4 Years Surviving: Am I thriving?

27th Deceember 2015: the single worst day in my life and I have no memories of it. But engrained in my heart, soul and bones, The day I was moved from HDU to ICU. Circling the drain, going insane, IV drugs in my veins, sedation, and analgesia to numb the pain.

So four years on everything is going smoothly, living my best life fully recovered from ICU right because  4 years that's long enough to recover right? Well yes and no, I have recovered from a lot of things and surviving ICU has given me a level of confidence and self-assurance I never had before but I am still broken. Parts of me won't get better, my mental health is affected and will never be as robust, my memory is sketchy not as bad as it was but I've hit a plateau and other physical issues.

Am I worse than I was 4 years ago, In an immediate sense nope because at this time 4 years ago I was pretty much dying so I am vastly better but Am I better than I was before ICU. Objectively? Kind of, I am different as I am sure anyone who knew me before my ICU stay will attest too. My personality has changed and not in a bad way, I am less concerned with failing or what people think and more concerned with trying to be positive and bring the mood up. I am less afraid to do things and put myself out there, I would never have written a blog 4+years ago. So some of the bad things? The scars on my skin, that most other people don't notice, hold trauma for me that might have faded but have not departed. My beard is not just to keep my face warm but hide the neck scar which makes my stomach cold to the core. What ICU weakened in my body it strengthened in my resolve and my soul.

A second chance at life? Pretty precious right? What would you do with yours? Me? I'm trying to get the best care for as many ICU people as I can. It's my passion, my calling and the reason I am here. The best way to thank those who saved my life is to bust my ass off to make sure everyone who needs ICU care gets the highest quality care they can. Now I will never be an Intensivist, ICU nurse, Physio or OT or anyone else involved directly in ICU care but what I can and am trying to do is tell these people what it's like to be in the ICU bed. Because it is hard to imagine what it is like to be in there, I used to think people in ICU were just sleeping. This couldn't be further from the truth, it's like living in a nightmare you can't wake up from and for me, 7 years of torture happened in those 2 and a half weeks.

But I am getting sidetracked but here are some straight facts, more than 500 people follow me on twitter, I know that doesn't sound like a huge number but it is to me. 500 people think I have important/useful things to say. That means a lot to me and a lot of them have 'spoke to me on twitter about one thing or another which makes me feel useful. In the end, after surviving ICU I just want to help people and these are the ways I feel I can.

Thank you every single person who follows me, you are all awesome people doing awesome things even when you don't know it. I wanted to do something for getting 500 followers but I couldn't find any words that could convey how I felt but Thank you. I love talking about ICU and delirium, hearing what is going on research-wise and more importantly in the wards. You inspire me to work, hard and spread my experiences further. Thank you, everyone, for making a place known for being unfriendly and rude to be a safe place where I can feel at home with friends and people who actually care about me.

I can't repay your friendships but I hope we can all work together to make the world a little bit better

Dear My Past Self

Dear Mark of yesteryear,

In your life, you will have much to fear. The Loss of your Grandfather you hold so dear. Your health will not last past your fourteen year. In your time there will be much cheer, success academic and socially. You will not have smooth sailing this is the truth, you will not get a chance to misspend your youth. The hospital will soon become your second home, the nurses of the ward, first named terms you become. With the struggles, you will learn the measure of your soul, even when your illnesses will taketh their toll. In your struggles, you will find out whom are your friends for sure, those who never visit struck from that list, feel no sadness for they will not be missed.

Your Immune System will betray you taking from you your intestine for sure, it attacks your blood, liver but to name a few. Its attacks relentless will sometimes leave you exposed to those infections none of us would choose. Influenza can break you this is the truth as it left you helpless for over a week. But that is the least of the problems you've faced. An Infection will send you to the ICU lungs inflamed and filling with fluid, soaked with sweat every second of every day. So close to death you will never really appreciate, but your family called in to be told of your imminent demise but stronger than they expected you where inside. We are tough forged in the fires of hell but tempered in the love of those we hold near.

When you start to help in things medical new friends you will find, from all across the globe both far and near. It might surprise you how important these friends will become, helping and supporting you at every turn. Helping you to see the impact you can have and showing you love of which you are glad. A whole world of opportunities opened up to you from the support of those great people, giving you the platform to help others which has always been your dream.

Unconditional love from strangers might sound strange but it is there, respect shown for the facts you are sharing. Every single one caring about your health.

From

Your Older wiser Self

Dear ICU Suvivor

Dear ICU Survivor,

It is unlikely we will ever meet but I know what you are going through because I am an ICU survivor too. I know you are stronger than you think and even know right now, you have overcome something that nearly killed you. Your strength and determination brought you through with the help of an excellent ICU team. In the beginning, everything will seem like it is too difficult to achieve and it will be a struggle but you will overcome these hurdles.

The ICU team and the teams on your step down out of hospital are all trying to get you better as quickly as possible and I know at times the physios, doctors, and nurse seem like the enemy pushing you to do things you are too tired or too frustrated to do but there are reasons why they are getting you to do them even if you don't see them. The rehabilitation seems hard but you have overcome so much already. You might not be able to see your progress because it is small steps on a daily basis but your friend and family, as well as the staff, will. When you look back at what you are now able to do that you couldn't do a week or a month ago you will see how far you have come.

I will not lie to you, it will not be an easy or quick path to recovery but it will come. On your recovery journey, things might no longer be able for you to do but I can assure you other things will become available to you. Before ICU I would have been terrified to talk in front of a group of people but I tell my ICU story to healthcare professionals and have spoken to a conference of 300 people. Surviving will take some things away from you but it will gift things to you. You will hopefully realize how strong you are because you are so very strong to overcome what you have.

We are family because we are both ICU survivors, we are many because others are survivors too. You are never alone, we all have gone through similar things you are a #Rehablegend and you prove it with every step you take and every hurdle you overcome. Being an ICU survivor is not a badge of shame but one of strength and determination, you are part of the #RehabLegend family too. We support each other because we all know what it is like to be in that bed we all know what we all have overcome, never forget your greatness and strength.

Your Fellow Survivor

Mark

My Anxiety and Me:

We are not friend’s anxiety and me but we are inseparable these days, I can’t go anywhere without it. It is like an abusive troll on your shoulder whispering in your ear telling you you’re not good enough, no one likes you, that venturing outside will just mean a hospital visit for you. Anxiety is a cruel mistress who seeks to tear you down especially at the moments when you need to be strong. Anxiety has made a coward out of me and it shames me to say it, it makes talking in public feel like dying in that ICU bed again. It says to me when I share my story that it was a waste of everyone’s -time and that it was useless to them. It makes me feel like I am worthless, but I know that I am not. I know that when I speak I am giving you a part of my soul, showing the worst times in my life so that you can glean insight or wisdom from my trauma. I know in the balance the feeling I feel leading up to speaking is worth suffering so that someone who finds themselves in my position in the future they get the best care possible.

To me anxiety comes in two ‘acute’ forms the first when I do something extremely outside my safety zone like going to speak at the EDA conference (Honest I will finish part three blog) this one feels like someone has shoved a hand through my stomach and up into my heart and is squeezing it. Without people like Prof MacLullich and Margaret Farquhar being there as people I knew even if only from the internet and the lovely Dr Miller, I doubt I would have been much use the rest of the time. This is the worst time and really makes me feel like garbage for doing things. The second is when things are not going to plan, or something springs up that knocks me back and have trouble coping this one is like someone is choking me with their hand on my throat. I have trouble breathing but it is not as severe as a panic attack (I had them back in my early recovery time from ICU ~a year post ICU) but similar in its way of affecting me. This is when a test is coming up or when I wake up and my stomach hurts or a delivery is late. These little things quickly snowball with me and really impair my ability to live a somewhat normal life.

But whatever form it comes in it still sucks, it still makes me feel like garbage. Before ICU I’d take everything in my stride nothing would really get to me even with my long term issues. I’d have a bad time with an illness get admitted o hospital feel back mentally for a few days then get back to the struggle without any real issues. Since ICU my baseline anxiety is much higher, before ICU I was maybe a 2/100 as a norm, not really anything new I’d say I am a 20/100 baseline but anything can knock me up real high real fast. I try my best to put my situation in a way that I have a net around me to catch me when I start to spiral, twitter has supplied me with some world-class people who I can sound ideas off like Dr Dale Needham, Dr Segun Olusanya, Dr Heidi Lindroth, MarcLittlemore, and the wonderful Kate Tantam. More importantly, it has given me friends and confidants people I can go to when I am having trouble and say this is going on and not feel like I will be judged or put down for it: Dr Heidi Lindroth, Kate Tantam, Louise Galle and the one and only Mitochondrial Eve. I have been absolutely blessed to have so many great people on team Mark and it has really helped me in a lot of bad times to know I have people.

But to close out, the effects of ICU don’t stop at the time the patient leaves the front door, they don’t even finish after your ICU clinic visits as an outpatient but in my thoughts, the effects on a person are life long but not just the person but everyone around them. It takes a village to help a person recover but ICU effects a village's worth of people for each ICU patient. As patients, we often forget that our families went through it too and often Health care professionals often focus so much on saving the patients life that the family are forgotten. We can all do better, we can all think more but most importantly we can all care a bit more. We are all on the boat together lets try and make it the best we can.

EDA Conference Part 2: The greatness of people

(Day 2 for me) Day one of the conference was exciting, it was the start of when I could actively engage with the speakers as I now was not dealing with the anxiety of speaking and getting to Edinburgh. But boy was level of understanding required to keep up with the speakers much higher. It started off with a very interesting section by Dr. Karin Neufeld (Johns Hopkins) about things that might present like delirium and as such should be excluded. I was so engrossed by the material I forgot to take notes, but it was really interesting to think that perhaps delirium is not delirium. These are important things to think about when we are implementing new systems of identifying delirium.

This point was reinforced by the Patient cases presented by Prof. Meera Agar (the University of Technology, Sydney), Dr. Adam Al-Diwani (University of Oxford),

 Dr. Babar Khan (Sleep in the ICU)(Above) (Indiana School of Medicine) and Dr. Alessandro Morandi (Fondazione Camplani Casa di Cura). Which brought up so many interesting points for discussion and comparison like Catatonia vs delirium and the difficulties of distinguishing between them. As well as Autoimmune Encephalitis (which one of the ICU nurses in 'my' ICU has Pauline Murray) which could be a differential for delirium but also as co-present which is extremely scary. But most of the talks where academically stimulating to me but in the context of my life as an autoimmune magnet it was not that important to me that was until Dr Khan started to talk about agitation in ICU. It addressed the obvious things that agitation in the ICU is dangerous, the patient might pull their intubation line or central lines out impairing their ability to get the help they need. Managing agitation to allow safe treatment is important as is getting the patient mobile as soon as possible as it can help reduce delirium on its own. All very interesting but at this point I was starting to get a kick of a sore head, the coffee break came at a key time. I got to take in some water, talk to some people and recenter myself for the next parts.

Session 2 is the most important part of the conference, why you might ask because it brings context for everything that happened in the training and the rest of the conference. What was so important that it has such a pull? Patient and Carer experience, it is easy to forget that we are talking about people. So like my talk on the training day, these talks by Alexandra Adams (Patient and Med Student Cardiff University) and Dr. Julie Lustig (Daughter of Delirious Mum) bring context to everything that everyone does. After all, if you forget the people at the centre of the situation then you might quickly forget the most important aspect of care, you might forget the humans affected by everything you do. In my mind, the scariest parts of my delirium can be directly linked to procedures done to me. It is key to me that Doctors, nurses, other healthcare professionals, friends, and family understand that what you do can affect the delirious patient. You might be the soothing presence of a Quintan (the only 'good' guy in my delirium) or the evil overlord. It doesn't take much time to tell the patient what you are going to do or administer a little local anaesthetic before placing a line. These things might seem obvious to you and if it is then I bet you have lower than average delirium cases. I always say just because a person is delirious or in a coma doesn't stop them being a person, you wouldn't do these things to someone who was compos mentis.

These contextual talks were followed by a very interesting presentation by Dr Emma Vardy it was titled A New Digital and quality improvement programme to improve delirium care. It was very interesting in the application of digital tools in what is becoming a more digital medical record based world. It increases patient safety and reliability of diagnosis of delirium as well as reducing variance in spotting it. So from my memory and notes the core point was when certain criteria are met you are prompted by the system asking you is the patient suffering from delirium and opens diagnostic suggestions and things that may help with the delirious patient. This to me is a great thing because it is not solely relying on someone to spot it but giving a gentle reminder that hey maybe the person has this? Really great and it is shown to make big differences and this, in my opinion, should be implemented in all digital records based systems.

So that was Lunchtime and for those who want to know the food was good and I drank about 4 litres of sparkling water. I then attended: state of the science in delirium education Dr Wolfgang Hasemann PhD chaired the session which included Prof Andy Teodorczuk, Dr Claire Copeland , Dr Elke Detroyer PhD and Dr Emily Gallagher. Before I get into this section I want to apologize to Dr Gallagher I remember her presentation was great but I was having brain fatigue and with having to run at a high level for so long on the day I simply was just unable to take notes and engage. It was not a reflection of her work but more my now limited ability to concentrate and process data for that length of time. So that aside it was an extremely interesting section filled by brilliant people doing brilliant things.

Dr Copeland and Dr Teodorczuk (above) addressed similar issues and as such, I am going to talk about them as a pair except for a few points. Dr Teodorczuk spoke about how to teach better and how to plan teaching so that you are reinforcing learning which is very important. Both of them spoke about the need for the end-user/patients to be involved in the training as they will be the recipient of the care as well as integrating education into QI to ensure its maintainability. But there were a few points Dr Copeland spoke about that was interesting and terrifying: first, a patient with delirium costs an EXTRA £13,000 per admission, that is a huge sum considering 20% of the hospital population are getting it (at least much higher in ICU and post-operative situations); Secondly addressing delirium education at the undergraduate level not just for medical doctors but nurses and any other healthcare profession requiring undergraduate education. The latter point is extremely important as it is the best way to change the culture of delirium and its diagnosis. The former point is mind-boggling as those are huge sums of money.

Dr Detroyer showed that e-learning can replace traditional learning but used correctly can augment traditional learning and help to create easier access to knowledge and learning which can be a huge hurdle in a hospital as capturing everyone to be taught certain things like delirium can be difficult but a e-learning program that augments the existing system can help ensure people are not missed or feeling disempowered by others who have had training they have not.

And after this, we had a break which I was thankful for as my brain was hurting right about now and a water break. We are nearly done for this blog honest, I know its a lot but I broke it up with pictures for your viewing pleasure? I know, I know I am getting sidetracked with my witty repartee.

So next was the second last session of the day for me was another one close to my heart. Assessment and management of distress in delirium by Dr Jude Partridge and Ms Ffion Pritchard(Above). It was an engrossing presentation which touched on the lack of aftercare for delirium and even mentioned InS:PIRE and the importance it plays in Post-ICU delirium recovery. These are things I feel strongly about given I am a post ICU survivor who had delirium. But they spoke about something that maybe doesn't get talked about enough and that is the shame of delirium, everyone here has known me post ICU, I didn't have twitter or this blog before so you don't know about my time immediately after my delirium. 

There is a reason for that and it's simple I write about what I want to and what I think is important and this is a topic that is hard to talk about or understand when looking from the outside. When I was back in the world after my delirium, I was told what I had been like, paranoid, untrusting, belligerent, things that are very much not me. I was then moved back to the medical high dependency unit I had been in before being admitted to ICU and the nurses said how much better I was looking than the last time they saw me. Now this should have been a positive and uplifting moment but it put me to the floor because they knew what I had done, they saw me act that way. I remember apologizing to one of the nurses and crying because I was ashamed of how I had acted. Being the extremely kind and considerate lady she was the nurse told me it was alright and that she knew I was very unwell and it wasn't the real me. But I just want you to understand that the shame of delirium stays with you, I am still saddened when I think about how I was then, even knowing that I had no control over it or even been able to change it in any way.

I was greatly helped with my ICU delirium by the InS:PIRE clinic but not everyone who has delirium receives any aftercare. In fact, not everyone with ICU delirium receives aftercare, this needs to be addressed. Delirium destroys you, it leaves behind a broken shell and we need to help people who have overcome it to get back to something like normal life.

The Last session of the day for me was Dr Teodorczuk's The wicked problem of Delirium education: aligning medical education and research. I won't lie this was not aimed at me or even anything I could really contribute to but I thought it sounded interesting. From the people I talked to it sounds like it was a great session but was more relevant as you might have guessed to HCP particularly educators in those settings. Anyone Involved in delirium education and wants to share things you are doing if you use #DelEd on twitter to help show the world the great things you are doing. Below is a video I did with Dr Teodorczuk at the conference. 

What is the one key message you have for healthcare professionals who care for patients with #delirium? @MarkThomHudson shares his thoughts #patientexperience #deled #listen #edarcpe19 pic.twitter.com/mlwxConwZP

— Andy Teodorczuk (@andyteodorczuk) September 6, 2019

I hope you all enjoyed this blog, it has been a slog through me being unwell after the conference, college work and it just being a huge topic. Thank you for reading and I hope you enjoyed it. If I can ask a question of you, What do you think is the most important thing in Delirium care?

EDA Conference and Training day pt 1.

So I had grand plans for blogging every day from the training day and conference but as you will have no doubt gathered that it didn't happen. It was not because I was too tired like I had worried about before coming to Edinburgh it was because there was no time. not only was there a packed program during the day but there was also evening events which took the time I was planning on using to blog away. So what comes next is this I noted leading up to heading to Edinburgh before the conference.


Monday 2nd Sept: I am frantically printing slides and rereading poems, you might say why did you not prepare before then. Well thanks for asking random person, it comes down to anxiety, if I prepare then the anxiety and thoughts of what if I screw up start which makes me feel like garbage. Plus this is my life story so I don’t really need to prepare it’s coming from the heart so it’s best raw.


Heading to Edinburgh myself for three days is scary because if my health takes a turn I have no safety net. No one here really knows me or my health conditions the Dr's in Edinburgh don’t have my entire medical history. This is anxiety-inducing as my health often takes turns at the most inopportune moments so the thought of needing medical help when I am away from my safety net is scary. However this opportunity to help tell Healthcare Professionals about what it is actually like to have delirium is too important to let my worries or other issues stand in the way. If I can help change thinking about delirium it’s my duty as a survivor to do so.


Tuesday 3rd: Anxiety has hit, I am not ok, I am very sad. I worry about everything. What if they don’t like what I say, what if I get unwell, what if my stoma bag fails. Today is hard. I am staying with my aunt and uncle so the journey to Edinburgh tomorrow is an hour shorter to help not having to wake up so early. Being up here has helped to reduce the anxiety for now but it will return tomorrow I have no doubt. I want to do well because this will affect delirium patients after me, I want to help make the medical world as good as possible for those who come after me.


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Day 1 The training day: I left early enough to leave me plenty of time to get to the College. I took a taxi from the station as I remember the last time I was here it was a hill to climb to get to the college, I am no longer able to do that it would burn my lungs too much. I come in through the door of the college and the anxiety which had been suppressed by being busy travelling hit me like a hammer. Thankfully once I reached the registration area things improved for my anxiety, as Margret Farquhar was there to greet me. Margret is a wonderful woman, she is kind and welcoming and had made things very easy for me to get to the conference and supply all the information I needed to. Emails that had huge sways of text to delve through were qualified by a note at the bottom telling me what I needed to supply. She told me where I was going to be speaking, who was chairing my session, timing and other things. She helped me feel comfortable in what was a strange place with strange people.


I remember talking to Dr Hazel Miller, I am no longer sure what we talked about, I am sure it was maybe something delirium related but it might have been about the train journey or any other topic. She was a lovely Lady and has been a person I knew on twitter since I think delirium awareness day this year? It was so great to meet people in the real world who you have just known on twitter or through emails. I was the first speaker which is always best for me as it allows me to get the talking over and done with. I will let you all into a secret, I hate talking. I love to help people and helping people understand what delirium is like is great but standing in front of people is scary. Telling people about the single worst time in my life is scary, showing my scars is scary. But in the end, nothing can compare to my time in ICU so I know I can survive it.


Helping people understand what it is like to be delirious and its after-effects are very important to me, helping make care better for those who are in the situation I was in and make Delirium identification and treatment better. The other speakers on the training day where all brilliant but two stood out and stuck in my brain which these days is not a simple task. Dr Gillian Scott's talk titled Care of the highly agitated patient with delirium- a care-based approach. I found it engaging and interesting and was interest to learn about ward 52 at Queen Elizabeth University Hospital Glasgow, which from my understanding manages more complex delirium cases, which fascinates me as I would love to hear more about it and how successful it is. My feeling not just from the talk but from understanding the world it must be working as we don't tend to keep putting money into things that don't work.


The second speaker was Dr Andy Teodorczuk, who spoke about education and how to get learning to stick in those you teach. He spoke about reinforcing learning and addressed the different types of teaching that exist and which ones are best for ensuring they are retained. It was to me, a very important topic because it doesn't matter how good your lessons are if they are taught in a poor way and not reinforced it doesn't matter. It is the teacher's job to ensure the very best environment to learn, I will be talking about Dr Teodorczuk in part 2 as he spoke and had a workshop in the main conference.


In the afternoon I had hoped to attend a few of the workshops but I was asked to be part of the consensus group which would create core outcomes for delirium research going forward. Del-COrS lead by Dr Page and Professor Rose is a great initiative bringing standardisation and comparability to the future of delirium research. This means that research going forward will be able to be compared and aggregated to find useful conclusions which means better outcomes for people like me. In the end, I am kind of selfish, I want the next time I have delirium, because as a person with over 50+ hospital stays I am highly likely to get it again, to be better than last time. It was great to be on the group and was absolutely a great use of my time as a patients voice should be part of these sorts of groups but I am sad that it meant I missed out on the workshops.


Day one ended with a Reception at night, which once more was a terrifying concept to me, groups of people are scary not just from a social anxiety standpoint but also from an immunodeficient standpoint. I spoke to people for hours about different medical topics mostly based on delirium but also got to know a few people. I was not an outsider invading the historic college of physicians, I was not an inferior but a peer. That is a big deal, these world leaders, field experts, highly skilled practitioners looked at me as they looked at each other. Now that speaks to the character of the people involved, it would be very easy for a doctor to be aloof or above non-healthcare professionals (or even all non-doctors.) but not the attendees here. An excellent group of healthcare professionals but above all great people.


Just to end this part I want to say how much of an honour it was to be part of this event and being asked to speak was very humbling. I believe my talk went well as many people came up to me and said how they thought it was great and been impactful. I am very happy when people tell me they found my talks useful as it validates that I didn't waste mine and their time. And on a final note I am aware that a horde of people started to follow me after the conference so maybe didn't see the poem I read out on here so here is the link : https://autoimmunedisorderjourney.blogspot.com/2019/08/delirium-bullet-to-brain.html


Thank you, everyone who attended, everyone who spoke to me, I have a heart full of love for every single one of you. Please keep pushing the standard of delirium: care; research; management forward so we can be a much better place.

Sunshine

 The Sun blazing down on me,

Heating the air like an oven around me,

The air clear and fresh, colours so bright,

A cooling breeze making it bearable.

Windows open to kill the house,

Hoping to stop the temperature rising,

A battle I cannot win, starting to sweat,

Cars passing breaking up the silence,

The only sign that time was moving.

The yellow glow of light hanging in the sky,

Seemingly motionless with the heat overbearing,

Not a single cloud to block its sight,

Ever seeing, ever bright, ever burning.

Every floor showing under its inspection,

The glow-giving no quarter, clear of vision,

Every second wife renewed, give him energy and hope,

It is the spring the time of renewal. 

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The Sun dances in and out,

But when it is here it screams and shouts,

Say I'm here, for now, to sweat you out,

Hydration is key in these times of heat,

If I get dehydrated I will taste defeat.

Some days Hotter than the fires of Hell,

Next comes rain and coolness for all,

This is summer here in Scotland that is true,

Waking up in the morning with absolutely no clue,

Will, it be Hot or will it not,

Sometimes you have to go outside and just take a shot.

This is our penance for the gifts we are given,

A landscape that was surely from heaven,

Water so clean and so very pure,

River fill with fish I'm absolutely sure,

We here in Scotland are so very fortunate,

For we have everything you could ever have needed.

So in this the summer that has burned so hot,
I say roll on autumn so I can finally move,
For all of this heat for me is bad news,
A danger to stoma it is very true,
But here is a secret just for me and you,
I am thankful every day that I am alive,
For too close to its end, I have come.



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Hey Guys I am still alive but between the heat, preparing for the EDA conference and teaching day and a lack of inspiration I have been a bit quiet but I found the first poem I wrote in the spring so I decided to add one about summer so that it was 'up to' date. I have a lot of things going on with my health at the moment so I have been a bit less motivated but I am trying to get back into writing my poems as they help me cope. I hope you all enjoy them and if you are experiencing the heatwave at the moment whether you are a doctor, nurse,  patient or anyone else please make sure you drink enough dehydration is very easy to get into but can be a lot harder to get out and can be very dangerous.

Thank you, everyone, for reading these and I really hope you enjoy them.

Delirium: A bullet to the brain!

Ok, so I don't normally put warnings on my writing because I think if you come here you know what to expect. It is after all a blog/poem page about my medical life. However, this poem is a little different and being at least slightly self-aware I know that my experience may be upsetting to others.

If suicide or self-harm topics will cause you distress or upset please stop reading. If it is a topic you are not comfortable talking about or do not feel comfortable with do not read any further. Have a lovely day and please understand that the experiences that follow are mine and are from my delirium. I did not actually do them but I believed I did in that state as I thought it was the best thing to do at the time. I am safe, happy and not a danger to myself. Thank you for your concern it is greatly appreciated and I love every single one of you. Scroll to find the poem I am putting a large block of white space in an attempt to make it so you don't read it accidentally when you don't want to.

Resources Regarding Delirium NB. these are endorsements and my recommendations:

http://www.scottishdeliriumassociation.com/
http://www.criticalcarerecovery.com/

TW suicide and self-harm

Delirium is crazy it makes you insane,

Believing things that make no sense,

Being hunted down worldwide by nameless foes,

Being held down in water drowning to death,

Brought back to suffer some more.

Cut open and made to bleed from my wrist,

Suffering for information I won't give,

Put in situations designed to cause harm,

Put in a freezer to try and kill me.

Shock probes in my arms to force the truth,

But in my defence I was absolute,

I would not betray the safety of my family,

I would not give in to those who harmed me,

They have so much to live for and achieve,

So Stalwart in my resistance and belief.

The toll it was taking in seven years,

Poking at my weakness and vulnerabilities,

Breaking me down with time I sensed,

Found a gun and put it to the side of my head,

Pulling the trigger hoping for death,

Keeping my family safe with the last act,

Time slows, the fire burrowing deep in my brain,

Then darkness for a second, then back to hell again.

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Hey guys thanks for reading I hope this gives a more in-depth idea of what delirium is like. It was the worst time of my life and I hope you can understand these types of experiences and why they can cause mental health issues. Delirium is a nightmare you can't escape or tell it is a nightmare. I am three and a half years after my delirium incident but it still affects my mental ability, thinking and concentration. It is not a joke, it is an extremely serious issue.

My Immune System

Its an oxymoron in reality,

Low counts with hyperactivity,

Low numbers but massive self-damage,

Weakening me to all sorts of infection.

White cell count constantly on the floor,

Count of .8 rarely more,

Prophylaxis administered to keep me safe,

Every runny nose or sore throat, a terror in my soul,

Every coughing person a threat to my life.

Reclusive I became as safety was my aim,

But mental health can't survive when left alone,

So, balance the risk of socialising I must,

Hand gel and hand wash my soldier in defence,

Reducing contact, another field of the fight,

Choosing carefully where and when I commit my life. 

For 2 years I was asked what chemo I was on,

As that was the logical explanation for my plight,

For the risk infection posses to my life,

Why I can't have live vaccines ever in my life,

It is easy to laugh and easy to joke,

But the simplest of infections can land me in hospital,

If even a day I delay, In ICU I might end up laid. 

My Friend: Kate

My Friend Kate, Isn't she great,

Helping all those patients rehabilitate,

With Hovis the dog and a dam cape,

Battling Delirium in her ICU,

Fighting for the garden for all to recuperate.

Bring positivity and bright light,

To all those who help in the rehabilitation fight,

Lightboxes distributed freely with joy,

Even gave one to this here boy.

Helping promote causes close to her heart,

Working really hard to mend what's torn apart,

Bring joy and happiness to everyone,

Bringing positivity on twitter I see,

Now in charge of @NHS for a whole week.

All those #RehabLegends being brought to sight,

All the hard work for all to see,

People working hard helping people like me,

Bring the NHS social Media might,

To show all the great people working into the night,

Every single hour of every single day,

Superheros of the NHS are saving the day.

Ok so this poem is about Kate Tantam I Have never met her in person but she sent me the lightbox you see on my twitter account. I really appreciated it, I don't do anything for acclaim but it is always nice when someone says your doing a good job. In fact, in this case, it brought me to tears, it was an act of kindness which touched me greatly.

I have not been feeling very creative the last few weeks so I had been thinking of ending the #MarksWednesdayPoetry but the last two weeks I have got inspired the day before. I hope you still like these but I can't see it happening weekly anymore as I am all creativitied out :) 

Pleasantly Confused?

Pleasantly Confused?

As a term leaves me utterly bemused,

Your lack of understanding can be excused,

With my words, this explosive term will be diffused,

It's not your fault this term you've misused,

A little understanding of the term I'll infuse.

Pleasantly Confused?

I was neither you see,

Delirium's not fun in any which way,

In a constant state of fear all day?

Absolutely certain I was being harmed,

Absolute clarity in the pain I was dealt,

Every single cut, every terror-filled moment felt.

Pleasantly Confused?

I'm absolutely certain you tried to slit my throat,

Wonder why I don't trust you?

Would you, you are my jailer, my abuser,

Confused, why your help is refused?

Pleasantly Confused?

I'm not agitated or confused, I'm Terrified,

Just because you can't see it doesn't make it less real to me,

Just because no blood test shows it doesn't make it less real to me,

Just because you don't understand it doesn't make it less real to me,

You understand other illnesses so why not Delirium?

Ok So thanks for reading the poem, Delirium is a very serious issue, as you will all know I had ICU delirium. So when I hear the term confused I get very angry, it speaks to a fundamental lack of understanding, now I get that the education on delirium hasn't been great and as such the medical profession has been severely let down. But you can help bring about the change and get rid of this term being used, Delirium is not a dirty word or a death sentence. Use the 4AT, CAM-ICU, CAM, DSM-V or whatever tool your hospital uses, speak to the trained people in diagnosing delirium. Everyone is on the same team, noticing, diagnosis and treating delirium can have a huge impact on the after-effects the patient suffers. So, please help make the world a bit better for Delirium sufferers and survivors.

SIGN created an excellent guideline which gives a whole host of extremely useful information:

https://www.sign.ac.uk/sign-157-delirium.html

Pressure

Choosing to help is a wonderful thing,
But extra baggage it does bring,
Hold other peoples problems is a heavy task,
But friends help each other through thick and thin,
In the lightest and darkest days,
Soring high and surviving the lows,
True friends never come and go,
From beginning to end.

Stresses and strain are a burden on the soul,
Supporting each other with our strengths,
Covering our weaknesses protecting from hurt,
Growing together improving our worth,
Stronger together than ever apart,
Building together a better world.

We band together like Carbons in Diamond,
Bonded together with the pressure of life,
More valuable together, greater net worth,
Survivors together surviving our curse,
Making things better for those who come after,
Positivity and support our true masters

Blood Draw

Viens healing after years of blood draws,

Scarring formed from excessive abuse,

Pain growing with there ever use,

These blood tests needed to decide my fate,

Doses and drugs affected by their results.

These simple tests saved my life,

Found conditions before symptoms,

Identified conditions when our hair we where pulling,

Found my complexity and genetic issues,

Autoinflammatory issues hidden until the blood draw.

The Dark Red liquid as valuable as gold,

The loss of it in large amounts fatal,

But the gift of it in Pints a noble cause,

Many units I've had, Thank god for every donor.

If you are ever wondering what the greatest gift is?

Donating blood is high on the list,

Saving a life every 2 months! Woah that's great,

I owe my life to donors giving me my life,

Without a thought saving people like me.

Those bags famous on TV  as if infinite,

Misleading facts, Blood not wanted to run out,

The kindness of strangers keep those in need alive,

When down fighting for your life the gold heaven sent.

Blood giving the strength to fight,

The energy as well as protecting organs from its lack,

Life restored in the worst of cases,

Now let's talk about White Gold aka Platelets,

Stopping bleeding in those without,

Stopped me bleeding to death from ITP,

White and Red gold, Life-saving, a Most precious gift given.

Hey guys, I just want to say, anyone who is reading this and has donated blood, thank you from the bottom of my heart. That act probably saved someone's life, that is a fact, you are a hero. There is no measure of the value of that gift.

If you haven't given blood I would implore you if you can give blood please seriously consider doing it. If for no other reason than if you were in an accident you would want there to be your type of blood ready for you if you needed it.

If you are in Scotland you can check here to see if you can give and where here: https://www.scotblood.co.uk/giving-blood/

England: https://www.blood.co.uk/

Wales: https://www.welsh-blood.org.uk/giving-blood/

Northern Ireland: https://nibts.hscni.net/donating-blood/where-to-donate/

American Red Cross: https://www.redcrossblood.org/

Thank you for reading, I hope you enjoyed the poem and maybe consider giving blood if you haven't already.

Roleplay

Everyday masks we do wear,

Everyday roles we do play,

In every way guarded against harm,

Walls blocking insight and prying.

Keep them at arms reach,

At distance cause no harm,

Trust lets them past the walls,

Once inside they can stab your back.

Only the most loyal allowed in,

Only true friends see your pain,

Only blood see the scars,

They bear your weight in the need.

We wear faces for situations,

Strong for those needing help,

Calm in the face hate,

Stoic in the face of loss,

Love for those alone.

Everyday rarely we show our true self,

Trust comes hard to us,

Love sometimes gave too easily,

Self-worth underestimated.

Your Greatness, hidden even from yourself,

Society makes you think less of yourself,

You are worth a whole lot,

Never forget your loved and respected.

My Weakness, My Failing

Doubt creeps in my vision and thoughts,

My shortcomings more apparent,

Physically less able but mentally acute,

My body unable to keep up with mental ability,

My fight and drive powered by that taken from me.

With each passing year, I look at less and less of me,

The wounds and scars showing whats taken,

Every grey hair a reminder of the speed of time,

I look around me seeing the limitations imposed on me,

I entrench myself trying to do what I can.

But my naivety led me to think I would be unmoved,

The deeper I dug in the more taken from me,

Youth blinded me to the cost of my obstinate belief,

Unseeing that stealthy little thief,

My Immune system weakening me laying me bare,

For that infection that took my air,

Took my mind and nearly took my life,

But it lit a fire in me to keep fighting regardless of strife.

My body doesn't like me,

It keeps trying to kill me,

Attacking my organs with impunity,

Ileostomy what's left behind,

Scars growing in number, taking over my skin,

These are my failings for all to see.

‘ARDS times

I used to make jokes about my own health,

Got a good heart and lungs and little else,

It was how I dealt with my life and the hand I was dealt,

It was my anchor the thing to be proud of,

My powerhouse intact, pristine.

In my recovery my weakness and shortness of breath,

Put down to the battle fought and won,

Recovery takes time and ICU takes much,

I thought it was just a phase, I would be strong again,

But unknown to me the ARDS I had in ICU took more than I thought,

Scarred what was pristine,

No longer untouched, no longer fully functioning.

On the PET scans it was shown,

 But only in the forth report it was written,

Only on review of my letters was I aware of ARDS,

Time to adapt again, time to change, time to overcome,

Let down is how I am feeling.

Blindsided by my lack of knowledge,

Left unprepared, left worrying, left broken,

The power of knowing my body taken away,

Left to think that my recovery is just slow,

When in fact it will never be done.

But good friends’ and family support I have,

They will hold me up when I am down,

Pull me up when I fall,

Love me even when I do,

In spite I will keep on living,

Keep on writing,

Keep on talking,

Keep on advocating.

A day in the life.

A patient Poem.

Eyes open survived another night,

Eyes adjusting to the daylight,

Brain engaging am I alright,

Is that pain an ache or much more,

Am I hot or running a fever?

Is the feeling in my throat just dry,

Or is it an infection,

Will it send me to the hospital?

When I stop reacting sure it will,

Hypochondriac or just really ill.

The worry sitting in my mind like an enemy,

Whispering in my ear that the end is near,

Telling me that feeling in my stomach's a twist,

That pressure a blockage soon to appear.

Doubt covers me like a blanket holding me in the night,

Telling me worst tales through my slumber,

Will I see my next birthday I wonder?

But in these last few months peace, I have got,

The doubt proven wrong, in the hospital am not,

Stability and safety in my health I have found.

The defences ICU had quickly ground down,

Refashioned, replaced but very different now,

Not so rigid or inflexible my walls I have built,

Flexing with the stresses of life,

No longer broken. 

Reflection

In my mind I’m a hybrid of my 18 year old and current self,

Without scars but in better health, happy and looking content,

But in the mirror when I gaze I see myself as I am, broken,

Broken, Battered and Scarred, life has taken its toll,

Conditions taken from me a great deal,

 Bowels shortened, scars in its place.

Now older and greyer and a little wiser is my fate,

Hair retreating and disappearing, my vanity gone,

My body broken, failing slowly, of its functions control I’m losing,

 Things not easy becoming harder, drive increasing, motivation growing,

Mission progress slowing with new energy in its face I’m stoic.

My new vision ever changing, age and time slowly shaping,

Time of a new battle, new mission, progress forming,

Excitement rising, achievement on the horizon,

Hoping change will soon be coming, things will be better,

In hope I wish progress speeding, life affirming goals improving.

Face mine but ever changing.

Aggravation

Frustrated standing at the sign,

I’m away at the moment all that’s noted,

Wondering what to do with my paper,

Watching a train departing aggravating,

The man behind the counter sitting counting.

On the train now elated making time now,

A friend comes on, time passes fast now,

Excitement building getting near now,

Off the train heading to my meeting,

Hoping for kindness as my greeting.

Meeting starting excitement building,

Sharing my story so freely,

Sharing everything making life better,

Arguing how to achieve it,

Forward existence of these tools.

Let us make things better,

For everyone

So like a whole lot of my poems they are written after something happens to me, in this case, I couldn't exchange my rail warrant because the person behind the counter was counting money. If I was just buying a ticket I could have used a ticket machine. So in my very passive aggressive way, I wrote a poem about it, I hope this helps you if you are having one of those moments when someone else is stopping you do something by inaction.

If you read this far thank you very much, If you came over from twitter if you reply with Honey Cola that would be cool :) I am just trying to see who reads everything :D Anyway Thanks for reading you are all why I keep publishing these, I appreciate the support it means the world to me and has helped me power through some bad times.