I know I haven’t done a book review in a while and that is the second job of this blog… So on the 25th June after my exams I will be doing several book reviews featuring these authors:
- Lindsey Kelk
- Lucy Diamond
- Margaret Thornton
- Margaret Dickinson
So If you love Comedy/Chicklit/Sagas this post will be for you.
I’ve just heard about the evacuation in Manchester and Trump pulling out of the climate deal. It seems we need to be resilient against terrorisim AND Global Warming.
Today I’m flaring but I still managed to have a physio session working on upper body strength with motorised pedals and do a 45 mark past paper question. Just get on with it! This is in spirit of my poem ‘Just get on with it’ which is being published in the young writers Super Mum’s Anthology in August,
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!
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.
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!
For every key I press I’m closer to completing coursework and my short story entry.
Quick nap for an hour, lunch then back to the grindstone, English Language this afternoon – At least I’ve completed my coursework, just waiting for feedback then on to the next draft.