Pssssst! I'm home! *looks around furtively*
We haggled ;) Lovely consultant agreed to a kind of in-patient-at-home arrangement where he will order all the tests I need as urgent, and I will schlep up and down the M11 to get them done.
I know it sounds fairly bonkers, but of all the options available - abandoning poor little broken 3 year old, pushing Dave further into a stress frenzy, squatting in the middle of my Mother-In-Law's life, crumbling under the horror of an in-patient stay etc it was my "preferred option" and Addenbrookes are my "preferred provider." (See what I did there Mr Lansley!!)
The utterly unstoppable Kaliya Franklin folded her indomitable arms (no doubt popping a few joints as she did so) and squared up to Social Services on my behalf. Apparently they weren't mean at all and didn't laugh at her. They phoned back within the hour and a nice lady is going to go through all the options for some support with me today.
Finally, my Mother folded her equally indomitable arms and will be terrifying GPs and dentists all around Sussex once surgeries open. I'd stay indoors if I were you.
Soooo, as usual we have "a plan" or at least a "plan for a plan."
I started writing my blog because I thought that by telling my story, day in, day out, it would give a picture of life with a "fluctuating condition". My life has been a fairly constant basket case for as long as I can remember. You're not just ill - if only!! Noooo, the being ill bit means that everything else in your life is affected. Your finances, your time, your partner and family. I'm sure it can't just be me. Dave and I just sort of lurch from one crisis to the next, trying to manage everything as best we can.
My Dad is 89 and has Parkinson's. Dad's get old. They just do. He needs a lot of care now and has his own crises every month or so - midnight ambulances, pneumonia over Xmas.
But I'm still ill. So then there are two crises to deal with.
We had to move in November. Tenancies expire, they just do.
But I'm still ill. So then there are three crises to deal with.
Dave suffers from depression. He's a carer, he's exhausted, it'd be a miracle if he didn't have depression.
But I'm still ill. So then there are four crises to deal with.
Little one smashed his arm last week. Toddlers hurl themselves off things, they just do.
But I'm still ill. So then there are 5 crises to deal with......
You get the idea. And I KNOW many of you reading this will have lives that are just the same. Because the illness part makes everything else a much bigger crisis.
I write my blog to show my life, but by doing that, it's so that I can show YOUR lives. You know what we don't say often enough? In our quest to be reasonable and convincing and rational?
IT'S BLOODY HARD!
You need endless positivity to be ill. Endless resilience. You have days where gritting your teeth against the pain or fear just isn't enough. In quiet, desperate, exhausted moments where it seems there is nowhere to turn, no answers, we all crumble. Just getting out of bed can be a major task with an endless string of tasks stretching on towards the horizon.
So, to all the wonderful people who wanted so much to give me money yesterday, to help me out of a fix and make things just a bit easier "Thank you" (If you didn't see the comments on the articles yesterday, do read them. I promise it will restore your faith in human nature http://diaryofabenefitscrounger.blogspot.com/2012/02/reality-of-disability-denial.html )
But this is just my life. If you all give me money you can't afford, (yes, I know some of you were fibbing outrageously when you said it was fine) you'd be paying for me until the kids leave home!!
Nope, other options must be found. I will just have to get my head down, look at our budget and make some big decisions. If I can't earn money now, after the year I just had, the trolls really would have cause to criticise wouldn't they? You'll see, I have no advertising on my site and I always declined any offers from organisations to fund me. Who could I take money from that wouldn't compromise the campaigning I do?
But now, with the bill practically law, I'll just have to find someone who wants to pay me for all this work I've been doing for free. I'm not quite sure who yet, but "something will come up"
Of course, there's still the illness. Always the illness. So it has to be something I can do when I like. It has to pay enough that Dave and I don't miss the tiny support left that we do still get, but that ought to be possible - after all, I'm practically running the DWP already and Dunky-Smith earns a huge wedge ;)
So when I write about my life, I'm always hoping that I'm writing about writing about our lives. I don't need sympathy or glory, I don't need any more help than I always need. I don't want you incredible people to hurt for me I want you to be heard. Hurt for your own losses, your own crises - believe me, I know that they take up most of your strength, every day. Mine are just another story, another life, another utter failure of the system.
It's that failure I want to expose - for all of us. Enough is enough. By telling the world how the state and the systems and the structures fail me I am simply showing how they fail us all.
**By the way, later I will put up another post outlining what the Research Fund was spent on and how much is left. I've been meaning to for weeks. As the fund still looks as though it has £6,000 in it (It definitely doesn't, lol) I'd better lay out how the money was spent.