There are no winners

‘Jane, do you mind if I go and sit in the empty bay for five minutes, my head isn’t good’ 

As I sat in the dark and empty room, I massaged my head, my eyes and my temples. It was only 12 o’clock, I still had four hours of work to go.

Or I could tell the staff I must go home now instead

As I stood up to go back to the loud hubbub of the ward, I knew I hadn’t ever felt fatigue come on like this before. I took a deep breath and opened the door that lead to the ward.

The noise was excruciating. Children were running up and down the ward and crashing into walls, each noise was piercing and amplified tenfold and my photosensitivity to the light was unbearable.

I had three patients to look after on my own.

My phone rang. It was my solicitor. I stepped off the ward and took the call. It was bad news. I am going to court next month with only a 60% chance of success. Our meeting tomorrow is cancelled.

Well there goes that hope of settling this without the nightmare of court proceedings

I returned to the ward. My eyes were flickering, my head was in the worse pain I have ever felt. The dizziness was torment and I felt so sick because of it. My balance was so difficult to maintain, imagine trying to balance a banana on the tip of your finger.

I have to hide it. I have to pretend

If I am honest about how I feel to the staff, there are no words to accurately describe the experience.

Words like ‘headache’ and ‘migraine’ will never do it justice.

People will judge and people can change your circumstances unjustly, so I must remain switched on.

Because of my accident, this could be my last chance I have to achieve something meaningful that I love

The staff must think I am such a dick, my communication is terrible. Try having a conversation with someone and only using words with vowels, that’s how much effort is required just to communicate with people when I feel ‘fatigued’.

This is a nightmare that no one around me will ever know about.

I finished the shift and even discharged one of my patients. Everything was up to date and I went home only when I was finished, half an hour after my normal finish time. My next challenge was driving home.

I managed to get home. I was expecting another call from my solicitor, but I cancelled.

I spent hours on my bedroom floor. I clutched at my head, I massaged it, used lavender, drank more water, ate a calorific meal, meditated..I felt so sick and dizzy. I crawled to my bathroom as the dizziness made my stomach turn. I vomited back up all my pizza.

What a waste of money that was, I wasn’t grateful for that

But I am grateful for life, I am grateful my body hasn’t failed me yet. I thought I may end up with a seizure yesterday, but once again I am grateful that my body was able to cope (just about), but the feeling of guilt remains ever present as I continue to put my body through this.

But I am in love with life and everything in it

Meditation combined with these experiences make you appreciate life even more. The beauty of living in the present moment with compassion and empathy is always there for me, regardless of how I feel.

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The sound and beauty of the beach, the sun, or the lovely picture of autumn leaves, or even snow. You most probably think I’m mad, which I know I am.

I am a madman who has known suffering and who knows sadness. But I am also a madman who knows the peace, beauty and joy which can be found at any given moment within us all simply by removing the mind or ‘thinking’ and anchoring your conscious into the present moment which is full of all kinds of indescribable beauty.

I also know the latter three can only be taken away by me, not my circumstances.

 

 

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The last push

These two questions will be answered next month:

Will I qualify as a nurse?

Will we win the case if it goes to court?

The power of attraction has meant that these two major life events occur in the same week, of the same month, of the same year. Only 3 days apart.

I don’t want to talk or socialise. I don’t want to debate or discuss, for the past 5 months I have only wanted to be alone.

I don’t fight what I feel, I just live whatever emotion I am experiencing in its totality.

Only the person who experiences anger in its totality knows true compassion

Why fight or try to work out why you’re feeling a certain way? We’re all human, emotions happen. Embrace it, regardless of the emotion or your opinion of it.

Only the person who experiences sadness in its complete and utter totality can know bliss

Anger, love, hate, happiness, anxiety, depression.. they are all part of the same energy. It just depends on how we translate or channel the energy at the given time as to how we will choose to label it.

I feel like I’ve given a part of me to get this far and to know it could all come crashing down is a sobering thought.

Before I started this I knew I’d have to be content with feeling sad, lonely and scared for a long time.

I took this fight on knowing it would push me beyond my limits.

I’ve changed during this journey, I found my true self. That on its own has made it worthwhile.

Nothing is impossible. Impossible is a word, words have been created by us. But conscious actions can destroy words like ‘impossible’ and prove that they have no existential relevance whatsoever.

I will stop this when I am a qualified nurse or I am told I am no longer eligible to try. Between now and then, I’m happy to go a few more rounds.

The fight of my life

I had a big meeting regarding my court case on Friday:

Your brain injury was the severest type possible. What you’re attempting to do is rare

I replied ‘and not a single soul will ever know that’. She got it. Her daughter had had a TBI too and attempted to be ‘high functioning’.

What you’re doing can bring hope to so many

My level of functioning is rare but it comes at a cost. But If I hadn’t of pushed myself like this I would not be functioning at this level now. Alas, from the start I was told so much was not possible by the ‘experts’.

I was written off from day one

But as I’ve said before, my scars tell a story that you should never take ‘no’ for an answer from someone who proclaims to be an ‘expert’ or otherwise.

Doing this costs me everything

During my darkest times I have fallen off the wagon in spectacular fashion. I’ve been in the darkest places imaginable but I did my best to reverse my circumstances.

I am sick of my heart aching for my daughter every single day. 

But as always I need to put that aside and focus on the tasks at hand.

I’m in the fight of my life right now.

I’m fighting for everything myself and my family have believed in and fought for for so many years. I’m fighting to prove that not only is ‘nothing impossible’, but that regardless of how you’re told ‘things are now’ you can still achieve the ‘improbable’.

I am fighting for what I believe in..

..I am fighting for the minority. I am fighting for those who have to fight for themselves every single day, whether that be fighting against discrimination, difficulty getting the right support they are entitled to and deserve or simply to help break the rule that says being different is a bad thing and you can’t be fulfilled if you don’t ‘fit in’.

I have no plans to ‘change’ anything. But I do know my circumstances can give hope to so many people.

I will prove that fighting for what your heart is telling you, when your mind and all those ‘practical’ people around you are telling you something different, will lead to your happiness.

Fear is something we all have, but it is something that can become our best friend if we change our outlook

I believe that  depression, anxiety, disability (hidden or otherwise), physical pain and suffering and social isolation, after so many years of people all over the world fighting them, instead of being fought, should now be treated as our invisible ‘friends’.

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If you can make peace with all these little fuckers then you can do anything

One day this will all make more sense and I am fighting to make that day become a reality.

This is why I will only stop this journey when I either achieve it or I am no longer here living this life. I’m willing to put myself through all sorts of hell to get there, because it’s not just me I’m doing this for.

 

Think less, feel more.

Today at work, I was swaying standing in the staff toilet. It was only 10am, I still had 6 hours to go.

Switch on

I drank 4 litres of water. I took regular toilet breaks to splash water on my face and use my e-cigarette as the nicotine helps me in the short term.

I noticed last night my left eye was very bloodshot, so I used some BB eye foundation eye cream to make myself look a bit fresher.

I went to the staff room and got some protein bars down me, calorie intake is crucial at this stage.

I left the staff room and put all the effort I could give into saying (as cheerily as I could) ‘hiya! How are you?’ to a member of staff who greeted me en route.

I maintained eye contact, despite my 4th cranial nerve giving me the good news as my eye muscles kicked into action and I forced myself to move my eyeballs upwards to meet her gaze.

Every day I have to pretend.

I have proven I can work as a nurse competently and safely, but it comes at a big cost for me. So now it’s 7:30pm and I’m going to bed. I swapped tomorrow’s shift for Wednesday as I need to get better.

I need to recover this as best I can, otherwise with all the will in the world if you do not listen to your body, you’ll end up feeling fucked for 3 months and barely able to lift your head off your pillow, like I did over christmas.

It hurts, it’s ugly, it’s messy, there’s constant pain and discomfort and at times it’s terrifying. But I know I can get there.

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This is what often happens when my rest days are so busy. The past two days my nan was visiting and I had Reese during the day, but it was a rookie mistake to make to think seeing them instead of resting was a good idea.

Just under 3 months left, I’ll only stop trying when I’m no longer on this earth. a bit dramatic perhaps, bit it’s more than just a job for me.

Sometimes you need to listen to what your heart is telling you even when it’s leading you through hell and back continuously. Listening to your heart is far less boring than listening to your logical thoughts.

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One moment at a time

On Friday I’ll find out if I will be qualifying as a nurse after all these years.

Most people would be excited at the fact they hadn’t had any bad feedback from staff

Except just like a previous placement, I know that this means something very different.

But we have an urgent meeting Friday for your case. Do it and this could be over soon!

…said a solicitor. The key word here is COULD, which is all a certain court case has been these past 6 years.

It’s taken me 3 months to get hold of a written sentence from the NHS bursary people that shows me a breakdown of my costs

I needed this for my housing benefit. The NHS wrote the wrong date on my account, that was the hold up. Well it’s certainly not urgent anymore as I’m nearly completely broke now.

I will receive the housing benefit if I am awarded PIP…

..but the government decided to take PIP away from me for no reason at all recently. It’s been appealed, but the process will take the best part of a year.

The bank have been charging me for an overdraft as they think I have graduated uni

…uh, no, I’m still a student.  Problem is they will only accept a certain type of proof as evidence, literally don’t even know where we are with that one anymore.

Your free car tax has been declined

..because of an admin error. Having a health condition and being unemployed meant I am entitled to free car tax, but they forgot to send my subsidised invoice so I could pay it.

Isolation

This isn’t half of what’s going on in my life, this was just the last week or so. My mum now has a second job sorting out my life for me, everything is just a constant fight day in and day out. 

One thing I do think I am missing out on sometimes…

..is a normal life. I don’t have time for friends or a girlfriend. Nobody really understands what’s going on around me. Anyone that does get close I can’t seem to hold on to, I just can’t give them the time.

I want people to know it’s not that I don’t want to, I’m just always very tired

 

It’s the same with keeping in touch with people by phone. It’s not that I don’t want to, quite the opposite in fact. I’d love to get in touch with people, but I often just forget and only remember when i’m in bed that night. That’s why I enjoyed uni so much, being around nice people for three years was great.

I sacrifice time with Reese too, this hurts.

My only hope is that I am doing this for the right reasons and one day she will see that.

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Breathe. One foot forward. One moment at a time. While there is still this beautiful moment, I’m winning.

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You only lose what you cling to

When July arrives this year I guess i’ll be finding out a great deal in regards to which direction my life will be taking. It’s a culmination of the two biggest aspects of my life meeting at once.

But the court case is not in any way in my hands

Big medical interviews are coming up though. I’m needing to swap shifts to make time for these. Oh yes, my shifts. My final nursing placement, which is something thats big enough to manage on it’s own.

I have to stay focused.

The NHS have already declined me funding if I need to take anymore time off sick and extend my course. That bit of news is particularly peachy for me this week, as I’ve spent this past week suffering in my bed with severe strep-throat and tonsillitis.

Although I’ve lost 4 lbs. And I got some steroids. So fair one 🙂

But I’m running out of time and money. July is the end of the line for me, if they decide to pass me or not. I can’t afford to live in my flat, let alone fund myself for my nurse training. It seems each I get into a momentum whilst working my health gives me the good news.

The support I do get is running thin, 7 years is a long time, but i’ll feel forever grateful for the support and compassion I was extended, it’s a beautiful aspect of life I’ve experienced and am eternally thankful for

My situation is, and continues to be, completely unique and at times, not quite believable.

Another week off work sick

But I can’t do much about that. When July comes, the worse case scenario is that I could ‘lose everything’. By that, you can infer the loss of my flat and independence, financial security for the rest of my life and the one thing I have always loved: my nursing.

But you only lose what you cling to

So I no longer cling. I live in this moment in complete contentment with my solitude. My problems are no greater than anyone else’s.

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Recently I actually let someone get quite close to me for the first time in years. I was still very cautious, but we had a real connection of weirdness. I was disappointed when I received a drunken message one night saying that

‘My friends think your brain injury is just an excuse’

Again, you can’t blame people for feeling like that. I look normal and it’s very hard to see past what’s in front of you, especially if you do not practice meditation. This is not the first time a ‘relationship’ of some kind has broken down as a result of others’ misunderstanding of my condition, and i’m certain it won’t be the last.

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I was however, at the beginning of the week when I was pyrexial and Tachy, having very vivid hallucinations of Albus Dumbledore standing at the bottom of my bed with uncooked potatoes rolling around his feet and my bedroom floor.

I’m used to having my neck above the waterline. I’m used to having the odds stacked heavily against me with only a very minute possibility of coming out the other side.

Through the good and the bad, I just breathe and feel grateful for this moment, because that’s all that exists. I enjoy the moment I’m in and don’t expect anything from the next one. Whilst there is still this moment, I am always winning.

 

Fin.

It’s never ending.

We’re gonna charge you for the overdraft you took out with us 7 years ago

I took this out when I first started my nursing. They think I’m graduated and should be paying it back. They don’t seem to take my explanation as the truth.

You’ll no longer receive a bursary as your be been receiving it for too long

Fair one. Everyone has an expiry date. I’m like a banana that’s starting to go brown through the eyes of the NHS. Bye bye my number one income.

You’ll no longer receive PIP payments from the government

Then again they’ve been rejecting me this for 6 years, even though it’s my second biggest income, so it’s understandable.

You can no longer have a permit for work. I’ll now need to pay £11 a day to park at work.

TBF I didn’t see this one coming.

I can’t talk about my court case on here.

But I will say that there’s shit loads I have to do to keep on top of this, endless medical reports hundreds of pages long, email after email, foreign reports of the accident, the (alleged) lies being told by foreign professionals under duress, it’s endless. And it’s not easy.

But I’m learning all I can about oncology

It all comes down to this. Can I handle it all and pass my final nursing placement in the summer? We shall see soon enough.

I knew this was all coming

All of this because I want to be a nurse.

Conflict is constant sometimes life hurts

Mum is taking Reese to see Paddington today at the cinema. Reese asked if daddy was going, and I’m desperate to! But I’m fatigued and need to sort out some of the above.

It’s been a journey.

The bruised pictures that I kept for the police from being attacked

The people I’ve lost along the way

The misunderstandings and lies told to my uni about my competence as a nurse

The divorce papers in my cupboard

The pictures of my daughter who I hardly see due to my health

The empty packets of tablets that litter my kitchen

The endless discrimination I face from people every day

The lack of understanding from doctors and people who’s help I need

The emails, the lies, the paperwork, the application forms, the solicitors letters, the delightful prognosis, the financial pressures, constant headaches, the medical interviews, the pending results for further medical conditions, the fact I’m on my final nursing placement, all topped with the intimate and misunderstood relationship I share with my head.

But what’s going on around me isnt important.

What’s going on around us all is just a dream, that’s all it is. What’s inside me and real Is this:

Fin.