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Caring for POTS while working - Carers UK Forum

Caring for POTS while working

A place for those 18-35 to chat about all things caring.

I (26M) met my fiance Jane (27F) in college 10 years ago. Her health got worse throughout university but we both graduated 5 years ago. I now work a really good design engineering job where I am away from home around 1 night per week. Jane hasn't worked since graduating (Physics if your interested).

She has been told she has POTS, ME, EDS, basically all the 'we dont really know how to cure you' conditions. She is now on a few hardcore drugs that keep her condition stable but suffers with lack of energy, blackouts and brainfog. She can look after herself for a day but rarely leaves the house without me. Her concentration and brainfog means reading more than a sentence is hard and forgets what she is saying mid sentence. This makes any work near impossible. She also broke her foot a year ago, got infected, operation, and is really struggling with mobility. Dispite this her outlook is always bright and she is an awesome and strong (mentally), happy person. She has pip but not the advanced mobility because it was assessed before the toe problems. She refuses to go through pip assessment again because she hates to admit the extent of her condition to anyone and it really effected her mentally last time.

I am her only support (families are not nearby) and provide all the financial, physical and emotional support I can muster. I run our house (cook, clean, garden) help her with paperwork and help her shower, get dressed, fetch things ect. I try to find time for myself when I can but am struggling with the balance of working, caring and living. I am supporting both of us, with a mortgage, on my salary so dont have the spare cash to pay people to help.

Is there any support you guys can suggest? Or any advice you would give? Would be much appreciated!
Hi CandC.

Given the circumstances as so described , options are somewhat limited.

Three links follow which will be assistance ... two for support , one financial :

Needs assessment ( Through your LA ) :

https://www.nhs.uk/conditions/social-ca ... ssessment/

Carer assessment ( Not claiming Carers Allowance NOT a barrier ) :

https://www.independentage.org/informat ... assessment

Online benefits calculator ... for that financial m.o.t. ... all benefits currently being claimed ?


Enough from me , others will be along to extend their welcomes ... pretty quiet on here as I type.