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 1930’s 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 court room 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 need 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 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’s 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.

Dear Diary,

Hello and welcome to my blog!

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

A new diagnosis.

So as you guys know I had my MRI results last thursday and I have been diagnosed with degeneritive arthritis in my Fasset joints and spine. Am I relieved it’s not something sinsiter? of course, that goes with out saying. But, the fact that there is no permenant fix is disappointing. Now I am waiting for wheelchair adjustments as well as a radiology appointments for injections… sigh.

What’s annoyed me already is the sterotypes that people associate with arthritis, for example, the elderly or children and that is not much support for working professionals in their twenties.

I don’t want to be on morphine forever but if that’s what I need to work and enjoy life then I haven’t really got a choice.

I’m not writing this for sympathy but for awareness and wanting to let other people know they aren’t alone.

I can finally say to the people who say it’s in my head to go and fuck themselves.

If you know of any online support groups please let me know, there’s no time for a pity party I have to rock the PR world. I’ll keep you all updated. This winter will be tough but, I am tougher.

This is not the end
I’m down now
But I’ll be standing tall again
Times are hard but
I was built tough
I’m gonna show you all what I’m made of  – Cher.

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!