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.

 

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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.

Shaun

It’s 10pm. I’m fatigued beyond words and freezing. My car never warms itself up enough. I’m driving though Westbourne, and as always, I feel a pang of guilt as I drive pass a homeless man lying on the floor with his duvet.

You all know the ending to this one

Remembering I had a spare fiver in my wallet, I pull over. I get out and give it to him, he’s grateful as always and says goodbye. I walk back towards my car and I’m greeted by two lads, one of who’m is in the state of inebriation I always aspire to reach when I partake in a G+T session.

‘Hello mate! Give me a kiss eh come here I want a cuddle!’ 

He staggers towards me. I laugh inside. I won’t lie, as well as laughing I got a bit excited too, he decided to get balchy. I just watched him, ready to defend myself if necessary. Not  exactly a new situation. However his mate, who was decidedly less drunk than my new friend, was there to talk some sense into him.

‘Leave it mate he’s twice you size he’ll knock you out!’ 

I told him he should take his bravery jacket off and listen to his friend. I always remember something someone said to me:

If you’re ever in public and you find trouble, always put your hands up to show you mean no harm. That way the police can say you acted in self defense

Remembering this, I put my hands up, but luckily his mate dragged him away, telling him to shut up.

Then I realised. My homeless mate, Shaun, was in their path of the direction they were walking. My new drunk mate was still shouting at me as I got into my car, his mate hushing him. So I waited with my camera ready (and superhero cape) to jump out,  record, and help if they decided to give Shaun a hard time, but they didn’t.

Ok. Home time.

Then I had a thought. I turned my car around and drove back to Shaun. I rolled my window down and said:

‘Mate. How much do you need to get a hostel for the night?’

He told me £12. So I pulled up at the bank (where my two new friends were also standing) and fetched the money. So I paid it to him and was relieved when he started gathering up his belongings, telling me:

‘I’m not staying here unless I have to! Time for a shower, a hot dinner and a bed’

Am I skint? Yep. Does it worry me? Nope.

For the regular readers of this blog, you’ll know my thoughts towards people who do not have a home to live in, so I won’t waste my breathe. Shaun is one of many friends who sleep rough, so I often hear all sorts of stories from these guys.

Money has never meant a great deal to me anyway tbh.

But I’m safe. I’m home and don’t have to worry about pissheads starting trouble with me. I was chatting to Shaun as I was getting his money, and he says he’s used to getting a beating and leaving it at that, it’s commonplace. I suppose I’m just writing this to remind anyone reading it to think of the small things you have in your life. They make all the difference.

Throwing in the towel

I’ve chosen to not see Reese for a while. The pain in my head is still raging after 4 months with little break.

No television, minimise cognitive demand.

7 years of fighting and I’m running out of funding.

Financial case which determines my ability to live without working is looming.

Government have rejected PIP payments. My capital I’ve been using to live off has almost gone.

I have a potential undiagnosed health condition which is the result of my injury and not helped by my over exertion over the years.

Not epilepsy or dementia…

..although they could be imminent the way I’ve been pushing myself for so long and making my symptoms worse.

I could end this pain and suffering now

If I throw in the towel now my life would be liveable at least and all these facets would be manageable. Perhaps I could maintain human relationships again too.

Throw in the towel and the pain in your head will go away

But it’s not just about becoming a nurse now.

Children learn most from what you are, not what you teach

I have an opportunity to stand on a platform to be who I am and help children and their families.

That’s my ‘Wembley World Cup final’.

It’s also a chance to achieve the impossible.

I know I could end it all if I throw in that towel I mentioned earlier.

But all the pain is worth it to me. And besides, I burnt the towel fucking years ago anyway.