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Fibromyalgia Action UK
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Things just get harder!!

Hi hope everyone is enjoying the sunshine and keeping warm.... My week turned into a nightmare ...OH went into respite ....I had to get cover for me ..ie dress, wash,etc as I cannot do a lot for myself.

My daughter came to stay at night to lift my heavy horrible legs into bed.....then a carer came about 10am to help me wash and dress...then daughter took over aft on first day....then my Mum who is 87 today ! got rushed into hospital with heart attach.........Kelly and I ended up there till 11 pm....Next day my carer had a car accident so could not come . Kelly was at work,came home at lunchtime to dress me....Then she had to go as moving into a new house in the week!! We rushed to the hospital that night with Mum in Resus.......Both Kelly and I worn out....We went over last night and she is much better,and coming home as it is her Birthday today......

Today Kelly is at work all day...my other carer never showed and I am on my own!!! Can't dress etc and Mum is home on other side of the town,waiting for me to go for her birthday but no lift. don't know how to put my scooter tog so cant go by taxi :-(

In amongst this I had to go to hospital in another town to where Mum was to see about Lymph drainage....It has sure been a busy old week......I am exhausted in lots of pain and still got 11 days to go before OH is due home....

Sorry to go on again but my wall is fed up with me talking to it! lol

Rainbow hugs to everyone ((((((((((((((((((((((((( :-) ))))))))))))))))))))))))))

12 Replies

Blimey sounds like you are having a bad time.

Rainbow hugs to you too :)


Thanks ;-) Yes I am and it has been going on for ages..My OH has ptsd so he has to go into respite 3 times a year but the council just don't get anything sorted. They say I have an alert button and if I press it someone will come within the hour if I fall ! Not really the answer tho: :-( And I cant press it to get me washed and sressed either lol x x ((((( ;-) )))))


My Mum has an alert button but when she fell at home she was told " i hope that doesn't happen again " ! she pays every month to have this service, unfortunately i wasn't there when the council employee turned up and wasn't told til days later. I think i should have made a complaint

Her carers don't turn up sometimes and the first the company know about it is when clients phone in to complain, one night it was 10 45 when someone came


So glad you mum recovered quickly ... Hope she has a lovely birthday and I am sure she will understand if you can't get there today.......

VG x


I will get there some when as she is very confused at times and will not understand......She is a very strong lady....she was given 3/5 days to live two years ago next week !!!

RD x :-)


Sending you warm hugs and super strength.


Thanks x x x


Hugs. I hope things improve for you soon


Get onto council as this is a poor service. If they dont give you what you need ask to be put through to the customer relations team to make a complaint.

I would never leave one of my customers like this and I am shocked fellow social workers have. Hopefully if you start the complaints process, they should then instigate a better service, but you shouldn't have to do it. I know we are trying to make less go further but that does not mean leaving others without basic care.

Let me know if I can be of further assistance.


Thanks Jon , all they do is say we can have half hour to get me up half hr for my lunch, (if I buy a microwave ) Half hr either to go to bed or have my tea not both ! We said no thankyou as I am safer in bed when no one is here ,but when I get out of bed I cant get get back in. If they came to put me to bed at 9 oclock I would have to get up in the night as I cant go that long on my side,and I will need the loo.

My husband is in combat stress on respite for two weeks and they are disgusted and going to write a report to the Social service ,My Dr and anyone else who have let us down x+

Thanks for your help in this everything gets harder,I was told to do hydrotherapy by one specialist and the physio. The the Lymph glands nurse said I have to keep leg bandages on for 4 weeks then they will fit another support but I will have to wear it at all times even in bed. She said it will be very painful but to up my meds. It was meds that caused me most of my problems I seem to be over sensitive.

Sorry to waffle on and thanks again -


That's no problem. Right gloves out time. I get 45 mins in the morning for showe, breakfast and dressed and I can on the whole manage to get out of bed. I also have 30 mins tea and bed.

Is there anyone that you know that you can employ. If so, ask for a direct payment. You can use this direct payment for any care that maybe involved and if you need to can bank some up for when your husband is in respite or ill or just shattered. If you can't employ anyone you could also sort your own agency care.

I bank some of mine up for if my daughter or mum, who lives round the corner are away. I also use it if in a flare, so when I am good only have 2 calls.

This way you could at times when needed like this have 4 hour calls a day.

Personalisation, which is government led directive means that people like us get to choose the type of care that we need and when we need it. This means that your local authority are going against this directive.

You need a full re assessment of needs and ensure that your husband says he doesn't want to do as much. This will bring your budget up for your care.

It annoys me so much, you can probably tell, that your husband like millions of others save the government millions a year by providing assistance. If they all went on strike tomorrow, the country would be at a standstill. I don't want your husband like many others ending in carer breakdown as he is too scared to leave you again.

Ask for another social worker too.

If you need me for anything message me, I somewhat feel determined to get you the care you deserve and need.

Take care.

Jo x


Thanks again jon,we were told about we asked for a direct payment and they would only pay for this two weeks of my OH being ill himself and in respite .For 24 hr care they said it would cost £5000 as I am not safe on my own at all, I need over night care and daily care too. They refused it saying If I could not get into bed and my legs up I could sleep in my chair.

I checked aroungd and one lady said she could cover me all night from 10pm till 8am for £500 as a good will gesture and my other carer quoted me £10 an hr for days my daughter was working. So got total down to around £1500 they still said no then offered me £480:90 for the two weeks and that was all so I have to pay the difference. As my OH is medically retired and gets DLA I am having to pay it out of his DLA as mine pays for the car.

I have already had 2 falls this last 5 days at one time waiting for nearly two hours to get help from ambulance crew. I stumble a lot due to my vertigo problems.

Getting weaker by the day.

Again Jon thanks for all your help. will message you when I get any news

Rainbow Dancer x x x


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