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!

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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.

Red sunsets by the River

Silks of red and burnt orange hang in between windows like a staged sunset. Hindi floats in the air as they converse the daily struggles. Their hands are worn and so are their eyes. Even as they beat their washing against uneven stones that stands at banks of rivers the long travelled dust settles on their clothes like snow flakes in the July heat. The maitrachs backs are bent and their movements synchronised Bollywood dancing in scilence with only the hindi and the river’s slaps against the banks to accompany them.

Girls’s innocence are covered in white cloths. This is their future ubless something changes. Inspired by Anna and The King Film.