Five places I want to visit 

  1. Hawaii
  2. Florida
  3. Demi Lovato’s dressing room
  4. Zac Efron’s arms
  5. Thailand

A person who never travels never turns the page of a book.

WIP: I’m thinking of writing my autobiography on putting it on Wattpad. 

Title ideas being: 

The ride of my life

Chick to crip 

Ramping it up.

Comment your favourites!!

ME Tips – A survivors Guide

Tips are my own and may not work for everyone – consult your doctor before making any major changes to diet or medications.

  • Organise your medication for the week – I’m ashamed to say my mother does this for me. It’ll be easier especially during brain fog where you don’t have to think of what tablet to take.
  • Say there’s a TV show you want to watch at 9pm but it’s too late for you? Well take an hour and half nap in the early afternoon because you’ll be refreshed but by the time 9pm rolls around you’ll be tired enough to sleep through the night later on.
  • Don’t beat yourself up about flare days or having to cancel on friends – they should love you enough to understand, you already feel guilty and you don’t need added pressure on top.
  • Make the most of good days even if it’s just a walk outside
  • If you’re like me and whilst your body hurts but your mind is racing, let audiobooks/colouring become your best friend or treat yourself to s Netflix subscription.
  • Natural sunlight is the best medication – typically the more vitamin D I have the more improved my ME is.
  • Understand what’s a flare and what’s not – a diary is helpful thing to have especially when visiting the doctors.
  • Flick the bird when someone says ‘Your illness isn’t real.’ You live it, they don’t.
  • Keep hydrated
  • Regular toilet visits help especially with all the meds.
  • Anti depressants help – an invisible illness is hard to deal with
  • Don’t get your hopes up about trials and new research.
  • Connect with the chronic illness community on social media – you are not alone!

Book Review: A step closer to Falling

This novel is told from the viewpoint of Emily about her and Scott’s community service, helping a group of adults with learning difficulties in a relationship class.

The reason for this? They didn’t come to Belinda’s rescue.

Belinda, a teen at Emily and Scott’s school also has learning difficulties and because of an infatuation she heads to the school football game where the incident happens.

Through Belinda we see the contributions leading up to this: an obsession with Pride and Prejudice and being too easily trusting. Tired of being over ruled by her protective Nan and Mother. Just because the incident happened doesn’t mean her life should stop.

As Emily and Scott complete their course, things begin to spark between them. Can admitting what happened to Belinda and the courage they see in class admit what they’ve been feeling?

Is tough guy Scott all he seems?

Will Belinda find happiness?

Will Emily see beyond the surface?

My Verdict: I expected nothing less from McGovern n, the subject of disability is handled delicately as well as relationships and sexual harassment. Beautifully written. With a beautiful message of equality without coming across as patronising

Genre: Young Adult/Relationships

Rating: 5/5

Work Experience at ITV Wales Studio

So, if most of you have been following my facebook/instagram/twitter you’ll know that this week I completed work experience for two days with ITV Wales, focusing on journalism and broadcasting.

 

Day one: Wow I was so not ready to wake up at six am, never mind makeup and hair before my grandparents picked me up at eight am! When I got there (10 minutes late due to traffic) I was in awe of this amazing building, it was pretty surreal since I’d never been in a TV studio before (I loved their huge glass window with Ant, Dec, and Michael Buble. Don’t even get me started on the This Morning cushions!)

Taking a deep breath I was greeted by my lovely boss Sarah. She introduced me to the team in the newsroom which can only be described as organised chaos with everyone running around and the phone going every two minutes. I was put to work straight away by finding some stories. Then I was introduced to Clair, she runs the webpage and she showed me how to upload and article. I was then taken into the actual studio, it was surreal to see the green screen for the weather, the robotic cameras and the famous news desk.

Next, it was the planning meeting where they plan the evening programme and get a head start on tomorrow’s edition. I can’t believe I had the gall to speak up in a room full of journalists and suggest a story! I thought I would be the lackey but oh no! They accepted my ideas with great enthusiasm. I also learned a whole lot of media lingo, by lunchtime my head was spinning! I sat with a lovely group of people; Molly, Saif and Zarah who were apprentices there.

After lunch and Red bull, it was time to watch the lunchtime broadcast live in the studio. The presenter, Andrew was lovely and answered all my questions was very patient with me. I also had a head set so I could hear the director and they time everything to the last second.

It was back to story hunting and I was tracking people down on social media for statements and reactions for stories. One of which really impressed Sarah, It was about a baby who’d had a stroke and his mother set up a charity called HemiChat where other parents could connect and receive support. It was great as we were running a neonatal piece the next day.

Lastly, it was time to watch them tape certain segments of the evening news and then watch it go out live on air. I can’t believe Andrea Byrne was giving me tips!!

Shattered, at quarter to seven I headed home filled with elation that I’d been instrumental in the daily news going out. I felt at last a sense of pride that I’d worked hard and loved every second of it. I’d found my path in life.

Day Two: It was a bit quieter today as we only had four main stories to cover and needed fillers. It was surreal being in the morning briefing as their were ten journalists in the room and several others on Skype. I put forward my case of covering a story about a woman with a chronic illness and gratefully accepted my input and personal experiences with media coverage on the subject, as well as making sure that the HemiChat charity and story wasn’t forgotten.

Then I was back on story hunting and taking messages on the phone and then it was time for the planning meeting which was much like the day before.

It’s a very accessible building but trust me to get locked in the toilet with no phone signal. Luckily my plea for help was heard by a gent who rescued me with a two pence piece… I don’t think I’ve ever blushed with embarrassment that much ever.

Lunchtime and it was time for another redbull. Then uh oh! My back started to spasm and I ended up having to take Cocos but, I had to push through. Later on I was shown into the editing suite and was told how to edit a programme.

After that, I was researching food festivals for an upcoming programme and happily skipped off home a six pm. Another exciting day!

Damn my chronic fatigue! I was supposed to be there three days but had to stay home due to a raging migraine and tiredness. I still worked from home though!

 

Sadly my time was up but, I’d definitely found what I was meant to do. I’ve now applied for a smaller company with an apprenticeship taking on their social media accounts as well as journalism.

Wish me luck

Rachel x

How I injured my back

Okay, I’ve cheated and taken this from my old blog Wheelzandheelz (don’t judge me. Sometimes it’s tiresome to type the same story thrice over.) It was December 14th (I remember because it was my nan’s birthday) and my usual bus driver was off sick.  So, it was up to the escort to strap me and the other wheelchair user in but, she didn’t know how to strap the back of the wheelchairs, including seatbelts and told the driver ‘it’s okay as long as we drive slowly’.

We pulled up at school and we were late because he didn’t know the route. So she unstrapped me and I switched my phone off put my headphones round my neck (as I always do) and I clearly heard the escort say ‘come back’  and I heard the ramp noise and out the corner of my eye I saw the ramp there.Except it wasn’t, the next thing I remember I’m lying on my back in my crying. The escort told me to shut up at one point. Another taxi driver rushed to help me up. My TA saw and thought someone was playing a joke but as soon as I saw her I burst into tears. After some shortbread and hot chocolate. They noticed I had I curve in my back and I experienced some back pain. My mum drove to And E fast and I felt like the bloody Stig.

They couldn’t find anything wrong only a slight curve and sent me home with some codiene. I had this pains and deteriorated so quickly it robbed me of four years and only now I’m I getting in sparkle back.  I even had a Doctor who thought I diagnosed myself with cerebral palsy and bought my own wheelchair and said to my mother if there was a magic wand don’t you think your daughter would’ve had it by now?  At that point I changed consultants.  My chair had a fracture so I had to wait for a new one which took ages. The doctor saw that I had prolapsed disc  said it was only minor and didn’t require surgery. The pain deterioration was unbearable. I then had a  to go into hospital as my nerves were pressing on my bladder and I couldn’t pee, leaving me with a permanent catheter bag. They thought a few injections into my back and I’d be fine.

Except I wasn’t. I was on more drugs than the lot in train spotter and I it didn’t do anything for my pain. My mum took nearly 2 years out of to care for me and it was hard every day and depression was just like a dark cloud.

They thought they could relieve my nerves by Botox but that only made it worse, then I saw my new consultant in Swansea she saw my MRI and finally gave me the answer I was looking for, she took out the two prolapsed disc’s. Before that, they tried a baclofen pump and a morphine pump at the back of Baclofene pump only made me violent and suicidal but the morphine pump was like heaven.  But at what point do you say you can’t have any more morphine?  So she agreed to surgery and it was the best day of my life it was like I’ve been given a part two. ( I will do a more detailed post on surgery day at a later date ) Okay so today I still have sciatic pain and pelvic pain which they don’t know the cause of it but, I take that any day over back pain so I could live my lifeAfter the accident  we try to sue the bus company but they believed the wheelchair user at fault which is unbelievable because I never drive with headphones on.  This post can only give you an inkling of what I went through but the main thing for me from getting back to that 15-year-old girl that I was before this accident happened.

The Pros and Cons of having Cerebral Palsy

Pros

  1. Skipping lines
  2. Concessions
  3. Great parking spaces
  4. Exclusive toilets that have better hygiene
  5. Great painkillers
  6. Learn tons of medical tips
  7. Catheters
  • Cons
    1. People taking up blue badge spaces
      Catheter blockages
      Pain
      Physio therapy
      Startle reflex
      Wheelchair breakdowns
      Bullying/ patronising comments

    Do you have any personal pros and cons of life with Cerebral Palsy? Let me know in the comments!!

    CBD Oil: My new best friend

    Okay, this is going to be like ripping off a bandaid.. I take cannabis oil. It is legal and is sold as a food supplement but it is a great muscle relaxer. I’m not ashamed, when you have my levels of pain you’d want anything to stop it.

    There’s no high with it.

    It’s the best thing ever seeing as my painkillers make me depressed and ‘dark’ plus, back up my bowels longer than the M 25 on a Friday rush hour.

    It’s literally magic in a bottle. I take five to seven drops as and when and my spasms reduce dramatically.

    TO ALL CEREBRAL PALSY FIGHTERS,

    SUFFER NO MORE.