So it’s been quite a while since my last post in July 2020. In that post, I talked about some of the setbacks that I was facing late last year.
Like most people, 2020 was a bit of a write-off for me. I had so much on my plate that something had to give , and unfortunately it was this.
I don’t want to go into too much detail, because I want Chronically Clumsy to be a constructive and motivating corner of the internet, but I do think it’s important to discuss what happened so I can share what I learned.
So, quick cliff-notes version of the last 6+ months’ health challenges:
- Corticosteroid injection to the right sacroiliac joint under sedation (yes, the EDS risks were carefully weighed)
- Major ankle surgery – removal of osteochondral lesion, micro fracturing of the bone, recoreconstruction of the ATFL and CFL ligaments, and an internal brace
- Pain medication barriers to access
- The annual Christmas and New Year flares
- POTS medication changes after a prolonged exacerbation of symptoms
- Mental health crisis
- (And literally today) more return-to-internet technological problems than you can poke a stick at!!
What I learned
I think the biggest thing I learned is which people in my life will really step forward and show up to help me when I’m at my lowest. The people who will help me take care of myself, help around the apartment, keep me connected, and lift my spirits.
I also had the opportunity to use the new coping skills that I had learnt over the last year. I had, at least what I would call, a mental health crisis, both in terms of my depression and my ED. I had a lot of help from my psychologist and support people, but I’m very proud to say that I made it out of the acute escalation and am slowly on my way to getting back to baseline. One of my things that I found most helpful was now knowing the difference between a lapse and a relapse, and already having a solid relapse prevention plan in place so that when I saw those warning-sign thoughts and behaviours, I was able to simply follow a series of pre-arranged steps to access the supports I needed.
I also learned a lot about communication, and the extreme importance of not undermining myself by under-reporting the severity of my symptoms to my treatment professionals just because ‘other people probably have it worse’ or for fear of being overdramatic.
The good stuff
All that being said, it wasn’t all doom and gloom, and I’ve made some positive changes which make my life so much better:
New assistive tech
I’ve definitely upgraded my AT over the last year, and while it’s sometimes been confronting, it’s made a huge difference:
- I’m now using my shower stool full-time, even if I feel like I’d ‘probably be ok’ I’ve realised that the amount of energy I save just by sitting every time means so much less post-shower recovery
- I’ve upgraded my ring splints to include one for almost every DIP and PIP joint, plus thumb MCPs, and changed the PIP rings to a style that accounts for a greater degree of hypermobility
- Added grab rails to the shower and next to the toilet to help with sitting/standing safely
My boyfriend and I had been wanting to add a fur-baby to our household for some time, but the timing was never right. Well, I’m super excited to introduce Mittens, our beautiful three-year-old rescue who we adopted at the end of January. She’s a bit like me, anxious and tentative, but it’s been such a joy watching her grow and learn.
Where to from here …
I’m also finally re-applying to the NDIS (National Disability Insurance Scheme)- the government-funded provider of disability services. I have a more comprehensive post about this coming soon, but it’s a pretty gruelling process of assembling comprehensive reports from all the relevant people that use the right language.
I’m also planning on sitting down with HR and having an open and honest discussion about my disability, now that I’m on a full-time and permanent contract. In the past, I have withheld from sharing a lot of my struggles with work for fear of being seen as less employable in a very competitive industry.
However, I recently realised that not only is this disadvantaging me, by preventing me from accessing supports because I haven’t disclosed that I need them, but that I was also contributing to the an ableist system where people with disabilities are viewed as less capable or less employable.
VERY long story short, it’s been hard, but I’ve made progress. It’s been hard-won progress, but that just makes it all the more valuable, and everything being said, I can look back at the last several months with the confidence that I have come out the other side far stronger.