Embarking on a new project..

Hello everyone!

I hope you’ve had a good Christmas? I’ve just finished a good book called Speechless by Kate Darbishire about a girl called Harriet who has cerebral palsy starting secondary. I read it within two hours, it’s amazing that despite our different severities of Cerebral Palsy it was comforting to see that she went through the same struggles I had in school. My question to you dear reader is this; would you like to read about the highs and lows of my school days? I feel in regards to Disability and in particular, teens going to mainstream education that things need to be changed, things that should have been changed and abolished in the ’70s and how at the same time how I was treated like a normal student. I feel like this is the right place to start. FYI to all old teachers and friends nicknames will be given to keep you anonymous!

Should I go for it? Even if I don’t publish it, I think I’ll do it, it’ll be cathartic!

Let’s review 2018/ what I want in 2019

Here are all the good things that happened in 2018:

  1. I got offered a publishing contract
  2. I got a job in PR
  3. I was on the news
  4. I got some work experience in broadcasting
  • Now here’s all that I want to happen in 2019
    1. Get my romance novel published
      Get my pain levels under control
      Help more people with my blog.
      Get my own flat
      Go on a date
      Get my wheelchair adjusted
      Get a new armchair
      Get a tattoo
      Eat healthier
      Be more positive

    What were your 2018 highlights? What do want to happen in 2019

    My Mental Health Journey/Advice

    I was inspired by a thread on twitter where people were brave enough to share their mental health journeys and so I decided to share mine with you.

    In 2014 was when it got really bad, I think the trigger was that my health was deteriorating and I felt that the doctors weren’t listening to me because I knew there was something wrong with my back, I kept being fobbed off. I was also being badly bullied. (I couldn’t say anything because it would have made things awkward, looking back I wish I did.)

    I started not caring about my school work, wanting to eat and sleep all the time and just feeling black. I felt like I was a burden to everyone. It didn’t help that my chosen career path had been blocked by a teacher. It was the last straw. It just all started crumbling down around me. I suddenly began feeling that I wasn’t good enough.

    So I went to my GP and have been on Prozac ever since. Even now when I’m a 1000 times better then I was, I can’t get out of bed without it. I also found counselling helped me find coping mechanisms like blogging, I realised during my sessions that I’d locked a lot away and buried it deep and facing it was the only way to win.

    No I’m not cured and yes sometimes I do get overwhelmed and fed up but, sometimes you need to be the hero in your own story and to want to be better. Yes, I’m finding things tough at the moment but they will pass. I found that I had to remove myself from toxic situations and friendships to get better and to trust that this is part of my journey in life.

    I now live by the quote:

    If you don’t deserve me during my worst, you don’t deserve me at my best. – Marilyn Monroe.

    This Christmas will be a very anxious time for some of you and I am here if you ever need to blow off some steam. It sounds corny but it will get better. Depression isn’t something you can ‘snap out of’, it’s something you need to learn to live alongside with and accept that there will be bad days but, you’ll have amazing ones too.

    Make 2019 the year of positivity and taking care of you.

    For example, I vow to start eating properly even when I’m in pain, to go out more and not lock myself away and to say ‘No’ to things that I don’t want rather than letting people walk over me or answer for me.

    What do you pledge for in 2019? Let me know below!

    My top 5 books that feature a disabled character/ Theme

    1. Skallagrigg by William Horwood – A story about a boy with Cerebral Palsy in the 1930s and a girl in 1970 who also has Cerebral Palsy and their search for the mystical skallagrigg sees their worlds collide. It’s also a look at the evolution of people’s attitudes towards people with disabilities. Plus Esther is badass!
    2. Amy and Matthew by Cammie McGovern – A cute little love story featuring Cerebral Palsy and OCD.
    3. House Rules by Jodi Picoult – A courtroom drama with an autistic main character.
    4. Red sky at dawn by Elizabeth Manning – A little boy diagnosed with Cerebral Palsy and you see the effect on the family.
    5. A step towards falling by Cammie McGovern – A book about two high schoolers on punishment helping a class of young adults with learning difficulties. It also deals with sexual harassment.

    Bone scan

    Hello readers!!

    So yesterday I had my bone scan for my arthritis. I can confirm that I now know how it feels to have radioactive dye in me, being strapped down to a bed and rotated like a rotisserie chicken!!

    I lit up like a glow worm on steroids. I now have to wait for my injections and fight with my GP to start anti-inflammatories… joy.

    Who said life is boring?!

    Fast forward to today and I’m in agony… surprise surprise!!

    By the way, the radiology department needs to come up with a less frightening name than nuclear medicine, it doesn’t exactly put you at ease.

    Apparently, my veins are thin and spindly.. great!!

    Catheter tips

    If like me you have a catheter and it can get on your nerves, I thought I’d share some of the pearls of wisdom I’ve picked up over the last three years that might help:

    1. Don’t rely on the bag, if you can use the flip flow instead otherwise you’ll lose strength in your bladder muscle resulting in bypassing. Trust me, I’ve learnt this the hard way.
    2. Avoid fizzy drinks or herbal tea, this can irritate your bladder and result in larger crystals which can restrict your catheter flow.
    3. Learn to love elasticated waistbands. Skinny jeans and catheters don’t mix!!
    4. Try and avoid the trapped wind. It can result in pressure on your bladder and make you bypass! So lay off the sprouts this Christmas.
    5. If you’re at college or at work be sure to carry a spare leg bag in case of blockages.
    6. On long journeys keep a flask to hand in case you need to empty and there are no toilets around.
    7. Change your bag once a week.
    8. If like me and you have a have a super pubic catheter avoid using scented soap – just a gentle wipe every so often with an alcohol wipe is best.
    9. Bladder spasm tablets are your friends
    10. Lastly, be prepared for some blood in your urine and for your site to be extra tender during your menstrual cycle.

    Arthritis update.

    So this morning I got my appointment through to have the steroid injections in my back, it’s next Monday. It can’t come soon enough! I just hope they work, I’m sick of taking morphine with it not doing anything. Hopefully after that my GP will finally put me on some anti inflammatory.

    If any of you have any tips of how to manage spinal arthritis please let me know! I’ll try anything!

    I’m currently waiting for a new arm chair and waiting to get my wheelchair adjusted. They say that movement is best but when you’re wheelchair bound, that kind of goes out the window. It pisses me off that my body is so complicated!

    I have anxiety about going outside just in case it’s cold or wet and I flare up! It’s ridiculous! I know they said winter was going to be tough but I didn’t imagine flare ups every week!

    Does anybody else get a headache when your pain flares up?

    Please drop me a line, I’d love to get to know some other young adults with the condition.

    Love,

    Rachel