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 

Overwhelmed

 Lockdown has got me knocked down,

Every day seems more than my lot now,

Every new stress seem like a weight that will break me,

Everyday straining to stay sane,

The voice in my brain tells me it too much pain. 

But every day I open my eyes, get out my bed a victory,

Every step, smile, every day a parry of the attack,

My riposte the words I write in an attempt to defeat this foe,

But Being Diagnosed with HS was a heavy blow,

Buckled my knees and dove me to the floor.

A victim of a Drive-by Diagnosis,

It took all my strength to make it to my car,

A force of will I am known for,

Left to find out about the Condition from the Internet,

This is not how it should be but how I was left.

 But I don't have time or energy to be sorry for myself,

Got to move on and cope with the stress,

The situation ain't going to change, so got to knuckle down,

Got podcasts to make and verses to write,

Emotions to release the only way I know how.

This Pandemic is like a pressure cooker,

Some people are withering under the pressure,

But all those Healthcare worked and forming diamonds,

But what those that can't cope don't seem to know!

Is even in this crisis you are never alone,

If you need help please reach out,

If it's just or a chat or something more,

There is lots of support even more than before.

If your feeling really down and don't know what to do,

Speak with anyone and tell them what's up,

Because in the end, we're all here together,

And we need to support each other till we make it through.

 

Burns Night

 Ah ma friend there sitting on the plate,

I know what will be thy fate,

As I pungle my dirk in, ye're innards seep out,

The fleshy tomb you were encased, slowly cut asunder,

I look upon you laying there with guilt upon me face,

I look upon the flesh as it lay with a hungry gaze,

My mouth a' salivating as I ruminate your fate.

Your flesh in my mouth such the sweetest of taste,

Ah that taste it has been too long to once more taste,

The spice bringing warm as it travels to its final home,

Ah my friend this will be but our last meet,

Alas unless I once more find myself weak.

I look at you upon the plate the King of foods,

The uncontested great sitting there with your two mates,

Those mashed friends both of ground,

 Who found their place at your side,

They sit there taking the back seat,

Sitting there both tattie and neep,

They mellow the spice and enhance your taste.

I look at you my fair national dish,

Alas I have but one more wish,

That I may once more taste upon your flesh,

 Without the worry of distress,

Without the fear of what will come,

To sit at that table and fill my tum.

For those who do not know January 25th is Burns night and while I lack his ability to write in scots this is my tribute to the greatest of Bards. He is the inspiration for oh so many Scottish poets as he is often the first poet whom we can relate to through our schooling as while Scots has mostly been folded into our dialect of English we can understand the words he says and they speak to us. I hope you enjoy this poem and understand it is a homage to the Address to the Haggis. 

My Inspiration!

 Healthcare Workers,

You Inspire me,

You've been asked to do so much,

You have done it and more as the burden increased,

You inspire me to push through,

Get to those greener days.

We will make it through because of you,

We will survive because of you,

I'm alive because of you,

I am thankful for the work you do.

Times are tough and to be frank, we have asked of more than enough,

It looks like the next few months will be rough but you'll get us through,

Marvel has the Avengers but in the real world we know our defenders,

Lots of people online acting, being pretenders, 

Posting on Twitter being offensive, being so goddam reprehensive.

The Stalwart protectors of our Health,

Despite the government keeping the wealth to themselves,

But still resolute when call upon to help,

The selfless dedication invested by the few,

So we can return home both me and you.

This is a thank you to all the healthcare workers who are doing so much and having so much expected of them by their employers and people in general. You are all doing a fantastic job and we owe a debt which can't truly be paid back. Your dedication to caring for patients and finding treatments and managements to help people make it through this Covid Pandemic is outstanding. The thanks may have waned from the people at large as the restrictions have left a bad taste in their mouths but I am more than aware we are being carried on your backs just now. I greatly appreciate the extremely difficult work you are doing and will have to do in the months to come.

In Short Thank you so very much 

2020 was Plenty

 Everything in hindsight is 2020,

Well goddam, I didn't know that meant bad,

Looking back at 2020 it wasn't all bad?

I started ICU life and Recovery of that I'm so glad.

Sure there have been hard times its true,

I don't need to explain the big one to you,

For me infections in the dozens,

Those took a massive toll on me,

Sepsis and surgery wore out my soul,

Pain for a month the side effect of one,

With 2020 I am more than done.

The year started alright,

A conference with a friend,

Standing on a stage once again,

But as the year progressed, more reclusive I became,

Wondering if I'd end up in ICU one more,

At my mental health, the anxiety tore.

I watched from the sidelines as my friends worked so hard,

I sent them some words to those near and far,

Working on projects to aid there work,

Looking on at these people who never seem shook.

Even when society is hitting them with a right hook.

2020 has been a testament to the Healthcare Professionals Work,

Relentless is there efforts, monumental there task,

But as always they seem to have kicked ass,

They risk their lives every day in a hundred different ways.

In 2020 we have seen the greatness in humanity,

But also seen people who sent me to profanity,

People so selfish and incredibly dumb,

Refusing to wear Masks when its rule number one.

But end this poem on a positive note,

While I don't think 2020 will be winning any votes,

I've seen who my friends are and that gives me hope,

So thank you all every single one,

This Hell forsaken year is buried and gone.

Podcast Gif

Hi so I was trying to make a gif for my podcast ICU Life and Recovery and it turns out it's pretty hard to make it to GIPHY or twitters standards as the file size limit is so low so I wanted to put it here with the original video format just to show what I am trying to do:

via GIPHY

Sorry for the low res It is better on Giphy if you click on it but it's just the same as the video 

Hope you like them if anyone has any advice or tips please comment and let me know.

So I have been writing pocket poems that I have mostly been putting up on Twitter, but I thought I might put one here too:

I've spent my  life being told what I wouldn't achieve,

Never get a degree, Never be a writer or public speaker,

Not that bright barely read and write,

So I knuckled down for the fight,

No support from the schools I was given,

My own path to success I have written.

I'm never going to be a 'great',

I know that's not my fate,

I'm here to help others achieve,

To elevate and support.

I'm a team player, no hater,

Seeing my friends achieve greatness,

It's not time wasted,

To see them achieve greatness.