Your Workplace is my Prison

 You come to work got a lot to do,

Lots of paperwork for you and conversation too,

IV's to change, drugs to dispense, people to move,

Getting in your groove another shift to get through.

I wake up in the hospital again,

Looking out to my view, what am I going to do,

 I am stuck in the room feeling kind of blue,

Not feeling safe as even when asleep people intruded.

Here I have a question for you?

In someone's hotel would just walk into their room?

It would be kinda rude, that's true,

So what would you do?

You would knock on the door,

Give them a chance to answer before you came in,

When in the hospital patients have no choice,

You go home at the end of your shift,

But we're here till we're alright.

It's hard to feel safe in a place when your personal space is non-existent,

If you don't feel safe how can you heal?

It is where you work but its where we live,

We have no choice in being here so give us a thought,

We just want to feel safe in these hard times.

The Last two weeks

 This Infection climbing up to my liver,

Swelling the tube will this pain last forever,

Nauseous most of my time, will I be sick?

Is it the heat that makes me feel shit?

Antibiotics make me feel better,

Until something hits me hard,

Every time I have to overcome it,

Crawl my way back to normal.

Sit watching the TV anxiety screaming danger,

As I see on the internet all of that hatred,

My mind runs to my friends and those small-minded men,

Looking for an outlet for anger so offend.

Violence and streets filled with filth,

Their entire personalities spilth,

People who live small want to drag down those who don't,

Can't understand they have something they don't,

The drive and determination to dream big,

And the effort and hard work to achieve it.

Hate breeds hate it's not what I'm about,

We need to help reeducate,

 Put love back in their heart so we can be one,

Hopefully, we can recover and banish the negativity,

It's the only way our society will have some longevity.

Don't let this darkness take over your soul,

We want to advance together that's our goal,

Love each other like family,

Banding together as One.

The 13.8%

 I am sitting here battered and bruised,

I am sitting here wholeheartedly confused,

I am sitting here listening to the hate being spewed,

 I am sitting here wondering what I can do.

Do these people understand what we'd lose?

Do these people understand what they do?

Do these people understand Isolationism is bad for us too?

Do these people understand the cliff that's in view?

Whitewashing a problem solves nothing,

Hiding from reality will surely be discovered,

Why are we hate those who came to care,

I am and standing listening and pulling out my hair.

Why does it matter if they came from here or there?

Why are we so insular, why are we afraid?

What can we do to change this foul direction?

What can we do to correct or doomed course?

The '13.8 %' should have nothing but love,

They came here to care for us heavens above,

We need to reset this air of hate,

Replace it with love on this very night.

Immunodeficiency and the Pandemic

Its hard to fully explain in words what it feels like, I have had many challenges in my medical life, I was diagnosed with Autoimmune Hepatitis when I was 14. This was the first bump in a very bumpy road that has twisted and turned through a very unfriendly terrain. I have had times where my platelet count are 0, Neutrophils were 0 and a whole bunch of other fun things which include and not limited to an ICU stay and several bowel operations.

So after my preamble lets get down to how I am going to rephrase total and utter fear fest. So lets break down a day eyes open. A period of time is taken to check my equilibrium. Is everything ok, does something ache, does anything hurt. Then you get up, avoid the news and limit the type of social media you read. The news is a constant bombardment of SARS-CoV-2 numbers, deaths, hospitalizations. These are a constant reminder of the danger that exists. not just outside my house but there is a clear risk to me from people coming in from the outside, food coming in, groceries etc 

The Anxiety builds day to day as the numbers increase because the reality is that if I catch it it will most likely put me into ICU and I won't make it out. Now tell me knowing that reality how would you feel? How would you modify the risks in your life? For me I don't go outside for about 3 weeks at a time, I wear a mask outside and when I go for a walk I plan time and route where there is low risk. It is easy to find yourself quickly a hermit after all the lowest danger is inside without exposure. However, I cant do that because of my health, I have had to see a lot of Drs in person over the last year. I also have to get outside every so often so I don't lose my mind.

So how have I avoided losing my mind, bold of you to assume I haven't, but there is a few things. I used to go to a weekly wargames group, we have two groups I am a part of from that group where we play various games every Sunday. That has helped a lot, talking to my friends online people like Heidi Lindroth, Miguel Rodríguez-Rubio, Kate Tantam, Segun Olusanya and Megan Hosey. That helps flatten out the anxiety and keep me able to manage it. 

Daily life is tough and I am not saying I am having it harder than most, there are Doctors dying to Covid for doing their job. That said I am not going out and things are not normal and its a weight on me. It is an anchor on my neck and its dragging me down and I am swimming as hard as I can. With my friends and family I will make it out but like after my ICU stay I am not going to be the same person I was, I can't be. 

 

In Covid times I have developed another immunodeficiency disorder which also causes painful abscesses Hidradenitis Suppurativa. Another issue eating at my resolve and having been found in Covid times it has meant seeing a specialist has been extremely slow. That in itself is causing anxiety and is adding to the burden already weighing on my soul

WDAD 2021

As I sit my world delirium awareness day is closing,

Trying to wrestle with the questions it is posing,

Wondering what delirium care will look like in the years to come,

From these complex problem we must never run,

We must battle them all together as one.

Delirium is a problem so vast in scale,

It cares little from which shores you hale,

It takes every opportunity to make you fail,

It can break you down make you weak and frail.

Delirium has no master it affects all ages,

I’ll repeat that delirium cares not what your age is,

It will undermine your thinking regardless of strength,

Destroying confidence it’s first offence.

Delirium my enemy, My Moriarty, my nemesis and foe,

But I will stand here and fight it go blow for blow,

The tools in the fight are normality and homes,

Making them feel safe and protected a killing blow,

Delirium can be felled we have the tools,

Stay CAM, 4AT is your friend in detecting that which offends,

Once the fo4 is discovered, reorientation a most powerful tool,

Addressing the root cause stops you looking a fool,

Think  delirium: PINCH ME and TIME AND SPACE,

If you need mnemonics to help you in the race.

The faster you act then the more you can save,

The longer it goes on the more they are impaired,

Antipsychotics not proven to those that suffer,

Might keep keep them quiet unable to mutter,

They should be the last port of call but often first action it saddens us all.

This is my plea, I beg from my knees,

Don’t use agitated or pleasantly confused when it’s delirium you really should use,

It is not dirty to call it what it is, but it’s a disservice to call by anything but,

We have came so far in just five years, 

I’m so impressed by how hard work is done to end my fears,

I never what delirium to ever do unnoticed but sometimes it does,

So this is my call to action we must make sure that it won’t,

We must wrestle delirium grab it by the throat,

Expose it to the light and show it with hope,

That eventually we will live in a time with no need to hope,

To live in a time where delirium is rare,

When it is addressed as soon as it’s there.

Thank you to all the great advocates who started the ball rolling in delirium awareness and who keep it moving in the battles we have coming up. Thank you to every patient who shares their story to improve understanding of what delirium is. Thank you to every staff member who listens, who sees the problem and stands up in the fight against delirium. Thank you for your energy, time and drive to make things better. We will make things better and by the end of the Decade of delirium I hope and wish we make delirium so rare due to great practice and effective interventions that everyone knows how to handle it and get the patient back to normal.

Rare Diseases Day

 So today is Rare Diseases Day this is a big deal to me, it is a day set aside to highlight that rare diseases exist and improve to treatments as well as improving advocacy for these conditions. You might be asking yourself, Mark why is this day so important to you? or you might be we know why its important to you we have read some of your other stuff or follow you on twitter we know. But for those who don't I am a collector of Rare Diseases they flock to me like I am their puppet master. 

But seriously today is important to me because of the tireless work organisations like Rare Diseases Uk who do such a good job of making sure these conditions are known about and that a fully coordinated plan to address rare diseases. It is great work that they do, NORD the National Organisation of Rare Diseases which holds the database on recognised rare disease is another useful resource not just for identifying what is a rare disease but also telling you a bit about them, Symptoms, diagnostics, treatments etc it is a really useful resource.

So let's get down to the nitty-gritty why am I writing a blog, after all, my last umpteen have just been poems so why the divergence? Well it's simple, this is very important to me and needs to be talked about. So why is it important to me after all things are most important when they affect you right? So I must have a rare condition right?

But not just one? So I have 2, nope higher 4, higher, 6 nope higher 7? Yes I have 7 rare conditions and I hear you saying now am I still kicking about and the answer is simple I am held together with love and bluetack. So I hear you asking what rare conditions do you have Mark, Calm down I was just about to get there.

I have Autoimmune: Hemolytic Anemia; Hepatitis; Neutropenia, Immune Thrombocytopenia, Primary Sclerosing Cholangitis, Short Bowel Syndrome and Tinnitus. Now I hear you say Woah Mark you're so greedy why don't you let other people get one. Fair enough I wish I had not been so lucky to have all these issues but like a lot of things in life, there is brightness in even the darkest of times. Living with some of these conditions for nearly two decades teach you somethings.

What have I learned about having rare diseases? First sometimes it takes longer to diagnose than a run of the mill condition as things like Autoimmune Hepatitis are a diagnosis by exclusion ie they test for everything else and if nothing comes up then its that. This means dealing with a lot of its not X,Y and Z before you find out what it is. I am so grateful to all the researchers and Physicians who chose to work on Rare diseases and find new treatments for conditions that have small numbers of people affected.

I would say my rare diseases fall into two tiers the life-altering and Daily impairing. AIN & ITP are Life-Altering AIN makes me highly susceptible to infections meaning especially just now I am extremely worried about any infections going around and any fevers I get. ITP requires me to use a weekly injection which means I can never travel too far from home for more than a few days. The others are Daily impairing Short Bowel requiring Daily medication so I don't lose Litres of fluid through my stoma by slowing my bowels down. AIH & PSC reducing energy and increasing fatigue, intermittently leaving me jaundice and in sever pain and wondering if I will need a transplant. Last but not Least tinnitus its effects are more psychological the constant ringing means if I have to listen closely or if it is quiet I have difficulty thinking or concentrating.

Rare Disease can have huge impacts on peoples lives and often are not really understood by others which means considerations are not always given to their suffers. I just wanted to write this blog to give a little peek into what it is like to have multiple Rare Disease and the difficulties it brings with it and highlight the great work NORD and Rare Disease do to increase awareness and understanding of a whole range of Rare Diseases. Thank you for the hard work both organisations do, it means a lot to me as a patient and me as a human to know that there are people fighting my corner.     

Valentines Day Poetry

Roses are red, Violets are blue,

ICU's are overwhelmed so what can we do,

Stay Inside if you can, go masked if you can't,

Soon we'll get back to where we can hold hands.

Kisses and Hugs on our minds today,

But the NHS we can Never repay,

Sitting together with the ones that we love,

Thankful that we don't need to work in masks gowns and gloves.

This pandemic left us in a crisis, without direction,

But the time inside has caused some self-reflection,

We asked the NHS to save us and did it to perfection,

Talk about their greatness you'll hear no objection.

On this day I give thanks for those important to me,

Supporting me and never asking for a fee,

Friends who have seen my lows and still as real as can be,

There support not contingent and that's what matters.

Today I think about those who gave up special days to care,

Chose to look after me when I needed them there,

Who nursed me back to health so I can write in this chair,

So I can tell you these things while I breathe this fresh air.

Last year was so tough, and this ones not easy,

As I walk outside, I see people too close leaves me feeling queasy,

This stress getting too much for me but we'll make it through,

Hopefully, we get out of this pandemic and start over brand new. 

Hey I hope you enjoyed the poem, I know I have not been active on here but between health issues, working on the podcast and planning out other projects for World Delirium Day on the 17th March. So I have a lot of irons in the fire and I have been failing on a few of them. I have been taking time to try and deal with a new condition I have developed and trying to keep everything to the standard I'd like. So I am hoping I can get more regular on here with a Blog about my recent health issues and get back writing more poems about my life in healthcare and life in general,

I greatly appreciate your support even if it is just to read my poem that is more than enough, I am so thankful for everyone who takes the time to it means a lot. If you would like to listen to the podcast where I speak with top ICU healthcare practitioners about important ICU topics ICU Life and Recovery Podcast 

Is there a topic you would like to see me write a poem on next? if so please leave a comment and I will try my best to do it