Fibromyalgia Action UK
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Carers help

Carers help

I have to pay a cleaner £10.00 per hour as I can't keep up with the housework I do have voluntary dog walkers now previously I was also spending £10.00 per dog walker the Cinnamon Trust have been wonderful I like to walk my dog when I'm able Tuesdays

& Thursdays I have walkers the other days I cover I live in Sheltered Housing huge communal gardens but dogs must be on a lead I have a extended lead. I throw a toy he does his toilet needs I have a plastic grabber for dog pooh so I don't have to bend down I'm also left side paralysed having to appeal again for PIP I had 0 pts mobility

after my mobility appeal went in the reduced my daily enhanced back to standard I also have a atonic bladder which means 30% of stale urine stays in the bladder so each night before bed I have to selfcathertisebut I'm having difficulties doing so which then leads to a water infection I have kidney disease so each time I have a water infection its also damaging the kidneys it doesn't help that I;m allergic to so many antibiotics I was alright on penicillin based antibiotic but now allergic to that as well. I'm also epileptic now fribromyalgia thrown at me another disability. I'm now seperated from my Husband he has dementia I was carer for him he was carer for me, I have no-one originally when first separated a care plan was put together by my social worker originally it was £40.00 per week 7 hours of which 2 hours was shopping then the care plan was increased to £98.00 per week £8.75 per hour she would change the bedding & if enough time & my kitchen was very well cleaned she would batch cook pasta meals I have swallowing problems I've had a endoscopy to rule out any cancer growth they did find a hiatus hernia doubled my dose of omeprazole which had done the trick but for 2 days before my barium swallowing test I wasn't to take omeprazole or gaviscon it was bad feeling strangled. I also realised that a medication off counter really helped the chronic tiredness but gave me heartburn so I've had to stop taking that swapped to seven seas complete multivitamins with Energy Release Complex think its working I belong on Facebook to a Chronic pain & fribromyalgia group one of the member has been trialling a cbdoil with a higher% with the whole of the hemp & cannabis can't remember the name & I'm having problems logging onto Facebook its a closed group ok just found it Bannisters Super Green CBD oil it can be vape or just oil drops its quite expensive but anything which helps fribromyalgia is worth every penny she is less irritable more like herself again its a great group I've learnt so much I'm also trying another alternative magnesium in the group is often mentioned as helping I'm now taking a product called Osteocare Original with Calcium magnesium vitamin d, Zinc I've also stopped taking DULOXETINE 30mg twice a day last week was chaos I had a kitchen refit yes its nice to have a new kitchen this time with integrated oven so I don't need to bend down my husband usually took anything hot out of the oven my left paralysed hand now has some function but inside a padded oven glove not sensitive I trained a brain cell to recognise my left arm last week with kitchen fitters in the weather was good I decided to plant up the patio walking a long way to dump compost neighbours telling me we thought you were ill I said yes I am not so bad today plus if I don't do it no one else will. I have to push myself I also painted the fencing I had one morning of Chronic tiredness all of that & keeping my dog under control had anyone told me that I could achieve so much in one week I would have laughed for me the switch to alternative medication has worked better than prescribed medication I do take prescribed pain killers my next action plan which has previously helped is reflexology I had what the Neuro Consultant thought was sympathetic pain syndrome each evening was like incredible Hulk man my paralysed hand would swell go very red really painful on a par as with Fribromyalgia the worse thing I find is having to cancel MEETsocial group as I'm lonely but I don't have transport so I'm only able to join events within a taxi ride mobility I get £22.00 per week for taxi I don't have a bus route nearby I can't walk very far bot for paralysed leg & Asthma or COPD 18 months still not decided which one it is now Hay fever is also belittling distance I can walk I take my inhaler now as only 10minutes walking dog I had to turn around & come back I can normally manage getting to the school that day stopped at a quarter of the distance PIP told me I don't have problems in communication so I can plan a journey but the anxiety of doing so plus I need a taxi to get to coach station & back yes I can get a bus pass I have a blue badge if someone is taking me somewhere my mobility car which had no ending date for renewal as obviously when your paralysed its for life as it is for Fribromyalgia

I've a huge bundle of disabilities not recognised as regarding my position with PIP 2 points for mobility & you need 8pts. I've been advised by others who have gone to Tribunal thats the next direction required all this & arranging Divorce proceedings on grounds of Domestic abuse of 11 years not just Dementia having just put this in black & white. I realise although I would like another relationship with my health problems I have nothing to give. I only married for the 2nd time in mid 50's thinking of having a husband to grow old together now I'm stranded totally isolated in Sheltered housing most residents as we call it we are in God's waiting room I'm the youngest at 64

2 Replies

oh dear you have been through the mill Lindy, got to say though you dont look 64, but as i say it's not my face that's Ill, lol, best wishes and take care

1 like

Hi sorry to hear this is a mess you do need expert advice .there are also a lot of bad advisers out there .have you tryed wellfair rights through the social work and see if you can go to tribunals .next step .it is vital because of your age .there is evidence this is a tactic to get people off pip nearer retirement age .as you would get pip for life you cannot get pip after retirment age.if all else failes get supporting evidence you cannot walk 20 metres from 3 different health professions and 3 different helpers and carers and put in for change of circumstances.time is vital .it is terrible this nasty nasty systems and it also about times people get representatives to represent also refusing in some areas .take care it is a libertyeven try MP .try wellfair rights hope you can get help with all your disabilitys takeCare


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