asparagusmama (asparagusmama) wrote,

Chaos and emptiness and the loss of hope

So, my daughter is at my Mum's and I'm supposed to rest and chill but I seem to have forgotten how...

I'm supposed to tidy and sort so I can think in this mess but I have a brain full of fried porridge and it hurts to think and reason.
Access denied. Access denied.

What do you mean you have degrees, logic, a photographic memory?

Not anymore, you have a neurological illness, misunderstood and denied, eating your mind!

Or, I've simply forgotten how to pace, that the reason I avoided the interent and stopped writing fanfic was to be able to cope with severe ME and running a home and being a mother. but that's twelve years ago and I never imagined I would still be needing to pick up, sort out and tidy up after someone like they were still a toddler. 20 months ago I had a brilliant carer, two brilliant carers, but one got sick herself and one went off to study and, hey ho...

What to do? What to do? Too mentally exhausted to write my fics, too physically exhausted to tidy or cook scrummy, yummy gf/df meals for the freezer and forgotten what I like on watch or read. Feel fainly guilty enjoying something that my daughter doesn't like/disapproves of and even worse to watch something she does. I watch Lewis with her every night, why do I need to watch it again? I could watch Coraline, which scares her to pieces, or read a favouite from childhood.

Instead, I'm feeling sorry for myself. Everything used to be easier to cope with, the pain, the fatigue, the loneliness, the lack of understanding from those around.

I think it's the lack of hope. My daughter will always need an exhausting level of support, she won't fly the nest, my ME will not go away, the other symptoms are what I fear they are and I can't do that whole drug and surgery thing, I have ME and a daughter to care for...

And in the meantime this blasted Con-Dem govt cuts and cuts and attacks and attacks and this old blue Tory coucil cuts and cuts and cuts and the Daily Mail and all the eveil Murdock tabloids along with the Torygraph attack the sick and ill and sidabled as if we chose to live in poverty, begging for scraps of help and aid, when we have degrees and qualifications and could be owning our own homes and working and sending our autistic daughters to private schools where they would get the support they need.

ME is not understood by ATOS and everyone is being reassessed and I am scared. I stop and I am confused and brain fried and scared, and yet when she is here, I'm not coping. We need proper help in homecare and routines and we are left for her to get anxious and me to fall into despair so I rely on my Mum who makes my feel a failure for being ill.

I don't want to be this ill. Especially the mental exhaustions and confusions. And I don't want my house to look like an explosion in a pre-school next door to a clothes store either.

I really need a decent carer.
Tags: allergies, anxiety, autism, disability rights, emptiness, help, hopelessness, lewis, me/cfs
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