The only thing that ever made my Dad cross when I was growing up was that childhood whine, "I can't do it."
He would make me keep trying over and over again until I cracked it and always told me I could be anything I dreamed of, achieve anything I set my mind to.
Over the years of being a patient, his advise has often been the only thing to get me through. However unpleasant a test, however searing a pain, however much I feel like giving up, I hear those words, "There's no such word as can't." I remind myself that however much something might hurt, however unbearably uncomfortable an investigation might be, if it isn't going to kill me then there's no reason to be frightened.
The most horrific incidents are now burnt into my memory. I've been diagnosed with Crohn's since I was 16, and in all those years, no-one has ever given me any emotional support at all. I've never been offered counselling, no-one has ever enquired how I deal with my illness and a doctor has never, ever asked me how I cope or offered any suggestions.
I know that some of the readers of my blog suffer from mental illnesses, and I know very well from my poor husband that depression is very real. With that in mind, I hope they understand what I mean if I say "I don;t do depression." I don't mean clinical depression, I mean reactive depression. The more I mope about, the worse I feel, so I've learnt to brush myself down and get on with life, locking the horrors away in a little box in my mind.
To my dismay, a while ago, the lid of the box kept pinging open. Seemingly randomly, an image of some dreadful living nightmare would pop into my mind unbidden, and I'd struggle to breathe. My hands would go clammy, my heart would race and I'd feel a scream welling up in my lungs, thumping against my chest to be let out. I could be cooking the dinner or waiting for a bus and suddenly, a sound or a smell would trigger a memory and I'd feel like I was there again, back in that particular moment of terror.
I find it incredibly hard to talk about my feelings, even with my husband, so telling the world wide web now is probably a little beyond me. However, to cut a long story short, I was diagnosed with Post Traumatic Stress Disorder (PTSD) and referred for treatment. unfortunately, that was just the day before I had to come back into hospital.
My very worst times in hospital have always been when, for whatever reason, I've been left in pain for hours on end. Unable to get out of bed, I've been left to suffer helplessly, with no way of knowing if anyone will ever come to help me.
These days, I am always written up for the right painkillers and I am able decide myself when they are given. As long as that system functions, I am pretty happy-go-lucky and all is well. It's the one thing I can control, the one crutch that enables me to bear the other indignities. As long as I can stay out of pain, I can focus my emotions on dealing with everything else.
I was moved earlier from one ward to another, and when I got there, I was due some painkillers. After a few minutes, the nurse came back and told me that they didn't have any on the ward and they would have to order it from pharmacy, which could take hours. Bam! The steel band slammed on my heart, squeezing out the air. I wanted to scream or run away or both. Like a slide-show, vividly real images flashed through my mind, an album of horror. I was helpless. My one defence against absolute dependence uncertain.
Many of you have said how well I cope, how strong I seem. The thing is though, I'm just human, exactly like you, I'm no stronger or braver, I just have no choice. I have to force myself to tolerate needles and tubes and blood and pain without making a fuss, but it seems my mind has other ideas and has drawn a few lines in the sand.
I've also mentioned, how over the years I've had to force myself to drink gallons and gallons of unpalatable liquid feeds. Apparently enough of that is also enough and my brain simply refuses to let me drink large quantities of unpleasant liquids any more. Like Gillian McKeith on a bushtucker trial, I just can't make myself do it. There is such a thing as "can't" and it feels horrible.
In the midst of my panic over the lack of painkillers, a porter arrived to take me for my MRI scan. Struggling to breathe and control the enormous lump of panic in my chest, I had no choice but to get into the wheelchair and be pushed through the hallways in floods of tears, hiding my face in my hands for dignity. Without my meds, I felt unbearably sick and by this time my painkillers were two hours overdue, so the pain was gnawing and stabbing unmasked.
In this shameful state, a radiographer appeared with a 2 litre jug of liquid and explained that I'd need to get through it all before they could get a useful image of my bowels. Slam! The belt tightens more. I see forced tubes and failed biopsies and agonised presses and the scream bubbles closer and closer to the surface. I sit like an imbecile, rocking, unable to explain why I was behaving so oddly. A slightly detached me could see that I looked neurotic and pathetic and difficult but "Can't" had caught up with me and I was totally unable to shut it back in the box.
The test I'd waited so long for was slipping away and I couldn't do a thing to stop it. Defeated, they pushed me back up to the ward, still sobbing and choking on panic. I'd never refused a test before - never even complained about one.
The oddest thing about all of this, is that rather than becoming more supportive or sympathetic, the nurses largely left me to cry and panic alone. They were irritated by my weakness and suspicious of it's motives. I've had the injection now (2 and a half hours overdue) and I've just had some supper, but no-one has spoken to me, no-one has checked if I'm more comfortable or happier and no-one will now. Tomorrow I will smile and joke with them and we'll all pretend it never happened. If I'm lucky, they'll give me the benefit of the doubt - another chance before they classify me as "neurotic" and I lose my trust privileges. **
I can't tell you how I detest sharing this with you all and I am wriggling with embarrassment at the thought of posting it, but it's the kind of event that I've always wanted to share with the world, so I'll just have to swallow my pride. (There's room now the enormous ball of panic has finally gone down.).
The moral of my story, is that even the best nurse or doctor can forget what it is they ask their patients to suffer, how much courage they expect them to find. They have a job to do and it's the easiest thing in the world to forget how traumatic all of the needles and tubes and side effects can be. Even so, if a patient says they can't bear to go through a particular procedure, it is always worth asking if you could do it yourself. Not only could you do it, but could you make yourself do it over and over and over and over again?
**Trust privileges include going for cigarettes un-escorted, freedom to go down to the shops to buy snacks, friendly care and extra cups of tea.
I'm here with hugs and to see how you're doing now? I related so much to most of this post it brought tears to my eyes. Thinking of you BG Xx
ReplyDeleteSue....Out of darkness cometh light, the upside of your posts is that everyone reading them benefits. All real writers expose their deepest darkest fears through their work,the ability to communicate their emotions at the most profound level is what distinguishes them from the rest, you are no different, your writing has a profound effect because what it contains is you, raw and unexpurgated, real life...You shouldn't be embarrassed, you should be proud of your gift. <3
ReplyDeleteWow, Sue you have a way with words that can move mountains. I'm glad you feel able to share you thoughts with the rest of us. If it moves one person to take a second look at their actions or attitude to others you have succeeded.
ReplyDeleteWell done.
That is just absolutely horrific. We can't do anything about you being ill, but we can treat you well when you are - surely. No really, surely the radiographers and nurses know that some people will freak out and need reassurance. At this point I am almost shouting at my computer in disbelief!
ReplyDeleteIf it were a child having those tests and reacting like you, the staff would have been full of sympathy and done what they could to help. Surely they would. Maybe they wouldn't...
They failed you - you were tired, in pain and a long way home. One way or another, you were just a person in hospital being ill, not setting out to be difficult.
Aaargh! - and I fully appreciate I am only reading about it and not living through it.
BTW - I love your blog, you write with such wit and intelligence that it puts many paid writers to shame. In hospital, but still entertaining and provoking the thoughts of the WWW - you certainly put my day to shame!
Sue, I do hope that you are able to get this message across in writing for a new audience. You are always so positive and patient and on another site you have prompted me to challenge what I can and can't do and volunteer to do things that are way outside of my comfort zone. But after everything you have experienced please don't be too hard on yourself, none of this is your fault.
ReplyDeleteOh that sounds awful, and highlights the worry I've had over recent years (i.e. since becoming seriously ill) that nursing has ceased to be a vocation for many and has instead become a job - so when the weakest and most vulnerable are weeping in pain and panic, it's ok for them to be irritated (*and* to show it) because we are not allowing them to do their job with speed.
ReplyDeleteI am trying incredibly hard not to acknowledge Ken's point about private care, it opens way, way too many cans of worms.
ReplyDeleteMy husband too had private care in a hospital and his experiences were so different to mine it was like trying to compare Beverley hills with Beirut.
As Ken points out, if they can find respect and kindness, does that mean that those sentiments can only be bought?
I think that might destroy my faith in human nature once and for all.
Sue,
ReplyDeleteAn excellent read... and an excellent attitude! I enjoyed the sentiment of the post. They say it is the largest organsiation in the world... I wonder if that contributes to the organsied chaos of it all?
Best wishes & thoughts are with you...
you are so brave! I know what you mean about "can't" I've suffered with that before and i've suffered the same response. Stay strong and your not alone.
ReplyDeleteMy thoughts are with you xxx
I have long thought that many sufferers of long-term illnesses will also be suffering from PTSD ... certainly it is true of ME/CFS... and you certainly have enough horrific experiences for the whole of Brighton (!) but I am really surprised that you have a diagnosis. Would it be intrusive to ask whether this from a Psychiatrist, Psychologist or Psychotherapist?
ReplyDeleteI think it pretty likely that many/most/some sufferers will have learned ( as you have described yourself) to dissociate from the physical pain/difficulties and this predisposes one to developing PTSD. In effect, the sufferer learns to separate thinking and feeling. In the panic attack phase, thinking is excluded and the emotions are overwhelming, and visa versa in cutting out/reducing the physical pain, where there can be a sense of almost unreal calm simply observing the sensations.
This separation process involves that part of the brain, the amygdala which orchestrates the flight/fight/freeze response. It reacts to a 'scare' stimulus in 13 milliseconds as opposed to the 300 milliseconds that it takes for the conscious brain to become aware. In that 287 millisecond lag, neurotransmitters flood the frontal cortex so that you are totally focused on the perceived threat and cannot think, your BP changes, blood floods from the internal organs to the muscles and your breathing rate, heart rate and gut become desynchronised. All of this produces the physical experiences of panic and that is scary in itself. Unless, one is able to get 'away' from the stimulus, one is locked into a positive feedback where the symptoms continue to increase.
The ‘scare’ stimulus is the hypnotic trigger for the traumatised reaction. The amygdala compares and contrasts, so that any sloppy match with a previous trauma fires the PTSD reaction.
This is where our biology and the modern world do not quite match up.
The thinking/observing phase is clearly of evolutionary advantage in getting away from predators or danger. There are loads of stories of people holding up 3 ton lorries to rescue another or soldiers carrying on, not knowing that they've been seriously hurt.... this part of dissociation is the bit that facilitates fight and fight.
The panic phase is associated with 'freezing' when the animal cannot fight or flight its way home to a safe place. Clearly sufferers of illnesses cannot get away from the pain unless they have access to pain relief. They also cannot get away from the treatments that they need and are thus also trapped.
I think that it is also often difficult for a sufferer to express anger to their carers because they are frightened that they will be 'abandoned' (eg trust privileges taken away)... and that's a pretty frightening thought too! In any case, I am struck by how often PTSD panic occur in situations, in which it would be reasonable to be absolutely volcanic with rage.
And in this instance, you had so much reason to be volcanic with rage.
PS Sorry if I'm teaching my grandmother to suck eggs, but I thought it might be helpful to know that your reaction is just the hard wiring of your brain and extremely useful if you are facing a sabre-toothed tiger but not, if you are facing an MRI scanner. Furthermore, it is an automatic conditioned reflex … so how can you possibly be embarrassed about the fantastically amazing complex mechanism which facilitated the human race to survive prehistory! Do the anger about how you are treated instead.
Wow!!! Syzygy Sue that was amazing!!! You described EXACTLY what happens to me and I had no idea it could be explained so scientifically. I just thought I was cracking up, lol.
ReplyDeleteI was sent to a "counsellor", I have no idea what his title was. He just said I was explaining classic PTSD symptoms and there were ways they could treat it (GBT, I think?????)
You explained it so clearly!
Huh, I just read it again, amazing.
ReplyDeleteI had a stroke after my last operation, but the sister and nurse in my room insisted on treating it as a panic attack - sitting me up and trying to make me take a glass of water in my paralysed hand. Despite my vision going, my face falling, my speech slurring and ultimately, total paralyses of my left hand side, they wouldn't accept I was having a stroke. It took them an hour and a half to get a doctor to me, but they never apologised or admitted it ever happened.
Now, every time I see that poster with the face and the initials F.A.S.T., I get the symptoms you describe.
Dear Sue
ReplyDeleteThe only thing vaguely crazy about you is your sanity in the face of such madness!
I can’t imagine anything more terrifying than your stroke experience … and I’m so pleased at the obvious competence of your counsellor in identifying PTSD. He is recommending CBT – Cognitive Behaviour Therapy.
But in the meantime, you need an MRI scan and I wondered if I could make some suggestions that might help. Stop reading now if you don’t want them.
As I have already suggested the trigger for your dissociative panic is the sloppy match that your amygdala makes with past experiences. Therefore, change as much of the sequence of events as you can.
For example, under no circumstances allow them to take you down without good pain control.
Remind yourself that any panicky feelings are totally normal given your past experiences and the hard wiring of your limbic system (brain).
Get as grounded as you possibly can…. talk yourself through the expected process prior to setting off and think about how you want to deal with each aspect.
Find a grounding object – your watch, a button, photo of the boys – take it with you and touch it, if you feel the panickyness to remind you that you are reacting to the past and that this time is different.
Grade how you are feeling each step of the way – 0 being no worries, 10 being the worst – because this a conditioned reflex you cannot just eradicate the reaction, you can only decondition it by experiencing it differently. If possible, do not go through with the procedure if the panickyness goes above a 4/5 - anything less than a 5 will decondition the reaction, whereas a 10 will tend to reinforce it.
That’s probably enough for the moment, but I would also tell a sympathetic member of staff what you’re experiencing … unfortunately they tend to be very ignorant about PTSD so you’ll be doing them a favour to explain, and they may have some helpful ideas.
Finally you can debrief either here on the blog or email me suedavies18@hotmail.com
Take care of yourself – the more care you take of yourself, the less likely you are to have a panic attack. You really do deal with all this amazingly.
Syzygy Sue x
PS No-one ever feels anything for no reason. You may be mistaken in your assessment but you are not crazy/making a fuss/being unreasonable etc.
Sue, that you can write all of this down I hope helps you.
ReplyDeleteI hope it is widely read by those with power and influence.
You open your heart and touch so many of ours.
Perhaps it will help if good comes from that pain, it should not happen again.
Syzygy's advice makes sense to me.
Take care! Xx
Syzygy's post was inspirational...
ReplyDeleteThe advice is probably useful to anyone at all who eperiences any level of anxiety! I read it a couple of times also!
Excellent read :)
Sue - I feel very uncomfortable with my last post. However well-intentioned it was meant, I believe that it was ill-judged. I do not know how to delete it, but I would be happy for you to do so. Apologies.
ReplyDeleteSyzygy Sue! Why on earth are you uncomfortable with it? Of course I'll delete it if you want me too, but I found it extremely helpful and I'm sure others would too. The bit about an object for instance. For a long time now, I've bought a little glass angel with me every time I come into hospital. Just as you suggested, I keep it in my hand through the worst moments and it soothes me. Reading your post made me realise it was a helpful thing to do, not just coincidence.
ReplyDeleteLet me know what you want me to do, but I can't see what about it you are uncomfortable with. xxxx
Sue
ReplyDeleteThat’s brilliant … I was concerned that it might be the equivalent of the F.A.S.T. poster for you!
… and it just seemed easier to remove it rather than to risk adding another stressor.
If it doesn’t affect you then I am more than happy to leave it be.
Syzygy Sue x
Syzygy Sue - Not at all, quite the opposite. I've always found that the more information I have, the less stressful things are. So, if they are late with painkillers, as long as they explain and give me a time to aim for, i'm fine. It's when I don't know that it triggers that "Will they ever come?" "Will this go on for hours?" etc etc.
ReplyDeleteThe more you can tell me about these weird episodes the better, because I don't know a single thing about the emotional side, and have always resisted emotional responses to my illness. I couldn't be more surprised that I'm suddenly getting these "panic attacks" or whatever they are - I thought they couldn't happen to me, lol.
So far, I am realising that my triggers seems to be :
ReplyDelete-Smell - That unique mix of overcooked cabbage, antiseptic, bowel ward and flowers. When I 1st smell it, I panic. (though it wears off once I'm used to it.)
-Sound - There is a mechanised voice announcing the floors in the lift. It's bee the same voice for the whole 16 years I've been coming here.
-Seeing the hospital - The first time the car crests the hill before Addenbrookes, and I see the hulking campus.
-Too long a wait for pain relief with no explanation.
-The FAST poster.
- Being asked to drink large volumes of unpleasant liquid.
Your triggers illustrate beautifully the stimuli that tend to become entrained.
ReplyDeleteThe brain does an enormous amount of top down, bottom up processing of the raw data coming in from our sense, prior to a conscious thought - the 300 milliseconds I was talking about. The amygdala is different in that it takes the raw data straight from the first pooling station, the thalamus. Hence it's much faster response time of 13 milliseconds.
This is fantastic in terms of responding to danger but means that there is no comprehendible 'train of thought' ... and it often appears to be a bit illogical (hence, my concern for your reaction to my posting), and there is no mechanism for retrieval of memories, they just come.
You describe clearly your triggers as being representative of the five senses - smell, sound, sight, touch (ie. pain) and taste (the unpleasant liquid).
The FAST poster falls into the other category which is our declarative memory system ... having the thought about what the poster refers to, is the trigger for the amygdala.
As I said before, the amygdala makes an automatic sloppy match between the unprocessed raw data and previous experience, and fires. The amygala is without the capacity to fine tune or modulate a reasoned response - that is the function of the higher brain.
Deconditioning the response requires us to re-experience the hypnotic triggers at a much less toxic level, and to attach the new understanding to the memories which the conscious brain drags up to explain our reaction (300+ milliseconds later). A good way to reduce the impact of the hypnotic trigger is to 'change' it as much as you can... eg. try drinking a large volume of something that you do like ... or take some cloves/ lavender oil onto the ward to smell.
Perversely, I think the most important thing is to remember and take your reactions seriously... I say perversely because many peoples instinct is to try and ignore their body's warning signals or anniversaries. Knowing and 'parenting' yourself through is the way forward.
Is that lag why we often seem to get a pre-sentiment of disaster?
ReplyDeleteNo, our conscious brain is not really quick enough to perceive the difference between 13 and 300 milliseconds.
ReplyDeleteThe only time that I was aware of it, was the day that I noticed a friend's 18m old walking along the bottom of the swimming pool. I remember the dispassionate thought "Oh, that's Isabel". The next moment, I was in the water, fully dressed, handing her out to her mother. I had no conscious thoughts about jumping in - it was all on auto-pilot. The brain scanning evidence is that we make the decision unconsciously before it becomes conscious... and in this case, my amygdala orchestrated the whole event.
I think there may be many explanations for the pre-sentiment. The most obvious physical one would be that the amygdala is making some match between the present and the past but it is insufficiently good to fire a full-blown traumatic response.... in fact this could be seen as priming. The brain is constantly trying to predict what neural networks will be required in the near future.
By the way fantastic article in the Guardian ... even more so, considering the circumstances under which you wrote it! Well Done!
And the medical profession are finding the blog! I hope your chilling experience of not being able to get them to hear you, when you were in such danger, stops it happening to anyone else. it doesn't bear thinking about what you've been through.
Syzygy Sue x
I really love your posts Sue, I'm learning so much and for me, the more I know, the calmer and happier I feel.
ReplyDeleteDiabetic Daisy is here because she developed a frightful phobia to needles. After a lifetime of them, her brain suddenly said, "Erm..... Nope."
I'm convinced she has the same problem I do. she's had to disassociate herself from something that is really distressing for so long and now, her brain is rebelling.
I am so sorry, Diabetic Daisy ... a lovely consultant that we saw had the same phobia after having really mangled his hand and self-administrating a painkilling injection. He could give injections but got the heeby-jeebies watching my daughter self-inject Vit. B12. Hypnotherapy might help for this specific phobia, but I would be cautious of hypnotherapy if there is an additional significant back-history....
ReplyDeleteThank-you for the affirmation Sue ... I am happy to think that I can make a little bit of difference. It does seem like there is a research project here ... the incidence of PTSD/specific phobias ... and my experience of the medical profession, even mental health services, is that their understanding is often patchy/dismissive/ignorant. It's a real problem.
By the way, have you ever tried acupuncture for pain control? I know that there is now an evidence-base for it's efficacy.
Thought of you last night when there was a science radio programme about pain. It was clear that they are very far from understanding how and why in star-nosed moles let alone human beings! Fits with our experience of the medical profession being more concerned with addiction etc. than understanding the imperative of pain control.
"By the way, have you ever tried acupuncture for pain control? I know that there is now an evidence-base for it's efficacy."
ReplyDeleteI should have said efficacy in major surgery ... so high level pain control.
Having said this, I imagine that you know all there is to know about pain.
Syzygy Sue - I did actually, but it was for a fractured rib that just would not heal and was excruciating. Due to osteoporosis, I'd fractured the inside (next to my lung) of the rib, which they said was less common and of course every time I took a breath, it stopped it from healing.
ReplyDeleteI'm not sure in the end if it was effective, or the rib just finally healed.
I just logged on just to ask you something actually. I've found your posts on PTSD an absolute revelation. Like you I've begun to wonder if it's actually a lot more common than we think in chronic illness.
I'm being really cheeky, but do you think you might consider doing a "guest blog" on the subject? The things you've described have helped me enormously to understand how constant trauma has forced me to adopt things like disassociation and a special item. Perhaps you could go through the symptoms and explain how they might manifest in those with long term conditions? I've got a feeling hundreds of people like me might be very grateful. It might also help them to get better support from their GPs.
Anyway, I know it's a huge ask and our lives are so busy. Please don't do it if you find yourself thinking "Oh pooh, I've got to find time to write that stuff for Sue." Lol
Hope you don't mind me asking,
Sue xx
I'd be happy to.
ReplyDelete(Random thought.... the curse on little girls called Sue.. the pooh- rhyme.
"Oh pooh
I've got write for Soo" .. or the 'Susie-pooh' thing.)
May take me a few days to get PTSD thing done... but I have written stuff above that I can adapt... is there anything specific that you found helpful or should be expanded?
As I said before, I think PTSD is widespread and practically unaddressed, so I'm delighted to be asked to do my bit.
Syzygy Sue x
Your posts make me sad. Because I know exactly what you went through, it's like somebody took my own thoughts and experiences and wrote them all down! I am not at all surprised at your hospital experience, as a fellow Crohn's sufferer it's one that I've endured again and again. Thankfully in Australia you can purchase low-level codeine over the counter, which seems to be doing the job of managing my pain (for now). But you still have to speak to the pharmacist when you ask for it, and explain why you want to buy it! But if I'm in need of anything stronger I have to go to hospital and try to convince the ER doctors that I'm no junkie after a morphine hit. By the way, have you ever had problems with Paramedics? I had to call an ambulance to my house last year due to a flare, and the Ambo remarked "usually people with Crohn's Disease are really skinny?" Inferring that I didn't have Crohn's because I was about 10 kilos overweight? Good grief.
ReplyDelete