“It’s good to talk” BT told us in the 90’s. Of course they just wanted us to use the now virtually defunct landlines more and generate lots of lovely profit for them. The iconic phrase has now been adopted by Counsellors and Psychotherapists to encourage participation in mental health programmes. A little deep for this, I just heard the phrase followed by the suggestion I start blogging, and it fired up a spark that had died down to glowing coals in the back of my mind.
I often share the trials and tribulations that my life has become on social media, and I often wonder if my audience cares to hear it. Of course some will be happy to read my moans, the odd elation, and the general mundane goings on in the small little world I’ve come to live in, but for those that don’t, I figured if I tidied it all up into one place, I could talk a little more, and my audience could read as little, or as much as they’d like.
So, here we are. Post number 1. The introduction.
I’ll keep the background as concise as possible, I have a tendency to ramble, and as my keyboard doesn’t have the ability to interrupt me, I shall have to learn to self moderate!
A few years ago I started to develop ‘odd’ symptoms. I was falling over, losing sensation in my limbs and suffering from what presented as strokes, but were merely a funny kind of migraine. (Trust my Peripheral Nervous System to be melodramatic 😑). After a multitude of tests and a couple of specialists, I was eventually diagnosed with Functional Neurological Disorder. The short version being that my nervous system being compared to a computer with a software glitch, the hardware was fine, but the messages weren’t getting through. After starting off with one walking stick, I had progressed to two Fischer sticks, then to my fabulous purple crutches, all the time using a loaned wheelchair for longer trips (thank you Charlotte!).
By early 2016 I was really struggling, I could barely walk, and my Doctor’s referral for my own chair had been turned down because I didn’t use it indoors. I didn’t use it indoors because I couldn’t fit it inside my flat, and I was just sat on the list for accessible housing going nowhere fast. Talk about catch 22! Then in February, my luck changed. I fell in my friend’s bathroom and broke my pelvis. Not many would consider that lucky, but it triggered a chain of events that got me the help I needed. The hospital sent some carers out who could see how much I was struggling, referred me for a wheelchair again, got me a social worker, and assessed my needs, things were starting to move. My social worker got on to the council and bumped me to the top of the list, I was approved for an active user chair (crip speak for lightweight and designed for me to get around unaided) and things were looking up.
April 2016, true to form, it all went wrong. I got ill, then I got ill again, and again, and again, and…you get the picture. I kept getting sick, and the medically people didn’t know why. They ran test after test, decided I was crazy at one point (not a high point in my life), admitted me and sent me home a few times amidst a pissing contest between hospital consultants and my GP over where I should be and how ill I was. By this point I was so weak I couldn’t get from bed to bathroom, and after my 4th discharge, the suggested solution was a commode in my friend’s living room with me sleeping on the sofa. The NHS at it’s finest there. Eventually one hospital doctor saw sense, and admitted me again and was going to find out what was wrong. It was Epstein Barr, a virus that’s detected via a simple blood test. By this point I’d been ill for 4 months. (You’ll just have to picture the resting bitch face that comes whenever I recall this particular episode).
So, with me so weak from 4 months of nastiness, unable to walk and therefore unable to go home, they had to decide what to do with me, no fully adapted homes were available, but No 1 priority was being able to get to the bathroom in my chair. The solution? Sheltered Accommodation for old folk. (I should probably point out I’m only 32!). I wasn’t overly keen, but I was too ill to protest, and there was nothing to protest anyway. I couldn’t go home.
That was 9 months ago, and I’m still here, with no sign of any adapted properties coming up. I have some irons in the fire with that one, but that’s for another post.
It’s taken me some time to finish this introduction, my illness seems to get in the way of a lot of things, but I intend to post as often as I can!