas of my life, my emotions, my relationships that are in need of further work.

Frustratingly, in some ways, the book is written for survivors of parental abuse – as the writer himself is a survivor of such abuse. Whereas I was fortunate to have good parents, not perfect parents by all means. Most of my abuse was at the hands of the medical system.

So why did I become a doctor? Somewhere along the line I learnt that when "The Doctor" said – "No. Stop!" – then that was to be obeyed. There it is, plain and simple, I became a doctor to get control back over my own body. And in the last several years I have experimented with that control by having further surgeries. Having gone through those procedures and felt better for it is probably what led to the door opening on pandora's box.

I now had control over my body, and my mind was screaming out for healing. At this point (as in near enough to now in real terms, not the point at which my mind was losing the plot) my insurer asked for a second psychiatrist to review me.

The encounter was an intense and challenging one, though for the larger part of me the psychological defences I developed as a child were strongly to the fore. Meaning that the present self was divorced from the real me, I went somewhere else pleasant and devoid of pain. "I have become comfortably numb." A line from Pink Floyd The Wall Album.

Fortunately Chris (the second psychiatrist) allowed me times to be fully present and give me some of his insight. From this stemmed more foraging into Pete Walkers book and a second book by Suzette Boon about dissociation in the face of trauma. I am learning more and more about myself.

On my blog is a pictogram which I cannot workout how to post here, never mind. A text version follows.

The Frontman
A pleasant friendly fellow who will largely be cooperative, with a tinge of hypervigilance and the defender on hand.
The frontman appears on first meeting someone, before establishing trust, and more importantly takes over in times of STRESS.

Assisting the frontman and switched on AT ALL TIMES is
HYPERVIGILANCE, monitoring always for the preprogrammed triggers that are signs of imminent PAIN.

Also assisting the frontman and switched on at all times is
THE DEFENDER, a prickly acerbic character that will start with a "back off" warning and growing from there if needed.

Someone, as yet unknown, is carrying the PAIN.

I have found my "Incredible Hulk" though I do not know him well, when he appears I dissociate and believe that I have been pleasant and direct in stating my needs.

I have now had my first glimpses of the small boy in pain and angry that no-one is listening to him.

Lastly and without doubt not the least is the REAL ME.
I am:

Friendly
Fun
Cheeky (Monkey)
Interested
Connected
Caring
Empathetic
Knowledgeable

Perfectionist

HARSH
Inner & Outer voice

Vulnerable
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Suffice to say I continue to make progress. The journey is ongoing, my thanks to those who walk along side me and hold my hand.

[Boy22]

Thanks for the hug Three Roses. Without all that I have suffered I would not be the person I am today. My Journey, right from childbirth, has given me some incredible strengths and talents.

Yes, right now life is a total struggle, but I know there is a way forward and I am working on that along with the assistance of some very talented therapists.

[Boy22]

I feel the need to write something here. Something that is not for my blog, which is for other people. Something for me to continue my journey towards healing.

I has been a difficult and confusing week. I had had some major difficulties with my case manager for my income protection insurance. Somehow she managed to find every possible key to triggering me and was playing chopin upon those keys. I endured six weeks of *, including upping my meds ( with permission from my psych). Then I spat the dummy emailing her manager stating I was unwilling to work with that person any further.

A new case manager was assigned and I was worried about what had been recorded in my file that might cause my new case manager to act in the same way, so I requested a full copy of my file including all emails etc. This has been done for me and I received that file yesterday.

Fortunately none of my fears were to be found in the file. But there was some challenging stuff. The biggest of which was the gulf between my reality and how my various therapists have reported to my insurer. They paint me as a competent and capable person who just needs a bit of a push to get on with work and life. Fortunately one of my therapists did hear my distress and did intervene to get the insurer to back off on their plans of a return to work programme and instead got them to agree to funding some of my therapy with an additional therapist and an exercise physiologist.

I have met with my new therapist and things are going well. Progress is being made. I have yet to meet with the exercise physiologist and will be intrigued to find out what plans they come up with. I already get in a cycle ride most days - rain or shine. And I have been doing yoga classes.

I have already put in a lot of work into getting better and it remains unacknowledged by my therapists and thus also by my insurer. There, that is it. That was what was stuck in my "mid-consciousness" causing me confusion. I now have some clarity into what I need to do next to change the way I am viewed. Not as a problem to be fixed but as a person who has already done a lot of work on myself, and that I recognise and appreciate the extra assistance I am being given. That acknowledgement needs to go both ways.

Have a good weekend all. I am pleased to have found this place.

Boy22

[Boy22]

(Ten thousand expletives deleted!)

I am just back from a bike ride. During which I continued to process my reaction to my insurers file on me.

I realised that part of the problem is that I put a large effort into getting ready for each consultation. Grooming, attire, being rested, being pleasant and engaging. This is all a script from my childhood encounters with medical events, and because I continue to follow that script now my therapists don't fully understand where I am at. So they have not given my insurers a full picture of me.

So my insurer has recorded in my file that perhaps I have made a "lifestyle choice" to be claiming insurance. (Expletives in the plural deleted!)

Seriously? Come live my life from embryo to here and tell me how much this is a "lifestyle choice"!

So they (the insurer) are not listening to me, are not believing me, re-traumatising me.

And so my circle of harm is complete.

[Boy22]

I am pleased. I had a horrible build up to my session today where all the conflicting scripts and needs I had were waging battle inside me.

Incredibly I managed to stay present whilst giving each of them the space to come out and be heard. My therapist and I circled round and back through various themes and despite starting the session in tears we ended in laughter. He heard my needs and acknowledged their validity and agreed to be my advocate with the insurance company (and gave me some sage advice on the best way to deal with them).

[milk]

‘ My therapist and I circled round and back through various themes and despite starting the session in tears we ended in laughter.’

your hard work is coming through in the quality of the connections (moments) you make - enjoy :  )

[Boy22]

Hello to anyone passing by.

Met with an exercise physiologist yesterday who said I'm basically doing all the right things, she may come up with some fine tuning tips. Nice but frustrating to hear. She actually asked questions and listened to the answers without making assumptions. So I will hear back from her in a week or two.

And this morning I am waiting for an electrician to arrive and do some work, and the council have decided to start road works including using a concrete cutter just 50m up the road! So my nerves are more than a little frayed at the moment.

So I popped in here. Hoping to have some kind words for some on here. I honestly dont know how the regulars do this. Reading all this horrible stuff upsets me. I am so lucky in so many ways and yet my (no) life sucks. I have a sense of wonder bordering on bewilderment as to how some of thr brave people on here keep on going.

Bravo to you.

[Boy22]

Well, what an interesting session I just had with my psychotherapist. We spent quite some time on how to provide empathetic care to my inner child without being sucked down into the fear myself (as the present adult).

And we then went from a childhood trauma incident up through the years looking at how I had developed certain necessary and appropriate tools to cope with life and on to how I had gathered around me the perfect storm to send me down to the depths at which I currently am.

All with the expectation that I can and will find a way out of this ... my journey continues

[Jdog]

Your courage continues to inspire me, Boy22.  And I think providing empathetic care without getting drawn into the devilish parts is always tricky, whether it's your inner child or even the adult you that requires the empathy.  Such a balancing act. 

I'm glad you share your journey with us here.

[Boy22]

Thanks jdog, I'm glad I found this place.

[Boy22]

Hi Behea1thy,

I sat down and wrote the following in Word so that I could think carefully upon my answer to your question.

Here is essentially my daily plan, with some variations throughout the week.

Number one, take frequent rests – I try to avoid tackling a task that is going to lead to exhaustion. My rests are in my bedroom with all doors, windows, curtains closed. Depending on my energy levels I often fill the rest time with playing on my Ipad, but at times I need a nap, or just to lie quietly with my eyes closed. If I am away from home I usually have with me an airline "eye mask" and my noise cancelling headphones and I usually retreat to my car for the rest. At times I will do mindfulness exercises.

Number two, I try to get some exercise every day. My preferred exercise is cycling. I will only cycle on protected cycle ways away from traffic, there will be some pedestrians or other cyclists. I avoid areas where there are too many objects to track as that sucks my energy levels very quickly. I vary my routes and intensity of exercise, some days I just cycle for fun and to enjoy the sunshine, other days I cycle because despite a lack of motivation I know the exercise is good for both my body and my brain, other days yet I will do an intensive cycle (once or twice a week only, over doing it isn't good remember). I actually like cycling in the rain as it means even less pedestrians and other cyclists.

Number three, I can count other activities as exercise. Doing the garden, going for a swim, walking the neighbours dog.

Number four, if my day is filled with seeing my therapist and getting groceries and so on then I wont get any exercise and I don't beat myself up about that.

Number five, getting groceries is a hugely stressful event. I wear earplugs. The main weekly shop with my partner I can abandon at any time and retreat to the car if needed and he will continue. Other times I can do a limited quick shop on my own.

Number six, I do yoga once a week. I have found a small class where the instructor is prepared to quieten and if needed stop the background music if I request.

[Boy22]

Hey BeHea1thy,

I decided to try Yoga as Pete Walker recommended it in his book. And I am extremely lucky that one of my former patients is a yoga instructor. We bumped into each other and he gave me his card. I didn't get Pete Walkers book until a few months later. After reading it I contacted him and we talked about what I could and couldn't cope with so he recommended his smallest class that is also fortunately at a quiet environment.

He is enjoying helping me as a return for all the times I helped him.

Then my new psychotherapist further endorsed my doing yoga. A couple of sessions later he asked me if I looked forward to it. I stated that I did not look forward to each class but was doing it as a matter of faith in both Pete Walker and my psychotherapist.

So I understand you BeHea1thy when you say it didn't click. It hasn't for me yet either. Perhaps I have an advantage that I did gymnastics as a child so the yoga poses are simply contorted stretches that we did during our warm ups/downs. So I do feel some comfort and pleasurable memories in guided stretching.

Get your exercise programme cemented into your routine and then reconsider the yoga.

As for the rests, my psychiatrist was over the moon with excitement when I told him of this. He called it sensory deprivation and said it is something that PTSD researchers are currently writing many papers about. So you and I are already ahead of the academics! Take pride in your rests, they are good for your wellbeing.

A pleasure talking to you BeHea1thy,

Boy22