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Falling apart at the seams

Writing was keeping me sane. I have no mental or emotional spoons left.

I am burning myself up with anger, fear, loneliness and pain. The stress of looking after my daughter, her meltdowns, her physical needs and her normal teenager stuff is draining me so much, on top of the constant fear - what happens when I'm transferred to PIP for DLA. I have lost the capacity to cook, meal plan or budget, and my daughter just burns my overdraft on Amazon as I trusted her with my bank stuff when i was recovering from the flu and having several seizures a day (which seems to be when I lost most of my flist on LJ and my few remaining RL ones...)

Everything has come undone. I'm further on the spectrum than my daughter now, or worse at keeping the flaps and ticks and meltdowns and shutdowns at bay. but no diagnosis, as to do that you go private and out of the county, as their is no budget and no staff. no support for the seizures as they are not epilepsy or stroke, so out of the neurology budget, but not functional as a result of child hood abuse, so not in the remit of psychiatry. they are severe ME/CFS, yes we will acknowledge it causes these symptoms and not in your head, but there is nowhere to go. Drugs for neuro pain and seizures react badly with ME. As does pain relief. I have a care package, £72 a week, and interviewed people, some who seemed promising, but like last time, obviously taking the piss. Agencies come expensive and are no help at all. And it's - you don't need the help coz I can't find it so they want the money back, despite taking £25 of me a month to pay for my 'care' so it goes from one account I can access for everything to another to which I can only use to pay for housework and washing that no one wants to do for £10 an hour all due to the fact my DLA was raised £1 a week... I have a cleaner who is lovely but possibly the most daft and silly person (I don't want to say stupid, as she cleans well) but can't understand instructions that are repeated - I am in the middle of sorting that, leave the piles as they are... don't throw away cardboard or paper if it has something written on it (the Microsoft details of BK's new laptop has gone, and in getting it fixed under guarantee, they locked her out of her documents and I have to pay a hundred bloody quid and she hates me). At least my kitchen and bathroom are clean and not gonna grow germs :)

God, I am such a lonely, pathetic individual, alone and lonely, sick, and all the social skills and all the work in therapy I did, all that hard work in the 90s to deal with a NT world and recover from serious sexual abuse has all come undone and I'm bonkers, totally bonkers.

I just want a hug, but I'm touch phobic due to the abuse and it hurts due to the ME and there is no one out there to hug me anyway and I'm so tired. You know what, this govt are cowards, don't just cut their care and benefits and charities and agencies and care and just round us up and gas us. I'm so fed up with left wing friends on Facebook sharing stuff about Trump and ignoring the systematic and grave (UN words) abuse of human rights of disabled people or European citizens and immigrants or children or grandchildren in their own country!

My phone screen broke. BK tried to fix it. She couldn't. We found one on ebay but it doesn't have internet any more. I can't do touch screens due to spasms and tremors. anyone recommend a keypad internet phone - doesn't have to be smart, getting me on fb and lj and my emails will do!

Moan over... sorry...

Comments

( 5 comments — Leave a comment )
flowerpotgirl
Sep. 11th, 2017 09:42 pm (UTC)
Best I can send is a virtual hug.
🐘🌻🍀🌹📱💐
sysann
Sep. 11th, 2017 10:22 pm (UTC)
*snuggles*
flowerpotgirl
Oct. 7th, 2017 10:27 pm (UTC)
I know, carers are a nightmare, but have you thought about getting someone from an agency for a block of time one or two days each week? You could list what you want done e.g. food preparation, cleaning, washing and a block of time can be more efficient. Even if they don’t get everything done, it may help more than daily carers and you could give yourself the time ‘off’ to rest, write or whatever works for you. May not help but might be worth it.
No idea on phones, I have a Lumia which was £30 on eBay, but it’s a touchscreen keyboard and I don’t use it for the internet. I was lucky to be given a tablet which is easier to use in bed. Christmas present request?
asparagusmama
Oct. 18th, 2017 04:36 pm (UTC)
The thing about agencies is that I get far less care for my direct payment, 2-3 hours a week rather than 6.

Also, one big block a clean, is what this lady is doing. but to cope I need someone almost daily for 30 mins to a hour to pick up the stuff BK leaves on the floor and do the washing up, a long with cleaning up any spills, changing sheets (if accident) and emptying commode (if bad). Of course, I do this, but it takes me all day, leaving me with no spoons to brush teeth, wash, or have chill time, or cook properly... And that is exactly what my Care Plan is for, written in, to help keep house clean and tidy to avoid infections and falls and leave energy for personal care and care of daughter.

I've used agencies three, and you get a different person every time, some who have read what is expected, some who haven't, some who patronise, some tell you that you don't need help, one who stood in my kitchen and told me she had voted BNP while she did my washing up, one who stole my mobile phone but I had no evidence to prove it...

I got the new Nokia 3310 2017, as it gives good 2G with buttons, but the buttons are different to my old phone and spasms are still making me do the wrong thing and writing is a nightmare that leaves me with horrible tremors and shakes beyond the normal. BK needs to buy some special paste and a soldiering iron and maybe able to lift the hardware out and insert into the internet free version we got on Ebay. Fingers crossed :)

We have a tablet, that we share, but I rarely use it since I was playing bounce and with two finger spasms I wiped BK's fic notes and two episodes of Elementary, and I have no idea how!
flowerpotgirl
Oct. 19th, 2017 10:53 am (UTC)
I know, agencies mean erratic times and random carers, hardly ideal. You spend half the day waiting for them to come and hoping it is someone competent. I had one spend the whole time on a rambling tale of her cat rescue work, not actually listening to the human she was being paid to help. And some literally cannot boil an egg - really good when they’re coming to make lunch - especially at 10.30 a.m.!!
( 5 comments — Leave a comment )

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