OS ways and Poor Health

Prinzessilein

Wednesday2000....I would say you have a better than even chance of getting some sort of award for PiP....go for it!...No, it is not stress-free, and filling in the paperwork was a bit tough because it makes you achingly aware of your limitations...but I managed to get through it all (and feel free to find my thread over on disability - pollyanna is right , it is 'my time has finally come' and it tells of my thoughts from receiving the letter telling me to apply, through to getting the final award letter....just ignore the rather obvious thread-diverter!!!)

What if they don't give you an award? Well, you will be no worse off than you are right now! (Maybe a bit tired and stressed, but nothing you won't recover from quickly!)....but if you got even the standard for one component, that is a little over £20 a week...you could get that new bed you said you needed!...That's what the money is for - to help make your life on a par with "normality" (whatever that might be!)

Go for it!

pollyanna_26

Have sent you a pm Wednesday . It's in the lap of the Gods whether you receive it as it's seems a bit hit and miss at the moment .
Interesting to read LL on IBS , I am lucky never to have had it and rarely an upset stomach apart from the years I took Brufen when still working , Never again as ulcers were the result .
DD has had IBS for many years so we are all different .
Night sweats and general overheating or feeling abnormally cold have long featured in both our lives .
I just see fibro as a giant jigsaw will lots of different shapes
If you're asked to describe how you feel it's complicated to explain .
DDs and her doctor constantly do the is it the fibro , arthritis , both or something else ? scenario .
Put is this way things are never boring .
polly

pollyanna_26

Prinzess I was reading your thread again earlier including the diverter .He actually caught me out when I first replied to you over there twice . I hadn't encountered him before but caught on fast . I see he's back suited and booted and already spotted by all .

Hope all is well with you and mum . It's been warm and cloudy here today .
Have you started the shoe boxes yet? I've got some very pretty CCS charts and linen in the stash and hope to make something winterish either a sampler or some smaller hearts or pictures . I do love hearts of all types whether painted wood , stitched or sewn .
That's why I look forward to shorter days and hunkering down . No doubt we'll be moaning then but we'll see .
polly xx

Wednesday2000

Thank you guys for all the info. I will probably read back from the start of the thread when I can.

It's nice that some people on here understand how I feel and have the same problems.

I mean I'm not glad that you have health problems too obviously, just that I feel reassured that I'm not alone in this. I think "hidden" illnesses are especially hard as people just think you are fine. I look perfectly "normal" on the surface, apart from when I have a big red face when I overheat in hot weather.:o:D

I always think the OS part of the forum is the most helpful and friendly part of MSE.xxx:A

Prinzessilein

Yes, I have started the boxes...all the knitting is done (a hat for each of the 4 boxes, and a handbag and pure for each too)...and the usual toothbrushes/paste and soap/face-cloths....and some pens...and some lovely stickers which are actually dress-up dolls!

Mum and I are both ticking along thanks...I had a rough day, but took meds and slept through the worst!

The 'diverter' is getting a tad predictable, I spotted his last incarnation quite quickly....and got the latest after his first post...the story was so familiar, and he has a distinctive style.

I am currently cross-stitching doves for Christmas Cards...a nice activity that can easily be out down and picked up.

caronc

Wednesday, if my experience is anything to go by go for the PIP you never know. Yes the forms are a pain, yes I didn't get the award I thought I qualified for and had to go through the reconsideration process and then an appeal, but I can honestly say that everyone I had deal with with was polite, considerate and I was never made to feel as though I was "at it"! It was worth it I was initially awarded the Standard Rate Care and on appeal got Standard Rate Mobility which is a very helpful £300 per month together. Like folk with fibro I have a hidden & misunderstood condition that fluctuates hugely so if you do apply try to focus on the impact of condition and not the symptoms. If you don't apply you certainly won't get an award so what have you got to lose?

pollyanna_26

The contents of your boxes sound lovely Prinzess It's a pity you can't see the joy of the lucky recipients when they open them .
The diverter would be best ignored but sadly he gives such a false impression of benefits it's bad information for those looking for help

Caronc How are you now ? Any sign at all that the meds are making any difference ?
I agree with the others Wednesday no harm in looking up the pip claim and doing a dry run of noting the descriptors and how they apply to you before making your mind up .
BTW This has been mentioned a few times during the thread .
Arthritis Research UK is an excellent website if you haven't already come across it .
Fibro is one of the many conditions on that site and you can send for booklets on each subject including the proper information on the condition . Day to day management and different helpful ones .

One day I'll learn to do links :rotfl::rotfl::rotfl:

polly

pollyanna_26

I've just come back on to read more slowly through LLs post on Adrenal Glands and for many she is pinpointing an important thing .
Long term illness can have a massive effect on day to day health and normal bodily functioning for many .
I also agree that stress and lack of rest contributes .
I followed her posts over on the widows thread and could see her slowly and carefully identify each impact of caring for her husband and another close family member . She has looked for logical solutions to different things and has also identified the lifting and other areas of a caring for someone which took their toll .
It's a very trite expression which I myself have used to say " Look after yourself " but really who cares for the carer?
There are carers associations but does the carer have time or energy to take advantage of an aromatherapy session ?
I was already diagnosed with Fibro a few years before DD and was obviously living with Psoriatic Arthritis for many years before her diagnosis brought up the genetic link to my mum . We couldn't go back further than there due to lack of records .
So we all have different conditions for different reasons so mutual understanding , researching , support and sharing how we find solutions is why we are here .
Hope all have a restful night
polly x

lessonlearned

Don't get me started!!!

Who cares for the carers indeed......the answer is no one. No one gives a fig. Carers are expendable, they are cheap or often free labour.

Oh yes. Adult Social Services all give lip service to it, they all talk about the need for carers to take breaks, to be partners or spouses, and not just nurses or carers. But it is just that - empty idle talk - and no one offers any real practical solutions. Aromatherapy massages is one of the better suggestions.....but really which carer has the time, the energy or the money, that's assuming they can get someone to look after their loved one whilst they take that much needed break.

Help and support, don't make me laugh. I even had to buy my husbands wheelchairs and stairlift, gadgets and gizmos to try and help him, along with incontinence pads because he didn't qualify.

What?? He ended up paralysed from the neck down but he "didn't qualify".

Carers save the Government and the NHS a small fortune. Oh yes some carers may receive a carers allowance, but many don't.

I gave up my job to care for my husband. Big mistake. It took me 18 months to get him DLA to which he was entitled. As it was i eventually had to haul him before a tribunal, in his wheelchair in which he could barely sit unsupported, before they conceded that yes he was eligible. . Then when he was finally awarded DLA I eventually received the princely sum of £53 per week. Ha!

Same when it came to getting him continuing health care to cover the nursing homes fees when he was completely bedridden, couldn't feed himself, couldnt even turn over by himself. You wouldn't believe the fight I had. It is a patients legal right but you try getting the NHS to assume their fiscal responsibility.

The State takes advantage of carers. They use us as cheap labour. They know that we will never abandon our loved ones so they exploit us, knowing they have us over a barrel.

The most inquitous example of this is children becoming a carer for their parent. How dare they exploit children in this way. It makes my blood boil. They are being robbed of their childhood, and their educational opportunities are wrecked. These young carers lives are ruined before they have even begun. Much good would an aromatherapy massage do to help a child carer whose life and health is being destroyed. .

Sorry for the rant but as you can see this is one subject that is guaranteed to make me see red.

Then when we have wrecked our health and our finances and we eventually have to admit defeat and place our loved one into a nursing home, they withdraw all financial support and leave us high and dry......too sick to work but not deemed sick enough to claim benefits. :mad:

As my dear aunt once said to me "never put your faith in the State, because just when you need it most, it will let you down". Thankfully she did not live to see my husband get sick and witness me having to beg and grovel for help and support. She would have been horrified.

Well the State certainly lets carers down, it chews us up and then spits us out when we are no longer needed.

So when I hear some well meaning but ineffectual social worker pontificating about carers needing to take care of themselves it takes every last vestige of my willpower not to throttle them. :rotfl:

Anyway i shall be awol for a few days, visiting a friend. Hope you all stay well. Keep searching for answers and doing all you can to help yourselves.

pollyanna_26

I agree with all you say but really didn't mean to raise your blood pressure . People need to open their eyes to what is happening with the safety net once paid into and there at the point of need .
I hope you enjoy your break . I'm in too tired to go to bed mode but need to shut down and head upstairs so will wish you a good night .
polly