Tag: wheelchair

Health update/getting organised

~ Rachel Marie Writer ~ Leave a comment

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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Photos and videos from my trip to Manchester to see Michael Bublé

~ Rachel Marie Writer ~ Leave a comment

That weekend, my dream came true… It has been worth the 12 year wait and pain. Plus, the new wheelchair was so comfortable the entire time. Yes I am in a lot of pain now but travelling via train is so easy in a wheelchair. I just need to make sure the hotel definitely has a hoist before I decide to travel again because, I am in agony!!

Cannot wait to see what ideas my consultant has for my arthritis treatment wise, I’m hanging on like an acrylic nail after a drag queen’s been in a cat fight. Counting down the hours till my next dose of morphine.

——

A little note to the mother of the severely disabled little boy that was sitting next to me and Michael Bublé,

Your son and his vocalisations didn’t bother me at all nor did he getting up out of his wheelchair to dance and all them swinging his blanket round and resting his head on my shoulder,

Sing your son so happy watching Michael on stage was the best thing for me and I’m sorry you can see the whole show because he was tired but, I honestly think you are inspirational parent to go to great lengths to make your son happy. You were subjected to so many eyerolls and complaints From other concertgoers that it really made me angry

Surely your son should be able to experience a concert like everybody else despite his disability?

I thought it was amazing when you decided to share with me your story and how your son had never spoken a word until heard Michael sing 10 years ago. Thank you for sharing that moment with me, a complete stranger I thought it was amazing when you decided to share with me your story and how your son had never spoken a word until heard Michael sing 10 years ago. Thank you for sharing that moment with me, a complete stranger, The love and dedication to your son was obvious I just wish other people understood what you have to go through.

So Jacob’s mum, know that me and Michael Bublé will always be in your corner.

—-

A little note to my friend Robyn who I met on the train,

Sweetie, you’re doing an absolutely amazing job with your three boys and don’t let anyone tell you otherwise or how to parent. We need more people like you working in the NHS, people with kind heart you generally want to be there.

I hope you enjoy your time in Wales visiting your auntie and I hope we get to meet up soon. Just throw me a text whenever you want some adult conversation from somewhere near your own age.

Thank you for the book recommendations too.

A simple trip to Asda: Red Milk, Red Button.

~ Rachel Marie Writer ~ Leave a comment

Myself and my carer during my social hours today went over to the local supermarket so I can get my mum some milk. So after we picked up some milk, shower gel, two paperbacks, two lots of feminine products and some melon (and ten cookies, the five were for me and the rest were for the food bank.)

So as we leisurely stroll home I decide I want to go and read in the garden for the afternoon whilst it’s so sunny… Nothing with me is ever simple. I was going down my ramp and it must’ve moved or something because I became wedged and stuck in my wheelchair.. we tried to pull and yank the wheelchair off the ramp and onto the concrete but it’s not having it. So, in the end, I had to press my lifeline and I never thought I’d say this but thank God for them! They managed to put the chair in the Manual Mode and shift it themselves.., I’ve never been so embarrassed in my bloody life I think I need to lay off the cookies and Cake.

They took 20 minutes to come so if you think about it I did have an afternoon in the garden but wedged on the ramp with tea my pink flask. When they came I quickly scurried inside my cheeks red with embarrassment (thank God for the neighbours at work) and I started to read the rest of the afternoon but like me; I slept.

What did I panic or cry when the ramp incident happened like I usually would have? No. As I’m going out now I can feel my anxiety lessening and soon hopefully I’ll be able to go on my own.

I’m just proud of myself that I went to go with the flow and not panic I do not even ring my mum she was actually the first one to ring me this morning to see if I was okay as I was engrossed in the BBC drama years and years!

Great news as well, my new wheelchair is coming Friday so I’m going to be the belle of the ball at the Bublé concert with my new wheels, take that crazy Dave!

Sometimes you Gotta look at the funny of life

Enjoy the sunshine everyone and stay safe. Warning: going to buy red top milk will cause you to become wedged on ramps!! (mind you will has the bloody thing for years I think it’s due a service at least the new one by now.

Health update… read the news about carefree and consequences and don’t forget to buy your copy.

~ Rachel Marie Writer ~ Leave a comment

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.

Read the first one while you can.

Fashion Friday: HELP

~ Rachel Marie Writer ~ Leave a comment

Ugh.. how hard is it to find an outfit for a @MichaelBuble concert with a budget of £75 for dress, shoes, and bag? I 💙light blue and want to wear an evening gown as I’m 21 and my usual tea dresses I see as day wear soooo Nothing too short because of catheter and not too long bc wheels💙 Every detail has to be perfect. I’m going to be in the room with the Frank Sinatra of our generation. He might not see me in the crowd but, this going to be the best night ever. FYI to my date; scrub nice and no moaning! you are making your daughter tearfully happy.