Health update/getting organised

So as most of you know yesterday afternoon I went to go and see my consultant about the pain in my back and my hips.

My mum is always being you don’t need to take a handbag with you I’ve got everything we need well somebody was happy when I had an array of snacks for her to choose from while we are waiting! Not to mention my kindle. It was like, I was the mother and she was the child!

I felt like I overtook because when we go to receptionist desks and they asked my address they immediately look to my mum instead of me and she uses recites it, not this time.

So me what I should and to see the consultant and basically what she said was that he was happy that my hips were healthy for somebody in their 20s with cerebral palsy who sits down all the time, my mum was worried I need a operation thank goodness that is not happening. and from his point of view he was happy that there was no information of my arthritis in my facet joints…

I explained to him the pain that I was getting was quite severe and that I can only bathe once a week and I will rarely go out after all despite, having a new wheelchair that hasn’t helped with the pain and neither has a new mattress. I was getting a bit frustrated and a bit tearful because I didn’t want him to think that I was making up my pain levels, it’s gotten so bad now that my care company keep track and have been emailing the GP to do something about it. So there was little he can do in his department so, I’ve been referred back to Iona Collins my spinal surgeon from 2016 urgently to see if the disc that hadn’t warranted surgery back then has deteriorated anymore (I have a sneaky suspicion it has, we all know our own bodies)

I’ve also been urgently referred to a pain clinic which in his opinion I should’ve been sent to a long time ago because now this is hard to admit but despite my GPs advice I’ve been topping up my morphine doses When the pain is extremely bad which is also very dangerous but it’s not as if I’m doing it because I want to get high I’m doing it because the levels the doctors prescribe don’t have any affect on my pain. (I only did Oramorph when I absolutely need it because it’s disgusting it tastes like nail vanish remover and I make sure to leave a gap every four hours so it’s not as if I’m swigging it every five minutes) so hopefully they’ll be able to find some medication that will help with the pain and myself and my mum reckons it will most likely be done in pump form.

So now it’s just awaiting game again so whilst there is hope and positive news, there is also despair because I have to manage with painkillers that don’t work in the meantime.

Right now I’m focused on getting organised. I’ve got two years with the bank statements digitally downloaded on my iPad and in separate files in order so that if I should need to send a PDF off it can be easily done. (This file which houses my two bank statement files for the past two years is also password protected – Smart thinking eh?)

Thanks to Mel my PA for my paperwork regarding things like my DLA, car insurance, medical letters it’s all in a nice tidy file with an index so when it comes to filling out forms for student finance it’s easy to find certain pieces of evidence.

Our next big thing is Mel, is now to take me to to appointments instead of my mum which is a big step for me because I like to have my mum with me but that means she has to take time off work so it’s time to put my big girl pants on becauseI need to start doing things without her.

Monday we have two jobs to do in our session; set up a diary to keep track of what we do during social hours, track my appointments, pain levels and important assignment date for when I start my degree at home. I’m also going to ring the housing office to see where I am in regards to getting a flat because it feels like I’ve been waiting years now.

Once we’ve done that, we are planning a trip to IKEA where we going to find some small storage shelves and a small desk ready for me to set my study space/office ready for September. The one thing I won’t be needing? Is stationary. Just a file, my laptop, my printer, dividers and some lined paper and also making sure that I’ve printed out the syllabus for the year and that’s in the front of my fire. We are on the hunt for some nice motivational posters as well – so if anybody can pointing in the direction of some I’d be truly grateful.

In the meantime I’m hoping it’s not a long wait to get some treatment for my pain because this isn’t the life I envisioned for my 20s. Fingers crossed and I’ll remember to keep you updated.

Lots of love

Rach

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The Forgotten Children of Romania

Watching this documentary on Channel 5 about finding a home for Romanian disabled children and I’m not ashamed to say I’m crying! So grateful I live in the UK and have fantastic care and facilities unlike these children through no fault of their own. END INSTITUTIONALISATION! Everybody has a right to a good quality of life!

If you want to see how disabled children are treated in eastern Europe, go to YouTube and type in ‘The forgotten children of Bulgaria’. I don’t understand why people aren’t intervening.. . this iso inhuman!

Life in a wheelchair: A summary

Dear able-bodied people, this is the summary what it’s like to be in a wheelchair and I hope you never find yourself in that situation. But,if you do, be prepared to be the ‘inspiration’ to your friends, even strangers just for doing silly things like; taking a train ride without a ‘caregiver’. Of course you’ll face discrimination but of course ableism too and the list below is just a small insight:

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.

At my mentors book signing

On this day my best friend gave me a typewriter; was the day I became a writer

The rest of thee photos show me in my wheelchair in New York City on a visit in 2014

All personal photos ©️ Rachel Marie.

I hope you all enjoyed this post and have learnt something from it. It is so easy to fall into these habits, people in wheelchairs are just people who want to get on with the day, not to necessarily be your inspiration or make you feel good about yourself if someone in a wheelchair is asking for help and doing it for praise or major props with friends and family. You don’t help someone because you feel sorry for them You do it just because you saw another person struggling to get through the day and needs a hand to make it better

You don’t get an instant helo around your head. Be aware of ableism, it can be very patronising and eeven border on bullying help us in the disabled community stamp it out by not doing the things on the above list.

Many thanks,

A Wheelchair user, who is also an author and has Chronic fatigue syndrome but she still remains to be bad ass with her humor and has a wardrobe bursting with vintage clothes… My friends think she has a shopping problem not just the vintage clothes for her on dying love for reading and needing a box to writing my friends think she has a shopping problem not just the vintage clothes for her undying love for reading and and need to buy notebooks to wwrite her short sttories in

By the way, my debut novel, carefree and consequence is available to buy on my blog for which will take you Amazon. The reviews speak for themselves. Available in paperback, hardback large print and, kindle. You don’t actually need a Kindle device to read this book you can just download it from your App Store. Or aask in your local library to order you a copy.

My second project is completing a list of writing prompts and putting them together in an anthology for sale. There are so many genres I can showcase then with this book. You can see my romantic side, you can see my funny side, you can see my spooky side, you can see mmy thriller side and you can see my serious side too. It will be a mixture of poetry and prose and trying to finish it by March 7 2021.

For now, go buy my book and see how you like my romantic side and love for the 1950s