30 things before 30 bucket list

    1. Write and publish my second book
    1. Go to Italy
    2. See Anastasia the Broadway show
    3. Pass my university degree with a first
    4. Learn to cook basic food.
    5. Get a tattoo
    6. Sing on stage again
    7. Buy a Pomeranian
    8. Meet John Travolta
    9. Break my virginity
    10. Design my own wheelchair
    11. Be on the Forbes list of successful women
    12. Write my autobiography
    13. Create a charity that supports people with ME
    14. Meet wheelchairrupunzel and wheelchairbarbie
    15. Go to a Gym once
    16. Visit Amsterdam
    17. Visit Hawaii
    18. Get married
    19. Write a third book
    20. Go back to ballroom dancing
    21. Design stylish disability equipment
    22. Found a school where any pupil with any condition can come and learn and not be classed as the special needs pupil.
    23. Go to the school of mermaids
    24. Start a podcast
    25. Buy my mum a VW camper van
    26. Buy my dad shares in F1
    27. Write for a magazine
    28. Try to walk again
    29. Go to India

    A dream is a wish your heart makes – Cinderella

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    Health update/getting organised

    So as most of you know yesterday afternoon I went to go and see my consultant about the pain in my back and my hips.

    My mum is always being you don’t need to take a handbag with you I’ve got everything we need well somebody was happy when I had an array of snacks for her to choose from while we are waiting! Not to mention my kindle. It was like, I was the mother and she was the child!

    I felt like I overtook because when we go to receptionist desks and they asked my address they immediately look to my mum instead of me and she uses recites it, not this time.

    So me what I should and to see the consultant and basically what she said was that he was happy that my hips were healthy for somebody in their 20s with cerebral palsy who sits down all the time, my mum was worried I need a operation thank goodness that is not happening. and from his point of view he was happy that there was no information of my arthritis in my facet joints…

    I explained to him the pain that I was getting was quite severe and that I can only bathe once a week and I will rarely go out after all despite, having a new wheelchair that hasn’t helped with the pain and neither has a new mattress. I was getting a bit frustrated and a bit tearful because I didn’t want him to think that I was making up my pain levels, it’s gotten so bad now that my care company keep track and have been emailing the GP to do something about it. So there was little he can do in his department so, I’ve been referred back to Iona Collins my spinal surgeon from 2016 urgently to see if the disc that hadn’t warranted surgery back then has deteriorated anymore (I have a sneaky suspicion it has, we all know our own bodies)

    I’ve also been urgently referred to a pain clinic which in his opinion I should’ve been sent to a long time ago because now this is hard to admit but despite my GPs advice I’ve been topping up my morphine doses When the pain is extremely bad which is also very dangerous but it’s not as if I’m doing it because I want to get high I’m doing it because the levels the doctors prescribe don’t have any affect on my pain. (I only did Oramorph when I absolutely need it because it’s disgusting it tastes like nail vanish remover and I make sure to leave a gap every four hours so it’s not as if I’m swigging it every five minutes) so hopefully they’ll be able to find some medication that will help with the pain and myself and my mum reckons it will most likely be done in pump form.

    So now it’s just awaiting game again so whilst there is hope and positive news, there is also despair because I have to manage with painkillers that don’t work in the meantime.

    Right now I’m focused on getting organised. I’ve got two years with the bank statements digitally downloaded on my iPad and in separate files in order so that if I should need to send a PDF off it can be easily done. (This file which houses my two bank statement files for the past two years is also password protected – Smart thinking eh?)

    Thanks to Mel my PA for my paperwork regarding things like my DLA, car insurance, medical letters it’s all in a nice tidy file with an index so when it comes to filling out forms for student finance it’s easy to find certain pieces of evidence.

    Our next big thing is Mel, is now to take me to to appointments instead of my mum which is a big step for me because I like to have my mum with me but that means she has to take time off work so it’s time to put my big girl pants on becauseI need to start doing things without her.

    Monday we have two jobs to do in our session; set up a diary to keep track of what we do during social hours, track my appointments, pain levels and important assignment date for when I start my degree at home. I’m also going to ring the housing office to see where I am in regards to getting a flat because it feels like I’ve been waiting years now.

    Once we’ve done that, we are planning a trip to IKEA where we going to find some small storage shelves and a small desk ready for me to set my study space/office ready for September. The one thing I won’t be needing? Is stationary. Just a file, my laptop, my printer, dividers and some lined paper and also making sure that I’ve printed out the syllabus for the year and that’s in the front of my fire. We are on the hunt for some nice motivational posters as well – so if anybody can pointing in the direction of some I’d be truly grateful.

    In the meantime I’m hoping it’s not a long wait to get some treatment for my pain because this isn’t the life I envisioned for my 20s. Fingers crossed and I’ll remember to keep you updated.

    Lots of love

    Rach

    What’s on my kindle? Upcoming doctor appointment and Flash Sale reminder.

    • The secret Orphan by Glynis Peters
    • An Orphans wish by Molly Green
    • 59 Memory Lane by Cecila Anderson
    • The Mermaids sister by Carrie Ann Noble
    • A Mother’s secret by Natasha Lester

  • Hey guys,

    I’ve had a few rough days with pain but it’s finally easing. I’m seeing the consultant Thursday and I pray to God that he’s got an action plan because, I refuse to live like this. So I promise you guys that’ll you’ll get an in-depth health update on Friday.


    Don’t miss out on my Carefree and Consequences flash sale too. https://www.facebook.com/events/439983676557254/?ti=ia

    Photos and videos from my trip to Manchester to see Michael Bublé

    That weekend, my dream came true… It has been worth the 12 year wait and pain. Plus, the new wheelchair was so comfortable the entire time. Yes I am in a lot of pain now but travelling via train is so easy in a wheelchair. I just need to make sure the hotel definitely has a hoist before I decide to travel again because, I am in agony!!

    Cannot wait to see what ideas my consultant has for my arthritis treatment wise, I’m hanging on like an acrylic nail after a drag queen’s been in a cat fight. Counting down the hours till my next dose of morphine.

    ——

    A little note to the mother of the severely disabled little boy that was sitting next to me and Michael Bublé,

    Your son and his vocalisations didn’t bother me at all nor did he getting up out of his wheelchair to dance and all them swinging his blanket round and resting his head on my shoulder,

    Sing your son so happy watching Michael on stage was the best thing for me and I’m sorry you can see the whole show because he was tired but, I honestly think you are inspirational parent to go to great lengths to make your son happy. You were subjected to so many eyerolls and complaints From other concertgoers that it really made me angry

    Surely your son should be able to experience a concert like everybody else despite his disability?

    I thought it was amazing when you decided to share with me your story and how your son had never spoken a word until heard Michael sing 10 years ago. Thank you for sharing that moment with me, a complete stranger I thought it was amazing when you decided to share with me your story and how your son had never spoken a word until heard Michael sing 10 years ago. Thank you for sharing that moment with me, a complete stranger, The love and dedication to your son was obvious I just wish other people understood what you have to go through.

    So Jacob’s mum, know that me and Michael Bublé will always be in your corner.

    —-

    A little note to my friend Robyn who I met on the train,

    Sweetie, you’re doing an absolutely amazing job with your three boys and don’t let anyone tell you otherwise or how to parent. We need more people like you working in the NHS, people with kind heart you generally want to be there.

    I hope you enjoy your time in Wales visiting your auntie and I hope we get to meet up soon. Just throw me a text whenever you want some adult conversation from somewhere near your own age.

    Thank you for the book recommendations too.

    NHS: Can we save it from distress?

    The beeps of 

    the stat machine

    are the beating heart.
    The nurses and doctors

    Keep the oxygen flowing

    So that when a crisis starts,

    We can keep on going.
    The smell of antiseptic 

    Is the scent of 

    sucsess and hope.
    Whilst the the warmth

    On the wards wraps

    You in a warm hug

    To keep you going.
    Each pill is dished 

    With tender care, the

    Blue scrubs hide angel 

    Wings under there.
    The food may be basic

    But, for some it’s a decent meal.

    The clean sheets and kind words

    help to heal.
    Yes, it’s under strain 

    And suffering a great deal.

    However besides paperwork and

    Budget cuts, miracles are revealed.
    Life, death all happen here

    Yet, only the unfortunate is

    Revealed.
    Be kind to our NHS 

    and treat with respect. 

    Often it’s a service that people

    Forget.
    So fight for our NHS please,

    Don’t stop! Otherwise we may

    As well stop the clock 

    On the progress we’ve made

    Because it wasn’t saved

    Yet, a vital part: societies 

    beating heart.