HAD ENOUGH!

[mub40]

lost another 2 days because of this stupid illness.Paid the price because I decided to do some housework.So the last 2 days have been spent in bed pain awful and fatigue overwhelming.I have had to crawl to the bathroom.I really don't want to live my life this way.

[bbstport]

so sorry to hear you are having a bad time of it. do you use the pacing technique ? it is so important to pace yourself and if you don't you end up in a massive amount of pain and totally zapped.

hugs

Belinda

[mub40 in reply to bbstport]

Yes,I try to pace myself but some days I just push myself that little bit more until I end up I cant stop.Many thanx for your reply sending gentle hugs

[haribo36]

Hi there,that used to be me before I decided to pay someone to do my cleaning.I would suffer so much especially using the Hoover and I even used to force myself to Hoover on my hands and knees every day as I was a perfectionist.Those days are long gone as I learnt the hard way that perfectionism was no longer achievable.I used the money I got from my DLA today for a private cleaner.Now I get help through social services where I have a personal budget to pay for the help I need and that includes someone to clean my home once a week.I still do a bit of hoovering but it hurts me a lot as I find my Hoover very heavy and the movements send my muscles into spasm.Have you considered contacting your local adult social services and asking for an assessment of your needs?Anyone with a disability can do this who struggles with the day to day things xxx

[fibro in reply to haribo36]

I was told by social services that the payment for a personal budget does not include caring for your home only personal care! I guess you live in a different county... Where about are you?

I haven't been able to clean my home in years and my husband works full time, is on his feet all day, then has to cone home to help cook as i cant do that alone. He doesnt have a high salary, in fact its less than it was 15 yrs ago when we moved, so its hard to pay someone more per hour than he gets paid himself! Any DLA i get has to be used for the extra expenses of getting to hospital and GP appointments..

I understand that having a personal budget you have to take on someone as a proper employee, all declared and payments have to go via a separate account. Is this correct?

Thanks xx

[haribo36 in reply to fibro]

Hi fibro,that's not correct what you have been told as keeping your home hygienic and tidy is important to your physical and mental health.As I said this was important to me when I was assessed it was included on my plan of care and as I have difficulties doing it then I needed help.Please ask a different person and try again.I do not manage the personal budget myself as I thought it would be

too much for me so you have the option of another organisation to handle all that for you.I live in the south East Essex area xxx

[fibro in reply to haribo36]

Thanks, thats what i thought. I did mention this but i think they used the fact that my husband could do it! Although he works full time has to help with cooking as well. Im really concerned as i have to use a CPAP machine to breath at night, although it has filters having a dust free bedroom would be a start! I have to have a second hip replacement soon, so will need to get reassessd when i get home.

I did try calling then before xmas but it was like a completely different department, although it wasn't. It was like all shutters went up and they werent going to help. They did say though i can have six weeks care when i come out of hospital! Im going to leave it until then to ask again, but thanks for the advice, and that you dont have to manage the personal budget yourself. I dont think the lady Who came out the year before last made it clear. I think she was just trying to scare me, making it look like you have to do it all yourself. I do wonder though if they think that my OH can do it all was just a way of keeping down their figures.

Im up north, but how strange i were born in Essex,

It's so good this site being able to sare but of info like this as now i have a reference point to go on when i speak with them again.

I cant be doing with the stress at the moment of challenging them, i will wait until I've been in hospital. All i need is a date.

Thanks for your advice, its much appreciated xxx

[haribo36 in reply to fibro]

Your so very welcome! I hope it goes well for you and you get the help you need.Just be firm and say my husband can't do it all as he can't physically do it!xxx

[fibro in reply to haribo36]

Thanks xx (we coukd do with a 'like' button as i wanted you to know i had read your reply xxx

[mub40 in reply to haribo36]

That's just how I vaccum I sit on the floor and shuffle across the floor!I didn't even know about adult social services its something I will have to look into.Many thanx for your reply

[Mrs_Somerset]

think strong, Mub, the bad days can jump on you like an angry bear - weighing you down, stealing your strength and light, biting with pain, but we are here - keep typing at us - we all visit with the angry bear - I am wishing you strength - big hugs.

[mub40 in reply to Mrs_Somerset]

Thank you for your kind words.Your support is gratefully appreciated.Sending gentle hugs

[joed]

hi im feeling the same im so fed up of living with chronic pain wish they cpuld find a cure i look after my 1year old grandson 3 days aweek and im finding it increasingly difficult i suffer me/fm and currently useing patches for the pain but they are not working going to contact gp tomorrow would like a second opinion sorry to offload on you hope things improve for you joanne