Sunday, 31 May 2015

The Story Of Steph Part 2!

       Sometimes, knowing that I was having to contend with things that other people were, was kinda draining. It often made me want to bury my head in the sand, especially when I was a teenager. All these hormones would kick in but 'no one will ever go out with you because you're in a wheelchair.' The thing is I actually believed this, and I guess it became my mantra. An unconcious one but still. That's why it's so important what you tell yourself. I was now in and out of hospital like a yo-yo, having operations left right and centre. Quite literally! I was admitted to Kings College Hospital where I was under Mr Bassey who inserted an intrithenal pump in my stomach to provide my medication straight into my spine. It is a lot easier than taking the drug that I'm on orally as taking a pill orally means that some of it gets lost in transition. I was the guinea pig for this operation because about 4 years later, my brother also had the same operation.

    Now, at the time of this operation I was only 14, so I got transferred to Evelina Children's Hospital soon after my operation. And it was great there. I had been there previously for some tests and I was happy to be going back - if not in such a fit state! The consultant I had at the time was Mr Lin who was the best neurological doctor in the country. I felt very lucky to be under his care and guidance and he has turned up at our hospital appointments of recent years too! While I was recovering I had some great nurses who really helped me get through, and I wrote a lot of lyrics about being happy in your mind and that will help the body to recover. I actually wrote a lyric the night after I had had the operation! This was also the Christmas that I met Sharon Osbourne and Leona Lewis. There is a blog post just on this topic if you are interested: !!



Friday, 29 May 2015

Going To Disability Initative!

It's unusual to go to a place that feels more like home than your own! It really felt like that the day I started Disability Iniative!  It was awesome meeting everybody there before their morning sessions and embarking on my first session there. Everybody just encompassed me into their routine and it honestly felt like I'd been there forever! I was guided to my afternoon session by the lovely Darryl - which included a ride in a lift which I can do independently now.

I made so many lovely friends - including Charli, Sam and of course Darryl that I hope to still be close with in years to come - and it was great to go somewhere where everyone has the same main objective. To learn. I guess it is a little bit like a school, but not as regimented and the care workers are teaching us stuff that help us to enjoy life. And it is set to our pace. Everyone splits up to do different activities, we all come together at the start of the day, lunch and the end of the day. That is when we socalise which is great. Everyone there is so lovely, it's only when you get talking to these great people that you realise how much you have in common with them. It is so awesome for me to finally feel I fit in somewhere after so many years of crossroads!



Wednesday, 20 May 2015

Things Are Not Clear Cut Part 43

Jamie got to the hospital early. Today was the day. He knew it deep in his heart. He had to tell her his true feelings because there's no time better than now. And at least being uncoincious meant that she couldn't interrupt. He did not know what he'd do if she never arose from her coma. He'd be regretful for the rest of his life if she didn't wake up. He had heard somewhere that people in comas could hear things happening around them.

He went straight to her room after picking up a paper which he added to the top of the pile of dusty papers on the window sill. He noticed a blue tumbler on the table next to Ellie. He also heard a quiet song that was playing in the silence of Ellie's room. That made a nice change. He saw the small CD player which was where the music came from. He looked around. Linda wasn't meant to be there today. The scene was deserted. He knew what he had to say wouldn't take long. With a final glance around he took Ellie's hand and paused the music. Now or never.
'I should have done this months ago. Before you came here - before this happened.' He paused and took a deep breath. 'What's that quote you believe so wholeheartedly? 'Take every moment for what it is, you never know what opportunies lurk there?' He toyed with her fingers. 'Well, here goes,' he took another deep breath and closed his eyes.

'You've become someone very important to me. In my life I don't have many people who would have stuck with me if they didn't have to. You've had a clause to get away every day, but you never took it. Thank you for that. But I believe our friendship has run it's course now, I'm sure you could sense there was a problem between us. And I believe that the problem is that just friends won't do. Just friends won't cut it anymore when I want to be so much more.' He stopped abruptly, perhaps sensing her eyes flickering.

*The big reveal! Finally! Hope you liked it! Thank you for reading.



Sunday, 10 May 2015

The Story Of Steph Part 1

I was diagnosed at seven with spastic paraplesia - which was later proved the wrong diagnosis but they knew there was something not quite right with me! Years of physio, hydro and hospital appointments (waiting at St Peters for up to two hours at a time) with an impatient brother followed. Appointments with Orthotists for Afos also became a recurrance. Afo's were rigid splints which I did try to get on with many times throughout childhood but were too rigid. I remember having a pair of 'denim' splints - they were still rigid but they had the design of denim on them. I remember the different splints I had for at night - plastic nearly see-through ones. I had to have my legs in plasters for weeks at a time to stretch the tendons in my calves which once became so painful that my mum had to take me to Heatherwood Hospital in Ascot to have them cut off.

Once my walking was getting worse I tried loads of walkers but couldn't get on with any of them. I was much more content when I started using a wheelchair for longer distances. By secondary school time I was using an electric wheelchair - a purple spectra wheelchair which looks so small now!

Mum and Dad kept everything as 'normal' as possible for me and I owe them so much for that because I never felt like an outsider in anything, during my junior days. I did gymnastics (winning gold medals as I was so bendy - I am double jointed!!) and lots of swimming lessons. I went to brownies and went away with them. I didn't do anything different from the others and I'm so grateful that I was treated the same as everyone else because it gave me a great outlook on life.

I know now that Mum and Dad were dealing with my brother and I, and they had no idea what was wrong with us at the time.



Wednesday, 6 May 2015

Things Are Not Clear Cut Part 42

Things Are Not Clear Cut Part 42
It was a month later and Ellie was still in her coma. Linda had been going up most days to check on her daughter and Jamie had had to work. He filled in for Ellie as much as he could but it is a little tiring going all the way across London to come back again. His workload had slowed down considerably after Ellie's accident and he thanked Max for that.
Today Jamie is going to go to the hospital. He's not sure whether to tell Ellie his secrets of how he feels towards her with her mother there or wait until they are alone, but nevertheless, he is going today. Maybe he should go on a day when Linda isn't there, but it'd be nice to touch base with Linda again.
Jamie got on the bus to take him to the hospital and bought a bunch of daffodils when he got there. He walked calmly into her white hospital room and instantly the room was brightened as he put the daffodils in the vase that Linda had left there. Linda had just nipped out of the room. Jamie reached out and took Ellie's hand, it felt so cold. He willed some blood to fill those arteries and felt ashamed for all he had left unsaid. Nothing happened.
Then the door swung open and Jamie let go of Ellie's hand. It was Linda of course and she was delighted to see him. 'I did wonder when you'd come again!' she enthused. She got up from the chair that was in residence by the other side of the bed and hugged Jamie. 'I just don't know what to do,' she told him briefly before going back to her chair. He saw  many magazine and newspaper piled up on the window ledge. Linda caught him looking. 'Papers since the day she got brought in, and magazines that I know she likes.' The untouched newspapers and magazines were gathering a fine layer of dust. 'She wouldn't like to miss out on what's been going on while she's - ' Linda stopped abruptly to wipe tears from her eyes. 'While she's been away,' she finished. 'It's always the same, anytime she goes on holiday or wherever,' Linda said with a smile. 'This is just like one of those, she just needed a little break from her body for a while,' Linda maintained her smile and Jamie smiled back at her. He knew she needed strength right now and if stories like that were getting her through he was all for it. He checked in his pocket if he had enough to get today's paper. 'Have you got today's?' he asked, knowing she hadn't but just in case she might whip it out of somewhere. 'No I haven't yet, it's normally the thing I do before I leave,' Linda said.
'I'll get this one, and we should talk over dates, when there are some you can't do I might be able to,' Jamie said caringly. With that, he shot out of the door, went to the gift shop where he bought a paper and scooted right back to her room.

*I hope you're liking the story so far! The next part will be up in 2 weeks. Thank you for reading!



Sunday, 3 May 2015

How To: Know It's Not Just You

It's not easy, life. You can get so caught up in a moment, in your head. And it is a great place to be; in your imagination before it becomes dark and demoralises you. The why's end to get messed up in our heads.

These thoughts are self-destructive and not easy to get rid of. You need to convince your mind to stay on the positive side.

See things for what they are but don't look down on them.

Just accept them.

You can't always be thinking how could I make this situation better/easier?

But it is good to have your mind jump to that particular question rather than so many others.

I spent years believing something wasn't happening for me because I didn't deserve it.

But I have learnt that I am worthy of feeling good and it isn't a crime that I should.

A lot of people still have issue with this. They think they're on a pedestal and try to avoid making mistakes but trying not to make mistakes is like trying not to close your eyes when you sneeze.

Mistakes are an occurance to all of us and it is the attention that you give them that make it a big deal or not.

Everybody goes through life, and everybody finds it hard.

At different times and for different reasons, granted but we are all only human and we need to realise that.

Society is not helpful in this way.

We all have flaws and we al make mistakes. Simple as.

Some are bigger than others,