It’s an utterly debilitating condition. It’s not good for anyone’s physical and mental health to have to lie flat in bed all day. And yet some people are left that way, long term, because Doctors don’t know what to do with them. They don’t understand how to treat them.
It’s now over seven years since I got ill.
Seven years… it’s such a long time right?
I never imagined seven years ago the way our lives would be so altered in one day.
My new video diaries YouTube project to educate and raise awareness about arachnoiditis and spinal CSF leaks
So the never-ending battle continues but 2020 brought new gains that I never imagined could come without more invasive procedures. That experience this year has been something of a miracle in our lives.
‘Could I have Chronic Arachnoiditis?’
Where do I start on the whirlwind of the past month or so? A couple of months ago I had only ever vaguely heard of something called arachnoiditis. And to be honest I was at a stage where I was far too weary for much new medical research. But that word ‘arachnoiditis’ kept coming back up, it kept being thrust back into my view – however much I tried to avoid and run away from it.
How it Feels To Have a Spinal CSF leak. Please note these symptoms are there every day without fail. This pattern is consistent each and every day.
Five Years ago this week…
I fell from a small step ladder.
Five years ago this week – my life took a dramatically different turn.
Five years ago this week – I got sick and have never fully recovered.
Eighteen months since my fourth high volume lumbar epidural blood patch seemingly sealed my leak, I am still not back to where I was before my accident in January 2015.
My head, spine and nervous system still do not operate as they once did.
Month by month I see more of the new ‘old me’ being restored.
The pathway of recovery, after a long term spinal fluid leak, is often a very long, arduous and immensely slow process. Even after successful treatment.
UPDATE: Please note that in August 2020 I was also diagnosed with arachnoiditis as well as a spinal CSF Leak – I now have radiological evidence to support both those diagnosis. To read more about the new diagnosis please see this link. Our greatest glory is not in never falling, but in rising every time … Continue reading Finding A Way Through: My Spinal CSF Leak Recovery