ME - aids and adaptations?

Ames

Hi all,

I'm throwing out my OH/carer, and so need help from somewhere else. I have ME and bipolar. Social services don't offer help, just put you in touch with private companies that you pay yourself. My GP has agreed to refer me to an OT, and I wondered what kinds of aids and adaptations are out there?

I really struggle with cooking - I get a lot of pain in my hands so can't chop/peel/stir/lift heavy pans etc. Also, with my twitching and shaking I risk burning myself using the oven. Also doing the washing up.

I struggle to shower, although I've just bought a plastic patio chair and that's making it easier. I still find it hard to lift my arms up to wash my hair though.

Basic housework I struggle with, the only option I can see there is paying for a carer.

Putting clothes out to dry is really tiring, and hurts my arms.

I somtimes struggle with getting dressed due to fatigue and concentration problems.

I think that's most of it, so if anyone knows of gadgets to help with them that'd be great, or if anyone has anything I haven't thought of that makes a difference.

cheers!

LittleMsMandy

Hi , when the OT visits he/she will assess your needs which is really quite an individual thing as each person is different re their special needs ,so to speak. Some items which they can provide are raised toilet seats , grab rails , bath seats ,hoists,high backed chairs and you can buy special tin openers (electric ones) which are great if you struggle with opening tins. As for the actual prepapring of food ,do you get the low rate of DLA ?which is for helping with the costs of having someone do this for you .You may also be entitled to homecare services /a home help via the social work department although it may be cheaper to pay someone privately to help with housework ,etc : OT,s are very good all round with giving advice and of course supplying adaptations although they too have to work within a budget but their work is fantastic . Best of luck with the visit and be sure to ask about anything you,re not sure of :0)

Shiny.Side.Up

Also, go and have a chat with your GP and/or citizens advice. In many local areas there are little known charities that help with mobility and household aids. When my mother had her knee replaced, The Deepings Mens Club (not just for me!!) leant her a scooter, a bath lift, 4 grab rails, a toilet frame, a 'leaning' stool and helped her with her blue badge application. We never knew about them until her doctor suggested him! Everything was leant for 3 months, and some things were extended to 6 and we could have had them for longer. They never asked for a penny, but we did donate to them.

Ames

Thanks for that.

I get the higher rate of DLA care, but I don't know where I could go to pay someone to prepare food for me? I just buy ready prepared as much as I can.

I'm not entitled to homecare services. I had an assessment for direct payments but then I had to leave uni. They said as I didn't need to go out I didn't need to get washed and dressed. Social services wont assess me, so I can't get any help that has to be done through them.

I just wondered if there were gadgets I didn't know about, like to make cutting veg easier? My flat's already adapted so the big stuff is done, although I need some more grab rails.

daska

Why don't you need to go out? Who decided this? And why won't Social Services assess you?

Ames

Social services decided I didn't need to go out, as I wasn't going to uni I had no reason that I had to go out.

Their reasons for not assessing me:

I should eat takeaway every night, therefore don't need help with cooking and shopping.

My dad should cook for me and bring it over, even though he lives 70 miles away.

At the time I wasn't on bipolar medication on the advice of my psychiatirst, and they said I had to take it so that the ME wouldn't be as big a problem.

I should move back to Scarborough so my family can care for me (I had an abusive childhood)

They don't offer help with cooking, cleaning, washing or dressing, so there's no need for an assessment as they can't help with my needs anyway.

Paparika

I've had to contact ss today for help, (fibromyalgia) same problems as you, yes the lady i spoke to was extremely helpful, although my circumstances may be different to you

I am a single mum my son is 14 so there are a few things i couldn't ask him to help me with, i live in council property (a maisonette in a block of flats) lots of stairs when the lift is out.

just self refered to a OT and saw her yesterday, she is a fibro sufferer the same as me and that made things so much easier as she knew my limitations although she said that i was worse than her, she is arranging for me to have a wheelchair so that i can go out although i need to be pushed, and gave me info on charites in my area that would give me money to by a motorised wheelchair this woman was lovely, not patronising or anything, but i think that was due to her knowing exacly what i go through each day

Ames

I hope my OT turns out to be as good as yours!

daska

And what about your right to integrate with your local community, have a social life etc? Whether you 'have' to go out is not the issue - you are not being detained at her majesties pleasure so you should be enabled to go out if you are unable to manage this on your own.

Disni

i have something similar to ms so same symptoms as op.
i complained to my council yesterday as i live in a block of flats and not only are all the disabled bays always full but the whole carpark also which gives me a long walk from the car to the block everytime i do a school run.

i was told its the councils responcibility 2 my housing needs not anything once im outside doors.

i did explain this would leave me housebound but she still couldnt help - hope you do better

Ames

Hmm, well I know round here some bits are council (highways) responsibility, some are housing. It depends who owns the car park. In theory if it's a tower block then it's housing responsibility, or at least round here it is. Who did you speak to in housing? I know round here environmental problems, including car parking, are the responsibility of housing. I'm surprised that she couldn't put you in touch with the right department!

It's probably worth speaking to your local councillor, s/he'll have the clout with both housing and highways.

I know what you mean about a long walk, my car park is so far away most of the time I can't get to my car. There's on street parking at the back, but when I parked there my car was keyed, and the second time a woman who lives on the other side of the road gave me a mouthful for parking there.