The Evolution of Mark

Version 1(arrogant)

Born with a serious glint in my eye,

No in fact a terrible squint in my eye,

Dyslexia made Academia hard,

Struggling for each inch, each yard,

Cocky little dude who had it to easy.

Until 14 his life was pretty easy,

Doing well at school, no struggles,

Diagnosed with ulcerative colitis,

As well as Autoimmune Hepatitis,

This was his end he turned the light out,

He wasn’t equipped for the fighting.

Version 2 (Angry) 

Every three months in the hospital admitted,

Difficult to control my conditions,

Changing of pills and increasing steroids,

Rage building in my soul,

Part pills and part self hatred.

Hard to get along with,

In constant pain, lashing out,

Hard to live with,

But hard to be,

Conditions downward spiralling.

Till the fateful week where the bowl failed,

Blood running fast,

A wish to be dead,

Begging to end it all,

No fight in his souls.

He died no the surgical table,

Metamorphosis brought about a new age.

Version 3 (Mr Grit)

After the Surgery entered Mr Grit,

A fighter at his core,

Not stopped by twists, surgeries,

Nor ITP nor Neutropenia,

Going head long through every fight.

A kinder version but still hard on the edges,

Softening over the years despite the fights,

Helpful when you needed him,

Few friends but ride or die with them,

Until the 27th December 2015.

The date etched on my soul and my bones,

The start of the worst time in my life,

It was only a couple of days till I was fighting for my life,

The end of Mr Grit,

In the darkness of hospital recovery,

In the darkest of times spawned Mr Positivity.

Version 4 (Mr Positivity)

Modern Day Mark is so different,

Positive, supportive, Strong,

Undefeatable, different goals,

Different life, limited but not demished,

When down and out came the light inside.

Came the ability and experience to help,

Story laid bare for the benefit of others,

A part of my soul given to those who need the words,

A shoulder or hand given to those who wish it,

An ear to those who wish to share or commiserate.

A conscious choice to bring positivity,

To be as positive as can be,

If asked to help and able to, do,

A hand given because it’s right,

Knowledge shared freely.

Experience explained,

Turning the darkness into light,

Making the bad into good,

Staying positive when wounds turn infected,

Staying upbeat when life is affected,

Always looking back always reflecting.

Proud of who I am,

More friends now than I ever expected,

So very moved to be respectfed.

Hey guys thanks for reading, today is the 3rd anniversary of my admission that sent me to icu so after over coming my first panic attack in over a year I decided to set aside an hour to compose these and reflect on my life. I am so proud of the volunteering I do and I am so very humbled when I am asked to speak at events. I am so glad to have been given the chance to make my bad times into positives for other people and I am glad for each and everyone of you reading This because you have supported me in my recovery. My recovery from ICU will never be over as the after effects are still being felt and will no doubt linger as they have got worst with the passing years not better. I thank each and every one of you for your help support and love. I thank those who have asked me to speak, volunteer or help out, it means the world to me, you all know who you are.

Please feel free to comment or share 

With great joy

Mark

Terror on the horizon

The third anniversary

Terror in my gut is rising,

Gazing out my window at the horizon,

Dark clouds looming,

A storm is coming,

Steadfast in its way,

Girding myself for the fight.

My body wears battle scars,

My medals of victory,

Both pride and sadness,

Wars I’d rather not’ve fought,

Bitter sweet wins.

Broken, weakened, lifeless,

Death awaiting beside me,

But fight in me still,

Digging my trenches,

Readying for the war.

The battle done but the darkness remains,

Friends and comrades fell,

My sanity changed forever,

Memories gone never to return,

The darkness my friend my foe but never my master.

The 27th December is the anniversary of my admission which ended in my 3 week icu stay (17 weeks in hospital in total) I am so thankful that I am still here still fighting. I am grateful for the ICU staff at crosshouse hospital who gave me a fighting chance. I am thankful for the chance to volunteer with InS:PIRE and to speak at delirium conference in March. I have a lot to be thankful for and things I can still do, it’s easy to dwell on what we can’t do. I am aware that over the next few weeks I will be battling my inner demons but please know that dark Mark is still Mark he’s just got weights trying to hold him down. He will fight through it because I always do, just remember my friends that I love you and you mean the world to me. You teach me things everyday from POCUS to how to write poems to how to slay at podcasting or crushing it in making a new conference to promote women in medicine to the kindness I am shown everyday by you.

You been with me during my peaks Well now comes one of my troughs but remember we need the bad to appreciate the good. We need dark to appreciate the light.

My bowels, my surgery and my scars

Above is my abdomen at the moment I had surgery in August and it’s taking a while to heal so hence the dressing. Scar one is my original stoma site 0 was a stoma put in ~2010 it was placed as an emergency because I was bleeding profusely and wanted to die but it was the greatest thing ever because it stopped the pain of my ulcerative colitis and made me feel so much better I went from 60kg ish to about 75 kg and for 2 years it was bliss, I didn’t and still don’t like my stoma but it was a vast improvement. Then I started getting peristomal hernia and bowl twisting issues, I have had with that stoma maybe 8-10 hospitalisation with twists and two resulted in peristomal hernia repairs until 2015 when it was moved to site 2 now this stoma had no chance of surviving and it I am honest I am surprised it lasted as long as it did, it was another emergency move but one month after it I was in ICU for my coma time I went from 90kg down to 65kg (i’m 6’1” for reference) so all the muscle it was stitched to and relying on was wasted away. That brings us to site 3 relocated in late August 2018 it is December at this moment and it has not fully healed because site 2 got infected and went septic, ML my mid line wound which was about 10-11 inches long dehisced (burst open)leaving a wound 2 and a half inches deep and four inches wide. Thus it has taken a long time to heal needing the assistance on vacuum dressings and Iv antibiotics to treat the infection which undermined it in the first place. The reason the area around 1 and 2 is so saggy is that it was heavily herniated and I have lost 12kg so I have a lot of loose skin, my abdomen doesn’t have many flat places it is akin to the alps

Remember just because someone looks normal (and I do most of the time because of how I dress and the behaviours I use to draw attention away from it) doesn’t mean they’re not scars lying underneath. This trauma on me is easy to see once the barriers are removed but it’s exactly the same for all trauma we put up barriers to protect ourselves all you need to do is know how to look or what to ask. Whether the scars are physical or mental remember they are the result of trauma and are often hard fought for, they should be treated with respect and dignity. I am very anxious about posting this as the internet is often a nasty place but I think this might help some people so it is worth any shit that comes my way. Just remember people we all have scars never be ashamed of your battles and remember no matter how hard your fight there is always people to talk to even if it’s just on Twitter.

Capital Night

My trip to the capital quick and fun,

Till we got to the centre then the nightmare begun,

Round and round we go, tempers beginning to fray,

Driving around till day became night,

Thank gosh I only here for a one night stay.

Excited for the night out but equally frightened,

These people I’ve met once so kind and inviting,

I sit in my hotel anxiety building, 

The knot in my stomach slowly churning,

But my conditions will not stop me,

Nor will I let them define me.

Met them once but some feel like lifelong friends,

Funny how ICU can unite you,

That journey shared needs not to be spoken,

Each of us strong when formerly broken,

Unashamed, unafraid, unbashful,

Life is for living not living in fear.

They invited me even though practically a stranger,

Accepted into their group without reservation,

Fortunate to have such wonderful friends,

Blessed to have found them in my recovery.

How nearly dying in ICU changed my life for the better

So I know recently I have became the poetry guy and I like that because I enjoy doing it and some people like to read them but I have departed from my primary purpose, To use my story to shed light on what it’s like to be an icu survivor, a sepsis survivor, a stomite, living with load of autoimmune issues and battling mental health issues. I have felt that in doing things that where funny and less serious that it has taken away from the serious cause.

But less about my hang ups and back to why you clicked here, how can nearly dying be a good thing I hear you and every rational thinking person saying. It’s simple from a young age I wanted to be a medical doctor because I wanted to help people and there is nothing more important than helping sick people get better. However as I grew old certain things became apparent, my dyslexia coupled with a school system that refused to accept it as a problem made it difficult for me to achieve what I would need to get into a medical degree coupled with my diagnosis of autoimmune hepatitis and ulcerative colitis which put me in hospital every 3-4 months made it a steep uphill slope. But as anyone who knows me in real life or reads my tweets or my work here you know I am a fighter, this was no different I left school with 3A’s, 2B’s, a C in highers and a B advanced higher. I was acccepted into a highly respected chemistry degree, I pivoted to chemistry because it was something I loved and I thought it would give me access to working in the pharmaceutical industry as it could be my way of helping people.

The degree was hard and I scraped by and before my final year my colon gave out leaving me bleeding and pleading to die, I had my colectomy and completed my degree but it took its toll on me. I had two good years where I worked for a large pharmaceutical company before I started having twists and peristomal hernia repairs. This was the start of my healths downward spiral which you can read about in my first and second posts. But it lead to my ICU admission which had me in an induced coma for 2 and a half weeks and a total stay of 17 weeks in hospital. I suffered from delirium, depression, anxiety, ptsd, muscle weakness, fatigue and cognitive and memory issues. My family where told multiple times that it was highly likely I was not going to survive because they had no idea what was wrong with me; spoiler I didn’t die incase you where wondering but my brother put it best when he told the doctor, “You don’t know my brother as long as his heart is beating he will be fighting.” And I won the fight but I can hear you thinking, ‘Mark I don’t see how this made your life better’ ok ok I am getting to the point but the prelude was needed to explain why the next bit is so important.

So being an ICU survivor has opened opportunities that where not available or even possible to think about before hand. I was asked to be a peer volunteer for InS:PIRE a post icu rehabilitation clinic/service, I got to help people by sharing my story. I’ll say that again I got to help people and not in a small or casual way my input was welcomed by the staff of the clinic and helped some of the patients to realise that what they went through/are going through is normal. This role is the single most fulfilling job I’ve ever done, I have worked for charities and other non profit groups but no feeling can match a icu survivor coming up to you and shaking your hand and thanking you. No money can match it and no feeling can get near it.

As a somewhat active advocate for improving icu and post icu care on Twitter I have networked (a term I hate) with other icu survivors like 

Mitochondrial Eve and post icu researchers like ex ICU nurse Dr Pam Ramsay as well as having world leading experts in ICU care thank me for sharing my experiences or giving my insights. It is amazing me, who is just a guy in Scotland with no special medical training or education is being treated as an equal/peer by Dr, Nurses, Occupational Therpaist, Physioterrorists (our affectionate term for Physiotherapist, since they terrorise patients to get up day one after surgery :)) etc from all over the world people from Spain, USA, New Zealand, Chile and Canada are listening to me? I am not special, I am no different from any other survivor but one of the stoma care nurses explained to me that I was willing and able to speak about my experiences and did it in an eloquent way. I thought well I am glad I fooled someone because I got a C in higher English and get anxiety about talking in public because as a dyslexic person I was often force to read aloud from books in English class. I have improved greatly since my school days but I don’t think I am a great public speaker, passionate but not great.

This brings me on to my next point through my poetry on here, my activity on Twitter, Pam who never met me and didn’t recognise me when we first met (sorry Pam) invited me to speak at a post icu event, creativity in post icu recovery. Now I don’t see myself as a really creative person, I wrote poems because as you might tell from this post I can go on a bit but poems concentrate my points down, they help me to convey the serious issues I want to address in bite size chunks for busy people like Drs and nurse to read. I was asked to speak because twitter let people outside my hospital know who I am and my work was powerful. I spoke at the event with other survivors, PhD’s, artists, international rugby player, Nurses and others I can’t remember all as equals no one was more or less important. At the event other survivors came up to me and said they where moved by my poems which was a great feeling. I have been asked about speaking at a conference and potentially working as a ‘patient expert’ in research and I have volunteered to be a patient reviewer for the BMJ.

None of these wonderful life changing experiences would have been open to me if I had not nearly died in ICU, I can’t go back and change my life so I was never in ICU and if I could I don’t think I would because I am who I am today because I survived. I like who I am today. The person I am today makes a difference, it might not be in the way my six year old self expected to but it doesn’t lessen it. I get to help people there is no greater thing in life than to help your fellow humans.

I have a motto for my medical life: survive, adapt and thrive. You can’t change what happened to you but you can make the most of it and be the best you can be.

Going home: fear of leaving.

Going home

Going home is a mixture of excitement and fear,

I don’t know what will happen when I leave,

Could it happen again, could I be back in days?

Going from watched every hour of the day to alone I go,

Fear is reasonable but unsettling.

Going home is a sign of improvement,

Reaching the final stage of recovery,

Returning to family and friends,

Normality scary but still progress,

Time to rest in my own bed.

Discharge coming but support needs to be in place,

Daily nursing visits must be arranged,

Special dressings ordered to come home with me,

Vac pump prepared and arranged for the journey,

Nearly got everything ready to go.

This is not the end of recovery but a new chapter,

Long hard weeks lie ahead,

Wounds that open waiting to heal,

Weakness I must battle an opponent unseen,

But victory I will achieve is what I believe.

Going home after hospital is a scary thing, especially after emergency surgery like I had because it’s possible it could happen again. Patients might be glad to go home and I am too but there is a bit of fear too. Reassuring patients that support is thereafter hospital is key to reducing the terror of going home. So this post got lost in the ether somehow since my surgery both of my wounds became infected, my old stoma site became septic. When I wrote this I didn’t know what was coming but I was prepared for a fight because after surgery I always expect the worst. Leaving hospital is usually a relief for me because I am usually healthy enough but this time it was simply the hospital was a dangerous place for me with my immunodeficiency. I returned home very weak with the need of assistance to get out of bed in the morning as my abdominal muscle was weak, I required dressings to be changed, food made for me and help to change my stoma bag. I have sacrificed a lot of things in my life: my dignity in needed to be bed bathed in my ICU stay; my freedom as my immune system means large crowded areas are dangerous; my self-image the scars, procedures my body has endured has shattered any love I had for how I look; my ability to work ‘hard’ my conditions sap my energy they bring me to my knees sometimes I used to be a great worker now I have to manage my time and how much I do so I’m not fatigued for the rest of the week.

This has been a struggle it has been nearly as hard as my ICU journey because I bounced back quicker from ICU even if I started from a worst position but the wounds and my weakness have set me back a lot but I am glad to say I can see the finish line in sight, my old stoma site is nearly completely healed and the mid wound is very shallow hoping to get it ‘scabbing’ soon.

Ode to a Bacon milkshake

Ode to a Bacon Milkshake

Oh your sweet and savoury goodness,

You fill my soul with rejuvenating energy,

People question your worth but your greatness is for all to see,

You flakes of bacony pieces breaking up the blandness.

Everyone I speak to about you rebut me as if I’m crazy,

But when they taste you their mind is changed,

It’s wonderful, amazing, incredible the words that leave their lips,

Once you have hit their taste buds they can not resist.

You are soothing in the bad times and comforting in the good,

You gave me drive in the darkness,

You gave me an icebreaker for meeting new people,

But most of all you built me up when I was weak.