Writing Challenge Day 5: 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!!

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New start didn’t get get off to a great start

So last Friday it was my first full day at university. The night before didn’t go to plan what with no phone signal and having a small bladder spasm but, I survived.

I had breakfast, put on some makeup and went to explore the freshers marquee and explore the campus a bit more.

It may have been cold and grey but to me the day was hopeful. It was lovely to see the campus blooming with its vibrant inhabitants. 

I bought my freshers ticket, intending to make the most of every second on having fun. I joined tonnes of campus programs including the disabled Student’s Union, the sustainability project and volunteering with the elderly. The theme of the tent was a spring picnic but, I couldn’t help wondering if they were trying to copy Bake Off…

I went back to my room after having lunch with some student nurses and after a dodgey lunch the day before and needed the loo, transferring myself and requiring help to get back in my chair, the university decided I’m unsafe to live on my own and require 24/7 care when, in actual fact I have three calls a day and my family wouldn’t have encouraged me to live at uni if I wasn’t safe.

Going behind my back, they rang my mother and told her I had to get off campus. So I’ve spent freshers week at home…

We had a meeting with the university and they tried to say there is a risk to other students that I need the loo. I know to ring my nine emergency numbers or the district nurses, it’s not as if I’m going to announce in a lecture; ‘Hello! I need to deficate! Would someone help me?!’ They were just making excuses.

Anyway long story short, they are letting me back on campus Monday and giving a two week review as to wether they think the care package is sufficient(!) 

They even had the cheek to ask me to defer! I know that I would harm myself if I had to spend another year at home.

I’m just glad I’m back for lectures! Just gutted I’ve missed freshers and bonding with my flatmates!

Let’s hope the care plan gets the big wigs approval today… fingers crossed! Stay tuned for an update!

Diary of a Chick On Wheelz: Physio and overcoming Catheter Anxiety.

On Tuesday they came to fit two new hoists; one to get me on the stairlift and one on a gantry to get me above the step into the bathroom. It took seven hours but it was worth it and as I was constipated I needn’t feel guilty about needing to use the toilet several times. It was a relief to know I wasn’t hurting my mother’s back.

We also had a visit from the adult physio therapy team and we’ve all agreed that standing and getting back to walking isn’t feesable. It was nice to have my input valued and not to be patronised as with pediatric physio teams. I also explained my dislike of hydrotherapy because of being patronised and they assured me it wouldn’t be like that so, now they’ve found me an accessible pool near my university in September and for now there is a ‘disabled swimming session’ near me every Friday. I can just swim lengths without specific stretches, under a scheme where I get consessions.

I stood up for myself in regards to more Botox too as the pain afterwards isn’t worth it. It was just lovely to be listened too.

Yesterday I had my catheter changed by a lovely nurse who answered loads of our questions in regards to spasms after having a bowel movement and came up with an action plan. I was prescribed diazepam and took 5ml of morphine to help with anxiety and pain, I’m not used to the out of control feeling so originally I fought it but did relax eventually. We have a system: the nurse holds my stomach back whilst my mother holds my legs and applies heat with a hot water bottle and I can pull it out. I was so proud! I’m having it changed in six weeks to see if it is easier but I’m still waiting for an ultrasound from urology to see if my tube has narrowed. 

After that, I went to the salon and pampered myself!

I’m also in the business of practicing putting on makeup but with CP it ain’t easy. Two words: drag queen!

16 things they don’t tell you about having a catheter 

  1. Orange juice may as well be acid.
  2. When it’s changed every month it’s like your guts are going to explode.
  3. You constantly wonder if you smell of asparagus.
  4. Periods and catheters don’t mix.
  5. You become an expert at unblocking.
  6. It blocks after you use the bathroom.
  7. You will bypass the catheter when your on the toilet and the tiniest drop of pee being passed is like shitting through a needle.
  8. Don’t wear jeans or have tight waistbands.
  9. You end up bring on first name terms with nurses in the emergency room.
  10. The bags will leak.
  11. Peeling off a statlock is like a painful wax.
  12. Trapped wind and catheters don’t mix and neither does constipation. 
  13. In your first few weeks or if your like me, you’ll change your bed sheets a hundred times.
  14. Try not to rely on the bag, I’ve ruined my bladder muscles and am now paying for it.
  15. Don’t over drink. Or drink too quickly.
  16. For God sake don’t kink the pipe!

Things you need to know about life in a wheelchair.

1) When you take your wheelchair for repair, you won’t see it again for 300 years.

2) people immediately use singsong tone of voice when they see a person using wheels.

3) You always have to act grateful for help you didn’t need.

4) A shop isn’t accessible if it’s got a tiny step at the front.

5) People pat your head and bend down to you.

6) Don’t leave your chair in the sun, you’ll burn your bum when you get back in.

7) You will be confronted with the miracle in the alcohol meme and so called friends will find hilarious.

8) You always get the view of people’s behinds.

9) doorways being too small.

10) Ableism and inspirational porn.

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!