Image description: Red 6 sided dice, at and angle with three sides showing. Each side shows a white question mark. No background to image.
Nine months ago. I was a 31 year old woman, with a successful full time job. I was engaged to the man I wanted to spend the rest of my life with. I was making enough money to live off, and working fast towards ‘pretty comfortable’. I had 4 promotions in 3 years and was about to take nationally recognised industry exams which would have lead to my fifth. I was pretty much there. I had it all figured out. My future was secure. I had ADULTED.
But something was wrong. By November 2016 I had been experiencing 8 months of increasingly worrying symptoms. You can read about my journey from the surfacing of my symptoms to my first diagnosis in my post The Phantom . But to summarise, the things I had been putting down to stress, overwork, failure to eat healthily enough- were getting worse and worse. My work still appeared near flawless, I was hiding it well. But ‘concerned’ discussions were starting to take place about my levels of sick time. Behind the front, my life outside of work had ground to a halt. I was going home, collapsing, had ceased all activities outside of working hours and even though I had managed to hide it, I was increasingly aware my productivity in the workplace had become dangerously limited.
Contrast with now. After finally being signed off work by my Dr for what I hoped would be a few weeks which would just mean I rested and was fine again, a period of time which stretched into months as my health deteriorated, I have finally reached the point where my position at work has been terminated. I have no income as yet, I am at risk of homelessness. The people who were friends, partners, family are now verging on carers.
There are about two hours a day I can think clearly or do anything productive. The rest of my time is spent alone, staring at walls, wondering how this could have happened to me and hoping I can work up the energy, balance and co-ordination to feed myself today.
A walk to the shops can mean up to two days bed-bound. My first diagnosis is under question and I am facing a good 6-8 months of waiting lists and tests to establish what is actually wrong and how to treat me.
I am in pain every minute of every day.
I am at risk of losing my home due to the financial implications of losing my job and having no one who can support me financially while I try to pull what I need together to persuade the powers that be that I cant work or even consistently self care and will need disability benefits to so much as keep a roof over my head and eat for even a few more months.
And unless you know me well. I don’t even look ill.
I am not the only one with this story to tell. Far from it. During the time I have had to fill when I can think I have visited facebook groups and blogs and forums and there are so, so many of us out there. Facing the same challenges, losses, pain and endless financial insecurity.
This is the reason for this blog. The people I want to reach are people like me. People with so much left to do and give. People who have no choice but to keep surviving and want desperately to keep surviving in a meaningful way regardless of their limitations.
With love and solidarity,