Still no help and feeling desperate n... - Fibromyalgia Acti...

Fibromyalgia Action UK

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Still no help and feeling desperate now!!

rainbowdancer profile image
10 Replies

Hi just thought I would update everyone on the on going saga. Well nothing has happened at all....no Social services, no physio, no Adult care in the community !!!!!!!!!!

I have got a lot worse this week ( didn't think It could get worse) I have now picked up a nasty virus prob; from being at my daughters wedding,as my immune system is shot to pieces! I have a really bad cough causing me to have muscle cramps and spasm's.A mouth full of ulcers and I am very,very tired :-(

We have also decided to take out a loan and get a disabled bathroom fitted as the council said it would be at least a year or 18 months to get a wet room done! :-( When the surveyer came out he said the bathroom was too small for a wet room so we would have waited all that time for nothing!!!! On the up side my bathroom will be finished by end of August it takes 5 days and is booked for 19th so that cheered me up. :-)

I just wish all the other problems I have could be sorted,as I am slowly sinking into a black hole! I just think if they don't soon help me it will be too late and I don't want to live like this for the next 20 or so years.....because it won't kill me but they could have helped last July when I realised I could not move my leg.....and have not been able to ever since !!

Sorry to go o but it really gets me mad, we have paid all our working life to be able to claim help but we get none yet a person I know who never paid a stamp or worked,now gets all the help they need,a full pension which she claims on her ex husbands stamps,and a bungalow pain by the state,because she lost her house through not paying her mortgage! (even tho the council were paying her the mortgage!! )

Oooops sorry but just had to get that off my chest.....

I do hope everyone is as well as can be expected x

Rainbow love and Light (((((((((((((((((((( ;-) )))))))))))))))))))))))))))

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rainbowdancer
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10 Replies

Hello Rainbowdancer

I am so sorry you are feeling so distressed as are many on here are too, as you can see by the messages.It can be difficult living with Fibro and we all understand that and we are very willing to listen to hopefully be able to offer or point you in the direction for some help.

If you are feeling extremely low and experiencing any worrying thoughts please make an urgent appointment with your GP for help during this acute phase or alternatively visit the local A&E.

As others have mentioned the Samaritans can be a way to express your feelings that may be of help as always someone on the end of the phone to listen. Please consider taking to them Phere are the contact details for them

Samaritans

08457 90 90 90

jo@samaritans.org

samaritans.org

Please know we are always here to listen here on the community forum and the Samaritans are a phone call away too. We are all thinking of you.

And really if you know someone is abusing the benefit system you should think about reporting them .. After all our benefits they are taking

VG x

rainbowdancer profile image
rainbowdancer in reply to

Thanks VG am OK most of the time but wouldn't call the Samaritans as don't want anymore stress on my OH he has enough with his own probs without me worrying him more x x

Angeldancea812 profile image
Angeldancea812

I am getting the same response. 6 weeks ago I contacted Adult Health and I am on a waiting list, which I had to phone them again to discover, of course it's the summer so who knows when they might be in touch again.

Your council are much better than mine at wet rooms though. I had to wait 3 year for what I had been told was urgent as it affects health and safety. When I queried this later I was told it was about average!

rainbowdancer profile image
rainbowdancer in reply to Angeldancea812

It's not funny is it ?

hamble99b profile image
hamble99b

might be worth ringing the social services in case they've lost your file.

try to protect things with dust-sheets as the dust gets everywhere :)

sandra.

suffolklass profile image
suffolklass

Hi Rainbowdancer.

It is frustrating when things take so long and it looks as if others get everything. Try not to think about them, concentrate on you. You're taking control of things and that's good, it will make life better for you - and, once it's done, one less stress for you and a positive step forward.

Stay strong.

Is

X

rainbowdancer profile image
rainbowdancer

Thank you all for your support in this. Yes we are doing it ourselves but had to take out a 7 grand loan to do it,plus still paying for my stair lift................Now we owe 13 grand we never owed yesterday. So much for help eh! when you need it. Been without a shower for 8 months now! Roll on end of August x

Rainbow x

RIBBONPINK profile image
RIBBONPINK

I HAVE GOT ONE OF THOSE AUTOMATIC BATH SEATS I COULD NOT MANAGE WITH OUT IT, I NEED A STAIR LIFT CANT COPE WITH STAIRS VERY WELL THEY COST A FORTUNE.EVENTUALLY WILL HAVE TO GET RECONDITIONED ONE WILL BE CHEAPER.

rainbowdancer profile image
rainbowdancer in reply to RIBBONPINK

Hi we got ours from Acorn and the guy said because we are still relatively young I am 64 that they could do a deal of a new one at a recon price,because a recon; would prob cost more in the long run. Their aftercare was amazing too. It was about 2 grand we got it on a 0% card for some and paid dep our self. But if you ask the Social services depending on your income they might help.( before you buy one as after they won't help ) I just could not get up at all one day and we the rep and 4 days later it was in, took the guy 2 hrs ....I have never looked back :-)

RIBBONPINK profile image
RIBBONPINK in reply to rainbowdancer

THANKYOU RAINBOWDANCER THAT GIVES ME MORE CONFIDENCE FOR FUTURE PURCHASE MUCH APPRECIATED XPINKRIBBONS

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