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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