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For all you guys who missed my presence - I'm off line trying to detox my mind and body to have mental, emotional and physical spoons to cope with the changes to Oxfordshire Social Care which will see them taking my entire DLA out of my account to put back in another account I can only access to pay for care I have been unable to find enough off and appropriate enough to risk all the money to pay for gluten free, dairy free, nut free, coconut free, additive, artificial sweetener and stevia free easy food and ready meals and takeaways, allergy safe cleaning products, disposable wipes and plates and cutlery when really, unimaginably bad, plus all the embarrassing incontinence stuff and other unquantifiable costs when every day to day living activity comes at cost and pain and exhaustion; another incapacity assessement with the DWP over my ESA to keep me in the support group while my own GP is still on maternity leave (the one I just spoke to was a cow and wanted to write about anxiety - I'm justifiable anxious, but I also can lie for up to 3 hours waiting to be able to move to do a wee, or I have an accident and lie in it, and I dream, of being able to brush my teeth daily, and I'm lucky to bath every other week and wash my hair once a month); plus still waiting for the mandatory reassessment on BK's PIP; the huge debt I'm in plus being a supportive mummy for BK as she begins this BTEC in performing arts and magicking magic money to pay for all the support she will need that the PIP should pay for (her entire left arm is a overlapping pattern of score marks due to the self harm following the loss of her PIP and means to pay her therapist, still, could be worse, she could be classically head banging, and after 3 TBIs causing the vertigo and balance issues, that doesn't bear thinking about!). If I get taken out of the support group we are screwed, probably homeless, possibly dead. It is happening to far too many people in Oxford anyway.

I won't give IDS and his successors the satisfaction, although quite frankly, I wish I was dead. But that's the thing about severe ME isn't it, it leaves you in the situation people with AIDS, cancer, MS, Parkinsons etc are at the end of their lives day in day out - so said many a scientist who researches the little understood hell my body has.

Anyway, missing from here, dealing with shit, not dead, not suicidal, wishing for an end of live with a nasty illness is not the same as suicidal.

Cards in snailmail appreiciated


( 4 comments — Leave a comment )
Sep. 3rd, 2018 09:27 pm (UTC)
*suggles* Just letting you know that I'm thinking of you and sending good thoughts and prayers your way. I really, really hope things will work out, but I can see how it all feels too much at the moment. :( *strokes hair* I hope you can come back soon to tell us how you're doing, but take as much time as you need. Your health and mental spoons definitely come first.
Sep. 11th, 2018 04:42 pm (UTC)
Thank you *holds tightly for a moment*

It's such a struggle for us both at the moment. Someone shared on my wall on facebook all the reasons to hold on when suicidal, and number one was someone cares, and it is hard to remind myself that, but I have met such wonderfully supportive people like you over the past few years, even if I never meet you, or even know where you are, you care, even if no one nearby does, and that really is something to cling too.

I have got one thing of all that is hanging over me done, so yay for that at least. No I can not think about it until I get called into a medical, even though I did get a good GP letter to say I couldn't, or they make a decision. I will not worry until I have to!
Sep. 11th, 2018 07:00 pm (UTC)
Well I definitely care, sweetie. And I'm sure your other friends here (and on facebook) do too, even if life keeps some of us away at times. As far as people near you go - your mother and brother care. They might not always manage to be helpful, but they do care.

That's a very good start. One thing at a time sometimes is the only way to go. And you're right that there's no point in worrying about it while you cannot do anything about it. Try to be kind to yourself for now if there's nothing you can really do to prepare for any next steps to be taken.

Sep. 6th, 2018 05:47 pm (UTC)
Do I have your snail mail addy? Actually, even if I do, please PM it to me.
( 4 comments — Leave a comment )



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