So guys I am getting ready to start my course in September. So I needed to get organised pronto! Here is some photos of my room that liven it up a bit. All that’s left to buy is two more blue canvases, blue bedside lamp, and a stick on mirror.
Can’t wait till Monday when I can make my positive affirmations board with Mel, then on Tuesday we’re are tackling my cupboard to try and organise it and make charity donations. Lastly on Wednesday, it’s sorting out any old clothes for the winter charity collections!
Also we’re going to make bath bombs and bath salts and sell them and Christmas fetes!
Cannot wait to do Christmas baking!! and walk the race for life and FINALLY do my degree (It’s going to be keeping my mind off of all medical hurricane it’s going to be happening once I see pain clinic and back surgeon)
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.
So the injections that I thought were going to ease my arthritis aren’t going to happen. All this because my arthritis is no longer in my joints but is now in my muscle tissue I asked the doctor about steroids and she wasn’t too nice about it I even asked for diazepam and repeat prescription but all she kept banging on about was addiction.
Meanwhile I’m in daily agony. All that she says was she was going to refer me back to the original department where they can deal with me.She make me sound like a 20-year-old begging for drugs just to get high not to function.
I only found out because I chased up radiology by phone. When I said to the doctor about this she said ‘oh I was going to drop you a line eventually,’how long is eventually?
Myself and my mother are going down there some point this week to sit face-to-face to her and drive home how serious the situation is. She had no empathy even when I was crying on the phone, she did not understand how much this is taken of my life. I’m also reporting her to the general practice board because she was so rude and kept talking of me when I was trying to explain things, making me frustrated.
So whilst the specialists play tennis back and forth With what to do about my health I have a few Diazepam’s left, Naproxen which doesn’t do shit except make me tired and morphine that just turns me into a zombie or an itching, sweating mess.
When I know more I’ll let you guys know as this is the purpose of my blog. By the way my Ami flared up massively today so I couldn’t go on a picnic with my carer, I literally spent the day sleeping with a massive migraine.
But never mind I’m just focusing on selling my book and counting down the days until I see Michael Bublé. You need something positive and keep to going right?
Don’t forget the carefree and consequences is available to buy on Amazon. It even has its own dedicated page on here where you can read peoples comments and reviews. Some people like it because it reminds them of Paul’s Zindels ‘darling my hamburger’ It is set in the 1950s and has a similar storyline to mine. Did I also mention? Carefree consequences, is being turned into a series with the three books?
I’m not done with the Alexander family and their friends just yet.
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 a 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!
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.
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.
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
As you all know I want to the hairdressers (before having to jumpstart my car) yesterday and I spent three hours getting my hair done and being pampered the only thing is it my back to be at the basins and to be in my wheelchair for so long. The result? I’m beautiful but, fuck me I hurt.
So today I haven’t even gotten dressed and basically did book promotion from my iPad in between naps and food. Does anyone not eat proper meals when flaring? All I want is seeded toast, bananas and green apple and yogurt,
Before you ask yes I will be taking it I will be taking a diazepam tomorrow to try and reset my body. I don’t even know if I’ll stay awake for Call The Midwife. In my chronic fatigue case I managed to spend £27 on kindle books. so at least I’ll have a lot of books to keep me occupied for a couple of days.
The proof copies of my book came for Carefree and Consequence, they look awesome. If you haven’t got your digital copy or paperback there is a link in my blog that will take you there. I always appreciate reviews however small.
I hope my fellow spoonies are okay?
Looking forward to setting up my author bank account for my royalties tomorrow I’m doing taxes with my grandparents. I want everything to be a bit bored so I’m saving every seat related to writing whether that be computer software or stationery. I was surprised at how much you can claim back on expenses.
PS I also applied for a flat in Talbot Green today.. wish me luck!