The real hell

When you’re driving along the motorway on the way to work in the dark at 70mph at 6:30 in the morning and you suddenly feel razor blades start to slice the inside of your cranium and a 20 stone sumo wrestler is positioning himself on top your head, you know you’re probably in a spot of bother.

Frontal and parietal lobe bleeds and Subarachnoid haemorrhages are a daisy.

That was three days ago. Since then, I am not embellishing when I say I’ve spent 95% of my time in bed.

Fair enough, Diffuse Axonal Injury involves the tearing and destruction of the nerve cells in your brain, which does sound rather serious

The fact they’re the only cells in the body that do not regenerate after severe damage is just typical!

What I’m experiencing right now is neuro-exhaustion as a result of these wonderful experiences which pretty much comes from simply too much output not enough input. I cant help but see this as the perfect excuse to order a dominoes.

Winter survival deal. Boom.

It feels like you don’t even have enough energy to stand up. Your limbs feel like jelly, you have a headache 24/7 and it feels like someone has put glue around the back of your eyeballs!

The sickness is the worst. Thats from the dizziness, which is pretty constant throughout the day but gets worse after about 5pm

The energy it takes just to talk or try to hold a conversation is tantamount to exhaustion in itself. And yet, nobody knows what it feels like, especially if you look outwardly well.

Ive had to take more time off work. This really wont bode well as I’m still in my probationary period

And yet I cant stop thinking to myself how lucky I am.

Because all this would be a lot harder in a wheelchair

I have a job I love (for now at least) I have a family. People at work offer me help and try to support me the best they can. I can walk, talk and wash myself.

During my coma which lasted 2 weeks, I was totally conscious

So I know what it feels like to be in a vegetative state where you cant do anything other than feel acute pain, and listen to conversations going on around you being spoken by people who think their words are being spoken in private.

No matter what happened to me yesterday, everyday I wake up I feel like Ive been given another chance at life.

All I want to do is grab it with both hands. Even if I’m stuck in bed feeling exhausted and helpless, ill focus my energy totally to doing even the simplest of things; eating, drinking, resting. This is how I’ve learned to love spending time on my own.

No matter what is going on in your life, if you’re still able to put your feelings of despair, sadness, worry, anxiety or anger aside and focus on everyday things like this with complete dedication and gratitude your life will start to become magical. You will start to flourish and you’ll find happiness when realising that you always had it.

This is the reason I had to do the nursing

Because I love it. I love helping families through hard times. I like that when I am being myself completely this can help other people. I’m happy to be the clumsy clown because it makes people laugh and I don’t care about much else.

But Rome wasn’t built in a day. I learned to fully merge myself in the daily tasks of eating, sleeping, resting, cooking etc. It was only after I learned to do this that the magic started to happen and the impossible became the improbable.

I remember thinking…

as I was tied down to the stretcher inside the leer jet that made its 17 hour journey up from Mexico to Canada, to Greenland and then to the UK…

If I can survived this I’m making myself a promise to never forget

The smell of the ventilator tubes, the noise of it breathing for me..I’ll never forget that

Even the moment I experienced death before being sucked back into existence through being resuscitated and finally intubated

Every day I am thankful I’m not in those circumstances.

Now I want to laugh like there’s no tomorrow and I don’t take much in life seriously….

Because at any moment you could find yourself in the fiery pits of hell, yet I cant help but think the real hell would be not to appreciate the little things you have in life everyday.

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Catastrophising

Catastrophising feels like you’re living in your worst nightmare that you can’t really explain with words.

You could use the word ‘anxiety’ to describe it

But I’ve felt anxiety Before and this feels much worse. My consultant first told me about ‘catatrophising’ 7 years ago after the accident.

It’s like having a panic attack

It’s horrible. Your heart races and you feel an impending sense of doom, or ‘catastrophe’ and it loomes larger until the wave of panic eventually subsides.

I don’t know what to do

I thought once I became a qualified nurse it might get better, but I’ve had some challenging days at work lately and it seems to be happening more.

This blog is about transparency

It’s fair to say that for the most part I feel I am a calm person, not much gets me excited and I take life with a pinch of salt. But sometimes it appears my new brain doesn’t seem to like me being so ‘cool’.

This isn’t ‘me’, it’s my head which has taken a bit of a battering over the years

Sometimes it doesn’t matter what you’re physically capable of. Maybe you can pull off the miracle of achieving something numerous professionals told you you couldn’t ever achieve.

Then again Maybe they said it for a reason

Perhaps you can fool yourself into believing you can achieve things but you can’t undamage your brain. No amount of willpower can achieve that.

I don’t know the answer,

I’m just trying to work through this the only way I know how: through honesty and meditation. No one has the manual to life let alone brain injury life.

The worse part is that no one can ever really understand what you’re talking about. I don’t understand it at the best of times what chance do other people have?

Whether it’s anxiety; depression, social anxiety, epilepsy, crohns, autism, heart issues, kidney issues, brain issues, liver issues or whatever issues: we are all human and our health can throw up all sorts of issues that we all share similarly.

We label some of these shared issues as ‘depression’ or ‘anxiety’, to name a few

That’s not to say we don’t feel lonely when we experience them. But maybe talking about it is the first step?

Or perhaps I’m just trying to justify why I’m rambling right now. One thing I do know is that I’m not alone in feeling like this. I’ve learned through people reaching out to me after reading my blogs that In some way shape or form, there are people out there who may have experienced something similar to me, if not the same.

But I believe writing and being open about what life is like after a brain injury is important, not just for me but for everyone else too, whether they have had a brain injury or not.

Have I pissed you off this week? No? Give it time I have a knack

Do you ever have one of those days/weeks/months where no matter what you do things don’t seem to go in your favour?

My week seems to be getting peachier by the hour

No matter what I do at the moment, things seem to just be going wrong! Then they go from bad to worse Uber quickly.

Trying to articulate yourself to people who have the wrong end of the stick is tough at the best of times.

Throw in word finding difficulties and a million other invisible neuro-Daisy’s and you have quite the recipe For disaster.

This blog is about nothing specific.

It’s about me just feeling a bit lost in the world, something which is very common for me and many others out there.

Everyone loves an honest person until they tell the truth

So here’s the truth:

Through experience and many challenges over the years, I know I am able to be a good nurse. The question I’m asking myself now is do I want to be a nurse?

Like many things after my accident, the nursing feels a bit like a jigsaw piece that doesn’t quite fit anymore.

Time will tell.

I went for a coffee with my sister today. We were chatting about the responsibility of having a job, how it’s tiring and difficult at times. Just the usual coffee catch up nonsense.

Suddenly the man who was sat next to us who had been listening into the conversation Passionately proclaimed:

‘You should be grateful you have a job! I have autism and I am always discriminated against because I have a hidden condition’.

Only an hour before I told my sister that I have a unique talent for pissing people off at the moment without even trying

Halfway through his speech I looked at my sister and winked. ‘Told you” and smiled in good humour.

My sister asked if I was tempted to mention the brain injury to the man

I said no, because my life isn’t anymore important than anyone else’s. The man had obviously felt passionate about what he heard so I listened to him and showed him the respect he deserved.

I related to everything he said. It wasn’t important that he knew that. I’m not looking for brownie points

Just because he didn’t know my own circumstances, that doesn’t mean what he was saying was not important to him.

I’d said that It must be frustrating looking fine on the outside and struggling on the inside

I had a nice chat with him and afterwards I shook his hand, telling him I had respect towards him for speaking his mind and to keep hold of that quality.

The point is that it is true, you never know what the person sitting next to you is going through.

Would I change my conversation with my sister because of the man with autism? Of course not. It was a councious (never been able to spell this damn word) discussion with context.

There was no way he could’ve known what I was talking about and that I had suffered a severe brain injury which had left me with a deluge of invisible and misunderstood symptoms, some similar to his

But If a lady who was paraplegic was sat next to us, she would have likely chastised the man with autism, telling him that he should be grateful he can walk.

If there was a blind man, he would’ve told all of us to be grateful for being able to see!

If there was a deaf man he probably wouldn’t have said much because he couldn’t hear us, but you get the point.

At the end of the day, everyone has their own shit to deal with.

How can I have anger towards anyone for their decisions when taking this into account? life can be a bitch to all of us, you never know what someone is going through.

Anyway. You’re not here to make other people understand your challenges.

I’ve lived totally enough to know that life is too short to show nothing less than the utmost respect, compassion and understanding to everyone I meet, regardless of how they might make me feel.

And making them laugh along the way is a bonus. Especially if they can laugh after you pissed them off without meaning to!

Giving a ****

So I was inspired to jot down some some nonsense tonight because a distant friend of mine got in touch recently to tell me that a family member had suffered a bleed to the brain.

This took me back

My journey as a TBI survivor taught me a lot of things about people. It gave me the (seemingly at first) curse of seeing people for what they really are and I felt sad for a long time.

Suffering a brain injury is like nothing you can imagine

But it also taught me about the real reason I get out of bed every day.

Which is not Not for the nursing

.. that would be obsessive

Not for Reese

Although she does play a big part in why I do certain things in my life.

We are all humans

And my time in hospital and recovery at home in the years to come showed me that having a poor memory; shifting mood, poor concentration and often feeling tired over ‘small’ activities are not important in the grand scheme of things.

But it takes time to arrive to this conclusion

Things do get better. Everyone is different but we are all human beings for a reason, we have it in our genetic makeup to adapt and overcome. Millions of years of evolution can attest to that.

The only thing that is constant in life is change

Nothing stays the same. Whatever you’re going through in life you need to remember that things WILL get better. They WILL change. That goes for the good and the bad .

So that’s why I get out of bed. It’s because I know that whatever I’m going through will change soon. And l’ve learned not to fear the inevitable change now.

I live totally

I’m a clown. I embrace my clumsy and quite frankly ‘numpty’ demeanour which in all honesty makes me wonder how and why anyone would ever want to ale me seriously. I’m mad and I don’t care what people think about that or me.

Next time you’re feeling anxious, depressed, worried, sad, or fearing a type of change in your life try telling this joke to the person nearest to you:

Why don’t owls date when it’s raining?

Because it’s Toowet Towoo!

No one likes this joke except me. The fact people often don’t laugh makes me laugh.

Living through the harsh realities of life taught me what’s worth caring about and what’s not. Life is a lot simpler when you don’t give a **** .

As I closed my front door behind me, I had one last glimpse at the to do list on my phone.

Haircut

Ice skating with Reese

Food Shopping

Petrol

This small list may seem innocuous to most brain-injury free people out there but this for me is a very hectic day, especially between shifts, at a job the statistics say I shouldn’t be doing.

Job 1

As I entered the barber shop..

It was packed. So an hour and a half later I left and drove me and dad to Bournemouth for the ice skating.

Reese stayed over my mums last night. I saw her for a few hours after work yesterday and had to go home shortly after. I was exhausted after my shift

Job 2

We arrived in B-town. My head felt so heavy already as I kept my gaze lowered to the floor as we walked down the long hill from the car park.

I’m working tomorrow. It’s Xmas day on Tuesday, and I’m working Wednesday and Thursday.

After 45 minutes of ice skating with Reese, I was left feeling drained.

My knees were wobbly from the fatigue and the dizziness had taken over.

I went to get my car so I could do the shopping before the shop closed at 4 (With Reese)

Job 3

In Tesco, it was pandemonium. People were angrily bumping into me with their trollies as I tried to navigate my way down the aisles.

My spatial awareness deficit means I often walk into people and objects

My head was becoming increasingly heavy and painful. At this point I was absolutely fucked.

When you’re in this state, all ideas of budgeting when your shopping become irrelevant. I picked up the closest things to me off the shelves without checking the prices.

Any price comparison ideologies went out the window. I needed to save my brain power.

We bumped past people with me doing my usual talking to myself to explain what I needed to do next.

Reese is used to me doing that

Job 4

All the pumps At the petrol station had ‘out of order’ boldly printed next to them on bright yellow signs. I wasted precious Neuron energy scanning the pumps to find one that was in order.

Job 5

We drive home and my mum collected Reese to take her to her house. Reese is sleeping over there again.

I’ve been in bed for the last hour trying To recover so I can see Reese for a bit.

Christmas is another time for me where I constantly feel as though I’m missing out on seeing my daughter.

But it’s ok. I look fine so I can’t be that bad

In the world most people live in, this behaviour is seen as moody or it’s just simply misunderstood. Try to remember not everything is at it seems for other people.

Writing makes me feel better when I feel down. It’s cathartic and therapeutic which does wonders for my head. It’s a release from the constant inertia of not being able to express to others, either when asked how I am or I have to phone in sick at work (again), or when someone angrily spats comments at me when I forget things, or bump into them, or when the government want proof that I have a disability, because it’s my way of shouting:

‘Under this Versade of looking like I’m ok I’m feeling so alone and fucking struggling and I don’t know how to tell you!’

Keep on keeping on

I don’t have a problem being honest about how I feel and I’ll be the first to admit to you that since I’ve qualified as a nurse I feel like I’ve bitten off more than I can chew.

If a person has had a serious head injury, their GCS will be less than 8

Mine was 5. Joy.

A severe head injury is when someone remains in Post-traumatic amnesia (PTA) for 6 hours or more

PTA is like having dementia. It’s horrifying and gives me nightmares to this day. I was in PTA for over a month.

Speech difficulties. Finding words. Fatigue. Headaches. Memory. Emotional impairment. Constant anxiety.

In the past when people have got wind of my symptoms, they’ve judged me and labelled me instantly. They put me in a box and swallowed the key.

I really can’t blame people for judging me either. Sometimes I really do sound like an idiot. An idiot on drugs.

Mum, dad and my sister took Reese to see the Christmas lights in Bournemouth last night. I really wanted to go but I was too tired.

I’ve seen Reese for 4 hours today. She’s just been taken back to her mum because my fatigue is playing up.

I won’t see her until next Sunday now, And I don’t mean to harp on about anything but I’m sad and a bit angry about that.

I always miss her

I’ve never even had her overnight on my own because of my night terrors. She’s nearly 6!

I’m constantly watching her face drop into disappointment when I tell her that I have to go now because ‘daddy needs to rest’.

After all these years that still remains a tricky one

On the rare occasion I do get invited out to social events, I usually have to say no. I’m not being negative it’s just frustrating sometimes when I really do WANT to socialise!

People often judge me as being boring or unsociable which is (albeit understandably) just not true

At work I literally feel like a bumbling clown hiding this secret that no one has any idea about. Like an undercover agent or something.

Eat your heart out James Bond

On work training days, I often clam up in front of the people who assess me making myself look as incompetent as the day is long.

Sometimes it just feels like my thoughts are wading through a thick swamp!

I know what I need to do, but my brain just takes such a long time to do it. I watch people’s faces as their already-made-up minds watch me make a complete nob out of myself. But I really don’t care about others’ opinions of me.

You’ve got to embrace what you are

I’m not ashamed of who I am anymore. Perhaps the nursing is the last bit of the ‘old Mikey’ that I’m clinging on to.

Either way I refuse to hide what I am now by trying to pretend I’m something else. What good will that do?

I did that for years when I was married. No thanks!

But Make no mistake, you won’t find a more grateful person than me. I’m so lucky for everything and everyone around me.

Although I might not get to see my daughter as nearly as much as I’d like, the very mention of her name is enough to keep me going.

I look forward to the day I can look after her myself for more than 4 hours

And that day will come. After all, all this would be a lot more difficult from a wheelchair. Or a coffin.

And sure, my days are tiring and filled with constant challenges that feel way out of my league

But when you have a severe brain injury life itself is out of your league. So I’ll continue to put one foot in front of the other and just keep on keeping on.

So here I am, sat here with a cup of tea and 8 days until I officially graduate.

I keep telling myself that whatever happens from this point onwards doesn’t matter.

Some of the ‘usual’ readers of this blog will know what kept me motivated.

Hidden illnesses

..whether that be head injuries, chronic fatigue, mental health issues to whatever.

Or for just being different …

…or being told you can’t do something, for whatever reason. Or perhaps just getting setback after setback and your goal is getting further and further away.

Learn to embrace aloneness

When I was being faced with an assault charge some time ago, I locked myself away for a whole month before my hearing.

I didn’t see friends or family for the majority of this time. Other than my family, nobody at my uni believed that I was innocent.

And a miracle happened

During that month I saw the truth which can be found hidden in the sound of silence which is inside every one of us.

Just being alone made me see the truth and that gave me the courage do tackle any obstacle coming my way.

In some Zen monasteries, when people arrive to start their journey of enlightenment, the monks will insist that they stay in a room on their own for 3 weeks before any ‘training’ can begin.

I was lonely for years. The ‘old mikey’ was so popular and outgoing that the new Mikey, in contrast, was a let down. And for a long time I hated him.

Society teaches us to ‘keep busy’ during stressful times

I was suckered into this for years. But as time was passing by and more and more friends were slowly dropping out my life because the ‘new Mikey’ wasn’t as fun or outgoing as the old one, I started to question this little theory.

After my head injury, aside from one, all my friends disappeared. I sat in hospital wondering why everyone’s phone was Suddenly turned off.

And All those who had come to my stag do only a few months before? They did a Harry Houdini

After I split with my wife, where were all the friends I had made while I was with her?

First they had gossiped, then they disappeared

For years I punished myself with alcohol (And sometimes a lot worse)

Drugs. Shock horror. Yes, this blog just got real

But when you’ve been at a point where you don’t care if you live or die you realise it’s important to be honest, maybe to throw other people a lifeline.

The answers we need are are in front of us. Not inside a bottle. Not in someone else’s head.

Learning to ‘go it alone’ and be comfortable with this was the thing that saved me.

From substances, alcohol, spiralling out of control and ultimately giving up on life

Being alone is the last thing I wanted. But circumstances meant that I learned to embrace it. Putting yourself first is something society tells us is bad. But unless you do you will have no hope of finding any sort of calm or happiness.

You’d be surprised by what could save you if you gave it a chance.