It's 03:20 am and I can't sleep. I'm thinking of writing a book!

Man it's 3:20 am and I just can't get to sleep. I have been lying on the couch all night, my stomach all upset and cramped up, andit feels like its on fire. I am down to 4 prednisolone tablets per day, having reduced them from 8 per day, they are for this newly diagnosed ulcerative colitis. I think the medication creates cortisol, so I haven't been sleeping well for over a month now.

I have always struggled to switch off,  nothing to do with medication. My mind is constantly whirring around, analysing this or debating that. Sometimes it can be very useful and help me problem solve, and then other times it can be a real curse, as I try to tell my mind "It's time for bed now".

writing an e-book

Over the years quite a few people have said things to me like " I think you should write a book" or on occasion "Have you ever thought about having a go at motivational speaking". I never really gave it that much thought, just thinking they were being polite when they had heard some of the experiences I had been through. Then lately I gave the book thing a bit more thought. As for the motivational speaking I am not sure. I mean I guess if I was talking about certain stuff that I had experienced, it's then how to get it out, and inspire, the whole purpose of motivational speaking is in the title "Motivation".

Getting back to the book thing, it will be a fictional book, not an autobiography, more of a true story or a memoir, I think they call it. I have been hard at work writing, well typing, I mean it is 2024 and feathered quills are not in vogue. So far I am up to just over 29,000 words. It is a very rough edit, with lots of grammar and spelling mistakes. It recounts part of my journey from taking ill at 27 with a giant cell tumour in my right leg, up until present day. The story is pretty full on, as I have been very honest and not held anything back. There are a lot of dark times mentioned and I try to explain my mindset during these periods, there are also happy times, funny times and a few stories about when I was growing up. I have included very personal things and shared some of my poems and songs, which some people I am sure will think are a load of bollocks, but hey, they are my words and thoughts, special to me so I am not too concerned.

I am by no means a professional writer, or poet, this is just something I would like to try, I guess for myself as much as anything.

The difficult parts:

There are a lot of things to consider when writing a book, for starters it is incredibly difficult writing a true story, and those people involved in that story not being named. If  I do include peoples names I have to then approach them, and get written consent.  I have met that many people over the years, it would take me forever to contact everyone and get consent. So I have attempted to write in such a way that not many people are named. Its a real shame as I would like to thank each one for their support and by naming them. There is nothing I have written that is defamatory in my opinion, a few funny instances I have recounted, that is about it.

Next is finding someone to proof read my work. I'm thinking this could be quite expensive and I write in a slightly unusual way, so don't really want my book changed and lose the essence of myself, if that makes sense. I tend to swear a lot, it is an emotive response, and I use a fair bit of Geordie or Durham'ite dialect, its where I come from and I am proud to have a pit village accent and I think it adds to the authentic nature of my story.

 

Writing a book and putting it online

Next on the agenda after doing some research is where to place the book. Amazon KDP, looks like the easiest way to start. I think I can use a company called Draft2Digital to format the e-book and then upload it to Amazon. The thing from what I have read here is not to go for Amazons Free ISBN number. The ISBN is used to identify books, however if I use Amazons free ISBN I am then tied in to only selling the book on Amazon. So I have looked into how to get my own ISBN and think it costs £93 per book. So it would be £93 for an e-book, then £93 for a paperback and again £93 for a hardback. Mind you the paperback and hardback versions are just wishful thinking I mean I may not sell a single copy, but that is the good thing about "Print on demand", I don't have to go out and buy lets say 1000 books and then have them stored at home gathering dust as no one is interested, and I don't have to package them and ship them off. Amazon or any of the other print on demand companies take a percentage of the sales and do everything.

And so that is where I am at. Hopefully if I do get to release my own book, it would get a good reception, not be considered too depressing and who knows inspire, even one person, or help someone to understand they are not alone. Thinking big, it might make me a shed load of money so I can follow my dream and get that house up in Scotland LoL

I don't claim to be a poet, a musician or particularly good at anything other than being me.

Just Me

As my blog title says, " I don't claim to be a poet, a musician or particularly good at anything other than being me". However, if you would like to comment, good or bad, please feel free to do so, either way, negative or positive, it will inspire me to become more creative, I guess.

I have been practising and learning to play the guitar for roughly 2 years now. I don't know if it is because I am relatively old to start learning new things, or I am just plain thick. However, I am not that good. The thing is, whilst I would love to be able to play any song and, if the fancy took me, be able to go on the local streets and busk to a great reception from an audience, I don't mind just trying my best and messing around with my various guitars. It brings me great joy, relaxes me, and takes me away for a little while. It has even helped me become creative and I have gone on to write what could either be considered songs or poems.

Parts of one of my songs/poems have been incorporated into the short documentary film I was invited to take part in, " Meet The Local Hero - Glenn Johnstone". I had to try and read the poem out loud and record my feelings about my words so that it would give a good representation in the film. This was a bit more difficult than I first thought, so I took a few takes. However, I was happy with the final results as was Dragos the director and Filmmaker.

Here is the poem that I wrote in its entirety and parts of it were used in the film.

Dark Thoughts

Thoughts so dark inside of my mind, Questions of how did I end up here.
No escape I'm so scared, locked in and trapped here, inside my head, it's a deathly tomb.

Imagination creates a barren wasteland, played out in black and white 
I try to flick my inner switch, to seek a corner and hide away.

Numb to the core, Can't sleep, Don't speak I think I'm losing my mind.
A dark chasm lies before me, an abyss to steal all hope away.

Suddenly I'm at its edge, if I fall now I'm forever lost.
The wind howls its wicked threats, it tries to push and I push back.

Ruinous shadows, malignant monsters, who reach out for me.
The call goes out to my inner white knights, to gather forces, charge in on horses. 

So much pain endured as this fight rages on
Thoughts of survival, good versus evil, then I see a light in the darkness, 

It's an epiphany, that comes to me, a thought inside my mind the light shines warm and kind, it comes along to help me escape this place.

The words describe how I was feeling, probably at my lowest point when I was ill with my Right leg in 2006/2007, just before I had it amputated in September 2007, It's funny how memories stick with you and can create something out of a negative experience.

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Next is a Poem/song about my dream of getting away and that house I always go on about in Scotland.

A Dream of Getting Away

The grass lying here it's all dead right here under my feet / I live in the pure hope that one day  I'll escape.
I let my eyes close shut, and I drift off to sleep sweet surrender it's now felt as reality gently fades.

A seed planted so deep whilst I'm in my sleep tended to with so much love to bloom into life.
Wandering around in my mind filing cabinets store my dreams only opened by me  I have the secret key.

A favourite dream is found it's formed in my mind. Stored safe in this place each day it's where I am happy.
I find myself beside a loch shore it's calming / tranquillity / found there  it's good for my soul.

Washed up on the shore each pebble a dream so many lay there which one to choose.?
Pebbles polished by time carried by ebb and flow picked up and now treasured a gratitude stone.

A tartan land is where I really long to be, the beautiful  Monroe's the lochs and all the trees.
I picture a wee house a place I can call home, no stresses or worries I rest my Weary Soul.

Now I'm inside my house lying there on the couch my hand on the wood floor the house whispers you're home.
A log fire burning giving off a warm glow the flames casting shadows which dance all around.

Now I don't drink  whiskey but here sits a wee dram it came from a local distillery right here in town
A record is spinning an old vinyl relic a forty-five playing knocking out an old tune.

My own piece of heaven  I carry it deep within, will this dream come to pass only time will reveal.
Tomorrow I'll return and play out this same scene in the hope that one day my dreams will all come true.

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This next poem is kind of sad I guess, it relates to being isolated and the feeling that you are all alone. It's just a short one.

It's called 

When You're All Alone

When you're all alone, and the only hand, to hold is your own, feels like no one cares.

Building walls so high what's there real purpose To protect your heart or to save your soul.

Don't want to be part, of the rat race, rather be alone, and do your own thing. 

Just like an old toy, Worn torn and threadbare, maybe lost an eye, or a missing limb.

Lying rejected, in a darkened place, questions in your head, will it be okay.
Always feeling lost, like you don't fit in, trapped inside your mind, why so critical.

Learn to love yourself, value who you are, we're not all the same, you're the only one.

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Next, we have a poem/song I tried to put music to this one and it's called simply 

Ride

Warm golden sun on skin, radiant light reaching deep within.
Where should we go today?  

Then a beautiful place comes to mind.
A tranquil woodland, not far away, it's so magical.

Lost in thought feeling free, searching for flowing lines between the trees.
Tires bite, dust rises up, with one foot down drifting a bend.

With a mind so crystal clear, all stresses fade so far away.
Passing trees, at an epic pace. It feels so good to escape the daily rat race.

Dry fallen leaves scatter the ground, riding through them a susurrus sound
Blue skies way up above flared light through a broken canopy.

A jump, a drop skidding to a stop. The chance to take in this Arcadian scene.
The songs of birds, and their melodies, are carried on the warm soft breeze.

A flowing stream, discovering its path, meandering this way and that.
Nature doesn't need words, it speaks directly to your heart and soul.

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This one is about, well I'll let you make your own mind up?

Beauty Lives In Scars

Beauty lives in scars fading in time memories live on a story of who you are.
Nature of your thoughts find happiness where's it hiding come out let's go play.

In a room that's full of thoughts that creep in invisible lost and lonely, no one knows.
Tilted screens are viewed unconscious minds don't care to find the truth behind what they see.

A life not to plan you're compass is broke you can't find your way darkness drawing in all around.
Sending up a flare high into the sky, hope someone sees hope someone cares about you.

Mountains in your mind, they block your view and fill you with fear but once conquered the view becomes clear
We all have our scars some are on show some are hidden from view some of them run so deep.

Beauty lives in scars.

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This one relates to the 5 stages of grief.

5 Stages

Denial 
                             
Everyone losing yesterday,
all of those Memories of better days.
Time passes by so slowly, waiting for the great unknown. Denying reality,
wishing things were back to how they were. Just turn off the lights, Just lock the doors. Pretending it's not happening there is no one home.


Anger 

It Feels like a really bad storm inside of my mind. I'm So angry all of the time.
Emotions at breaking point, with rage leading the way. A hurricane tearing at my thoughts I have no say.
I can't see through all of this red mist,
so much confusion I feel so lost

Bargaining 

Is there a deal that can be made, 
with either heaven or hell.
Bargains are offered but to what end,
all of my words fall on deaf ears.
Fate conspires at each turn,
an unwritten contract I cannot burn.
Praying for change, all of my dreams  turning to ash


Depression 

Those days that I'm feeling down,
this black dog  Follows me all around.
Sometimes big, sometimes small.
This sombre hound is no friend at all.
The most dangerous human concepts
are hope and faith which are both lost on me.
I suppose something has to be lost,  
before it can be found.              


Acceptance 

Time the great healer or so they say.
Searching for happiness, putting grief away.
Learning to accept the things I can't change.
Searching for answers, finding brighter days.
Learning to be honest / with how I feel.
Looking to the future embracing change
Just like a Phoenix born from ash,
I will rise  I will shine.

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I wrote this one whilst lying on my bed looking at my dream boards LoL

I hadn't thought of a title until I just started writing on my blog, so I will just call it.

My Mind Goes Astray

Lying here my mind goes astray
The world around me just falls away
Lost in pictures that I have pinned in place.
Colliding thoughts I lovingly embrace.

Old pictures with their dog ears
Worn and faded they tell a tale.
A story of where I can touch and feel
A story of where I'm supposed to be.

Three pieces of paper with famous faces,
A Queen that's passed and Alan Turing. 
Superman looks on with words of wisdom, he provides a plan not to become a victim. Find the hero in yourself, just try to do your very best.

A special necklace of sapphire blue 
an old ruler I rescued from a fiend. 
It's now retired seen better days
Pinned to my dream board it now stays.

A cheque made out to pay myself
The Promise of Imagined Wealth.
Paws prints from an old friend
A special reminder above my head.

A Poem to remind me to dream by day
Another to believe dreams can come my way.
A guitar that when played sounds blue.
I must learn to compose a happy tune.

Just a few things that I see each day.Things that have meaning to me in a special way.

Buddha and Buddy Christ sit on my shelf with a thumbs up and a happy smile they have real style.

 

Oh and did I mention the Geese?

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Yes, there are probably lots of spelling and punctuation mark errors, and probably the wrong format for poems, ahh who cares I just enjoy writing, it's good for the old mind.

Like I say, feel free to comment, you know I say that and I can see how many views I get, however, people rarely put a post back. It has me thinking is something broken upon my Blog other than Me Lol.

I maintain the rights to all of my work, so don't go nicking them lol

Go Fund Me to help with some of my prosthetic needs.

 For the regulars that visit my blog you will know that cycling is a huge part of my life, and wellbeing. You may also know that I have been very fortunate in the past to receive a lot of support from various people, clinics and a foundation close to my heart Arctic ONE.

Unfortunately due to one thing and another I have found myself in a position where I am now having to self fund my prosthetic needs and as you can imagine this is very expensive.

I have been struggling for well over 2 years for instance with socket fit and lost a great deal of time off work due to this.

My old Bartlett tendon Generation 2 is wrecked, so I have had to self fund a refurbished Generation 3 Infinity Knee. I simply couldn't afford a new one at almost £8,000.

  

I am very fortunate and count my blessings that I am able to work, save and continue to follow my passion, as without it I hate to think where my mental health would be.

In the past I have endeavoured to complete various challenges and support charities such as Cancer Research UK, Help for Heroes and Arctic ONE.

After much thought I have decided to start a Go Fund me page and see if anyone is willing to help me out a little with the expense of my knee and maybe if I can raise enough a new socket. 

 

Again I am very fortunate that I am able to ride now, well once I get over this dam colitis thing, and I'm hopefully able to "Pass it on" as it where and get involved in doing some more important support of others.

Anyhoo here is the link to my Go Fund Me page, please share and thanks for any support.

Kind Regards

Glenn

A bit of fun...

 I had been searching for a fun private plate, for either my VW Bug or my Wee Abarth 124. I tried all sorts of combinations, however couldn't really find anything relevant that would either suit my cars or my personality.

Some plates  go for extortionate prices.

Anyhoo   whilst perusing the interwebs and trying various letter and number combinations I quite liked the fun side of this registration. See if you get it? Answer at end of blog

My dad very kindly offered to go halfies, so we called down to Utopia Plates based in Durham and I bought the registration, complete with some new 3D number plates, stickers to pop them on and I also paid for Utopia Plates to complete the DVLA transfer. It should take around 10 days to complete the transfer.

LEG OFFF

A Few Shots of my Abarth 124 Spider

 A real short blog, with some rather disappointing pictures of my wee Abarth 124 Spider, wearing her new 18" OZ Hyper GT HLT wheels and riding on Yellow Speed Racing Coil Overs.

Washed and polished her this morning.

Some of the shots taken with my very Old K-30 Pentax which I still think has some sort of an aperture block error, and some shots using my Nothing Phone 1.

Thinking of investing in a Google Pixel 9 Pro, as I am not a pro camera dude and prefer easy point and click with decent results.

Oh plus I am useless on this new Apple Mac at editing to Gert decent results. I used to use Snapseed and it was easy.

Anyhoo here you go the piccys...

  

Those unexpected Moments !

 There you are just going through life, nothing appears to be going your way, things appearing to be static, mundane, boring and nothing to really look forward to, then all of a sudden in a heart beat whilst you are lying on your bed feeling sorry for yourself, you get a WhatsApp message. As I reached for my glasses in order to pick up my phone and see who had contacted me, I saw that it was my friend Dragos, with a somewhat cryptic clue... 

  

Love & Hope International Film Festival

"Looks like you are Practicing your Spanish".

Huh!  

This was then followed with two images and a brief explanation that Dragos had posted on Facebook. 

As I read Dragos's messages it became clear that we had been officially selected to take part in the Love & Hope International Film Festival in Barcelona... Wow !

This was for the short documentary Dragos had shot, which portrayed part of my journey from taking ill in 1995 to overcoming some tough times and rediscovering my passion for cycling.

Once the excitement of the news wore off a little I immediately set about stressing. Why you may ask. Well if you follow my blog and stories you will know that of late I have been rather unwell. I have now been off work for going on 4 months, with a horrible disease called ulcerative colitis. I have only just been diagnosed and I am currently on treatment. 

So my stressing started when Dragos asked " Have you got your passport"?

"Omg! Dragos actually would like me to attend the event in person" and spend sometime with him and other members of the team who made the film, as well as all the people who would attend the festival.

 

Love & Hope International Film Festival

I informed Dragos "No I hadn't gotten around to sorting my passport", as we had discussed this months earlier, explaining I had taken unexpectedly ill. That said now that the treatment had kind of improved my symptoms I could look into getting my passport sorted. Dragos sent me a link to a dot Gov website to get my passport done urgently. I had a quick Scooby at the website then got off my bed, went and had a shower and a shave and tidied myself up. I then went immediately up to my local Post Office in Stanley to see if I could get a Passport sorted there quickly.

At the Post Office the staff were amazing, so very helpful. I explained the situation and was informed that if I got the passport done at the Post Office there would be no guarantee that the passport would arrive in time ( It had to arrive before the 17th September). I discussed the info I had read on the government website and the Post Mistress explained there was a Passport office in Durham and that I could make an appointment with it online  to receive an urgent passport.

I asked would it be possible to have my identification photos taken at the Post Office, just I didn't want to risk taking them myself, and them not being approved. Again the staff were ever so helpful and did all the selection and button pressing of the Photo Booth machine. Thank god they were there as there was no way I could have done it myself, I am blind as a bat without my gigs on and after removing them I couldn't read any of the instructions and prompts. There was a little bit of a stressful moment as the photo machine wouldn't accept payment in coins, however it eventually accepted two £5 notes. Job done.

I returned home and began my application which was pretty straight forward. The passport cost just over £207 and I now have an appointment to attend the Passport office at Durham, I should then receive my passport one week later.

Following this I wanted to give my manager at work a ring. Again stress getting the better of me. I mean here I was in my mind planning a trip away, yet I was and have been on the sick for around 4 months. When I spoke to my manager she was very supportive asI explained my situation, letting her know that I would be returning to work before I planned to head off to Spain, asking would it be okay to put some Annual Leave in for the days off. There is no way I would have sneaked off on a quick holiday or get away whilst on the sick.

It's funny how my mam springs to mind whenever I am not feeling well. You see my mam was old school. When I was a child if I was sick and off school  I was not allowed to go out and play. That was the rule and that rule has lived with me right until this day. So now that I am off work, regardless of what aliment I have I only ever go out unless it is absolutely necessary, like for hospital or doctor appointments. If you are too ill to goto work, you are too ill to be socialising or doing anything that involves being out and about rings in my ears in my mothers voice.

After speaking to my manager I felt a lot more relaxed not just about the trip, but also about moving forward in my return to work.

Next I got back in touch with Dragos with a quick message, Dragos then rang me and we had a back and forth conversation. From here things moved really quickly and before I knew it Dragos had arranged dates, booked flights and very kindly paid for them. I have to say I felt guilty about not paying my way. I am not used to such generosity and from day one of meeting Dragos he hasn't asked anything of me other than friendship and the opportunity to promote his work, which I am only to happy to do.

We now had an itinerary and plans for my visit to Spain, this involved Dragos meeting me once the plane landed in Alicante, driving to his villa in Valencia, a few days there, then a 3 hour drive to Barcelona for the film festival and time permitting some mountain bike riding back in Valencia, before flying back home. A lot to fill in in 4 to 5 days.

I am not well travelled, my last and only trip away was when I went to America, way back in 2013. This was an epic 3 week adventure where I had to wear my big boy pants and it really gave me a sense of independence and adventure, and now all these years later I have another opportunity, which I am both most grateful and feel very fortunate for.

Loosing my leg was a huge blow to me, however in hindsight in some bizarre and highly weird way it has been a ludriciously positive turn of events. I can honestly say if I had my own two legs I probably would never have travelled, and upon my life journey I would not have met some of the most amazing, friendly and supportive people around the world, who have gone on to inspire me.

I will make sure to blog of events upon my return, hopefully with some interesting pictures.

I now kind of have a diagnosis!

Following on from some of my previous blogs about having to go into hospital for some investigations, well I now have a kind of diagnosis, which is on the one hand a relief , whilst upon the other it's like, (and please excuse the language),  it's just this is real life, " fucking hell man, how much more do I have to go through".

I have been off work now since May the 5th, it all started probably way before May if I am honest, however I thought I had just picked up a bug, and as things got worse, maybe possibly a Clostridium difficile infection, known as C.diff.

I won't go into the gory details, however diarrhoea, terrible tummy cramps, back pain, confusion, headaches, joint pain and even itchy eyes, along with a sense of being really fatigued and irritable.

Whilst visiting my G.P surgery I was given a weeks course of antibiotics, which didn't work at all and then when I returned I had to give various bodily fluids and samples and it was the poo samples that came back with irregularities.

My first colonoscopy was a fail, put down to poor prep. I swear I tried to drink as much of the vile laxative drink, Omg! it was disgusting, far worse than the first procedure itself, where yes I chose to be somewhat sedated. I mean who wants to be aware of a camera being shoved up your hoop.

As I awaited a second colonoscopy appointment I was becoming increasingly concerned, about my symptoms and as we all do turned to Google., though I do have to say I did NOT visit misinformation sites, sticking more to NHS verified sites.

Obviously the scary scenario I had in my head was that I would require surgery and have to have a colonoscopy and wear a stoma bag.

The first colonoscopy that wasn't successful I was informed that the results looked like I had Colitis. The second colonoscopy which was a little more uncomfortable and painful confirmed I had ulcerative colitis.

Moving ahead an appointment was made at the Inflammatory Bowel Disease Clinic where I saw a really friendly and supportive speciality nurse. This appointment was probably one of the longest one to one appointments I have ever had in my whole time as a patient, and I got to ask lots of questions and garner a lot of information in moving forward. One of the first things the nurse did when she met me was reassure me in kind words, something along the lines of "Glenn we will help you to deal with this and with treatment you will start feeling much better".

As my blog title says "I kind of have a diagnosis". You see although what I have is classed as Inflammatory Bowel Disease, which stems from something going wrong with my auto-immune system and then my body attacking itself, as for the Ulcerative Colitis diagnosis the consultants report was a little ambiguous. During the investigation it appeared I was mainly inflamed in a certain area and not as expected throughout. All I understand is it has made me feel miserable and I don't normally ask the question "why me" when various health issues have occur din the past, however this time around it has really got to me, so I have been internalising with a lot of swearing "WTF!". In my head I have put two and two together and blame all the horrible medications and treatments I have had over the years which have seriously affected my immune system. Anyhoo no good dwelling it is what it is.

As the appointment went on the nurse provided me with a website that the NHS recommend which is crohnsandcolitis.org.uk which is a very useful and informative site and saves me going through what Crohns and Ulcerative Colitis actually are.

I have now been placed on 2 months of steroids and tablets which I believe are for calcium. The steroids are called Prednisolone and the nurse informed me they can come with some side effects and that I must not stop taking them and make sure I finish the complete course.

Upon taking the steroids, within a couple of days they had really helped and this was such a relief. I have experienced some minor side effects, well unless its all in my head and psychosomatic I just cannot sleep, even though I am taking the medication around 7 am each day, and today, day 6 of taking the meds I am experiencing some low mood. This could be of course as I am bored out of my tree, still not feeling 100 % and missing going out on my bikes, especially as i now have my new Bartlett Tendon knee which I haven't even taken out of its protective box. Add the fact I have lost weight due to being ill so my prosthetic leg is not fitting great again.

Anyhoo the main reason for this somewhat personal blog is to not only tell my story, but to also maybe reassure anyone going through this horrible disease that it is good to talk about it and take support from where you can, in helping deal with it.

For me I have learnt I now have this for life and that it can be controlled through medication and that possibly I may have flare ups in the future once this flare up is settled. As with my Non Hodgkin's Lymphoma, it is no good putting my life on hold, everyday is a new one and it's better to live in the moment rather than worrying what is ahead.