Thursday, 24 November 2016

An Update...

I've been a bit quiet on the blog front lately, and while I plan and wish to maintain a presence on here, my posts will continue to be sporadic, but there's good reason for that, as I will explain...

First off, this blog is a labour of love and my passion, and while I'd love to dedicate more time to it and post to a regular schedule, my time and energy is limited by nature of my disabilities, and the fact that life keeps getting in the way.  Recent developments in particular will have a big impact on my presence here over the coming months for better or worse.  While I feel some guilt and disappointment at that fact, I feel I owe it more to you readers and myself that I deliver quality content when I can rather than sub-par content on a regular basis.  So looking looking after myself, not spreading myself too thin, and forgiving myself for not meeting those expectations of quantity and quality combined on here is the only way I can do that.  As always, follow my social media accounts so you can get a heads up whenever I DO post!

But onto some more exciting news and the reason my life has been so chaotic lately...

On the health/medical front:
Physically, my health has been really good lately, with a lot of developments on the medical front.  After three years of back and forth referrals and sitting on waiting lists, I was finally seen by the pain clinic and got a lot of advice on how best to manage my pain including access to a pain psychologist.  This also led to referrals to occupational therapy for an assessment of my sleep positioning, and to physiotherapy for respiratory physio, and hydrotherapy.  I started hydrotherapy a few weeks ago and I've already noticed a huge difference to my pain levels.  In fact I can't remember when I last reached for some ibuprofen!  Obviously it's not a miracle cure, especially as my condition will deteriorate, but it's welcome relief.  Meanwhile, I took it upon myself to ask my doctor to refer me for a genetics assessment.  I last saw a genetic counsellor when I was about 5 if I remember correctly, and I remember her pulling out a massive textbook of various genetic syndromes and disorders and showing my parents and I several diagnoses that I came close to fitting the criteria for but not enough to be diagnosed with it.  One I remember being Silver-Russell Syndrome.  While I've gone this far without an official diagnosis, it has been frustrating to explain to people, including medical professionals the ins and outs of my disabilities with no name for it or them (see I don't even know if all my stuff is connected as one disability, or is a multitude of disabilities!) and it would be nice to have some idea of what I'm dealing with.  Given how technology has developed (the internet wasn't really a thing - or at least not widely used then) and how the global community and information sharing has progressed, I feel like my chances of getting a diagnosis (assuming it is definitely a genetic thing) is markedly higher.  I have an appointment in a few days so here's hoping something positive comes out of that.

The times they are a-changing:
Next week marks my 30th birthday, which I plan to celebrate with as many of my friends and family as possible.  It also marks a big turning point in my life.  I completed my university studies a little over a month ago, with grades I'm very pleased with, and will be graduating next year.  While the idea of doing post-grad study isn't completely out of the question, I'm putting that prospect off for the near future to pursue my career goals, which may or may not involve a drastic move to the capital, some seven hours away from my current home and support network of family and friends.  This is terrifying but exciting, but a lot of forethought and planning is required, and at this stage I'm still open to alternatives, wherever jobs may be.  A major downside of having finished my studies now however, is that I am no longer eligible for funding for a vehicle to transport my electric wheelchair.  At the moment I am limited to a small radius around my house if I want to use my electric wheelchair without relying on a mobility taxi of which service is patchy and expensive - I've not yet been brave enough to try a kneeling bus.  Otherwise I use a manual wheelchair that I need someone else to push for me.  This is less than ideal and kind of gets in the way of me being self-reliant and independent.  But mobility vehicles are extremely expensive...  I think a post about the cost of disability won't be far away.  Once I have a job I'll be eligible for funding again, but having my own transport would help me to get a job in the first place.  It's a fun cycle.  At some point I might consider making a gofundme page for one, this time of year probably isn't ideal though.

That pretty much sums up where I'm at at the moment.  I have a few posts waiting in the wings, follow any of my social media pages for updates.


  1. Glad to hear from you and for the good news with medical stuff! Also, happy birthday :D

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