21st September 2020: Organised Chaos

**ORGANISED CHAOS**

My working space currently looks like I’ve been sat at the desk for 6 months… Oh wait…

So, I’ve cleared it all off onto the single bed used for my day rest, and then made the desk messy again!

Organised chaos of prepping the mid-year diary!

All for a good reason though…

It’s WELCOME WEEK at CCCU which means NEXT WEEK is the START OF SEMESTER ONE!!!

It’s time to prep the mid-year diary and get myself ready for the upcoming few months. How am I feeling? I’m excited and nervous… Mostly nervous, but I’m also feeling ready to give it my best shot!

I’m heading into Level 5 with more preparation and with more planned support, because I am really anxious about having a repeat of last year. I still have blips, which are normal and I know I still have a long way to go, but I feel more supported and I am feeling grateful for the people who have been there for me throughout this challenging time. 

I’ve spent the past couple of months supporting future students on Unibuddy (see my profile here) and I’ve been doing some Student Ambassador work opportunities too. These have helped me find and hold onto all the positives that university has to offer.

I’ve also been supporting Kellie Schafer on the Peer Mentoring Training Programme, which has been completely and utterly nuts! I mean, 👋 Imposter Syndrome! 😂 I’m so grateful for the opportunity. I feel really supported by Kellie and I’m holding onto the belief she has in me!! Training other students to become Peer Mentors and PAL leaders wasn’t exactly something I thought I’d be doing so soon, but oh my! It’s an incredible journey and it’s helping me build my confidence and presentation skills! (As well as the obvious, in that it helps me with my degree!) I have huge respect for Kellie and I’m inspired by the dedication she puts into her work. She is so passionate about the effects peer mentoring has, that she just wants the best out of the CCCU student peer mentoring and with her leadership skills and training, that’s exactly what she’s getting!

All exciting stuff, right?!!

It hasn’t all been plain-sailing though. Aside from the manic few weeks, I’ll be heading into uni in a slightly different way…

My mobility has been taking a turn for the worse over the past month that I have required the use of a wheelchair to get out and about. I’m currently unable to walk or stand for a long period of time without becoming severely fatigued or in a lot of pain. Chronic pain sucks, and for me it’s flared up at one of the worst times possible! However, undeterred by this setback in health, I’ll be embracing the ambulatory wheelchair use (AWU), as a means to getting around more, which means trying not to feel anxious about the judgement and stigma associated with AWU.

Electric wheelchair kitted out with front and rear lights, mirror and bike bottle holder.
Charged and ready to roll…

It is going to be strange, no doubt, to all those who know me. I’ve been seen struggling with my crutches or my rollator, and even without any aids for the short distance from the teaching room to the toilets and back. I am certain it’ll raise a few eyebrows, but one thing I’m certain about, and it’s what I’m focusing on is that it helps me SO much! I have been using it over the past couple of weeks and I wished I had gotten one sooner as it would have prevented a lot of pain and fatigue over the years.

You may wonder why now? Well, I first started using walking aids just under 13 years ago. Using folding walking sticks, crutches, self-propelled wheelchair, transit wheelchair and in most recent years, a rollator. I have been doing my best to keep my mobility – Walking where I can, as much as I can, and often pushing myself too hard (I’m stubborn, so that doesn’t help!)

I have been unsteady on stairs for a good few years now. We still don’t know why this is. Going up causes fatigue, and going down causes lots of wobbling. I have to concentrate on each step, just to make sure I make it! It’s very frustrating – Especially when I used to be able to run up and down stairs as a kid, and how 19 year old me used to be able to climb the stairs to the nightclub in heels, dance away, have a few too many drinks and still make it down in one piece!

Yet now, it has become evident that whilst my symptoms are fluctuating, and each day is different, it is also degenerating.

You’re confused? Me too.

My current diagnosis’ for my physical health are:

Hypermobile Spectrum Disorder

Fibromyalgia

Chronic Migraine

Hemicrania Continua

Primary Stabbing Headache (aka Ice-Pick Headache)

GI Dysmotility

I also have recurring tenosynovitis (De Quervains Syndrome).

There are still many appointments to attend, and I’m still awaiting further tests and examinations to come through (One being HSD to hypermobile-Elhers Danlos Syndrome aka h-EDS … Although similar and are often treated the same, there are differences which equate to a different diagnosis).

We’re connecting the dots, and sometimes these dots go off the page. We lose track of what’s going on and we start all over again. Needless to say, it’s exhausting – and not just physically! It grinds me down mentally too.

I have a lot of neuropathic pain, and at the moment this seems to be the cause of my sudden onset of pain, leg weakness and severe fatigue.

Lady Gaga Quote
Image found on Pinterest, first posted on MightyWell

I write this not for sympathy, but for awareness – Specifically for ambulatory wheelchair users and for hidden disabilities. Much like mental health, there are disabilities which cannot be seen. This leads to a lot of prejudice and stigma. Just because you cannot see it, or because I “look” fine, does not mean that I am. Just because I don’t moan about my pain 24/7, does not mean that I’m not suffering – Because I am.

There is a great analogy called ‘The Spoon Theory’, which I love. It’s by Christine Miserandino, and can be accessed here.

The Spoon Theory Breakdown (Image from Pinterest)

So, as I wind down from this post, I want to clarify a couple of points: I didn’t want this post to end up being a sad story about chronic illness or anything. I wanted to explain, that this academic year, I’m going to be braver than brave. Last year was a tough transition to university. This year, it’ll be just as tough, if not more so. But I have made sure I have all the support, and over the past 6 months I have certainly worked through all the determination and dedication needed to “survive” the next few months.

Chronic illness or not. I’ll be sure not to be defeated. I am excited and I am very anxious. These are normal feelings. I know things will be different this year – And that goes for everyone!! Afterall, we are still in the midst of a pandemic.

It will be important to acknowledge how others are feeling, and if my “hidden” disabilities are anything to go by, and what I’ve explained in this post, is that invisible or not. This is all very real to the individual.

Be kind. Support. Listen. Do not judge. It’s been a rough ride for us all. There’s been a lot of changes. A lot of growth. We still have a long way to go, but we can start by doing all these things.

A final note (as I have to laugh), this was originally going to be a simple status with the first image of my messy desk. You see, it’s not just organised chaos on the desk, it’s in my mind too.

And here’s something to think about: Always reflect. Think. Create.


All links in this post correct 21.09.2020

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