Hi, my name is Chris. I currently care for my partner who suffers from EDS. I heard about carersuk from Facebook. Just here for advice really as it’s not always given by professional’s. Anyways hope everyone is doing as well as possible and take care.
Hi Chris and welcome
What is EDS and what help /support do you need first?
Hi Chris and welcome,
I must admit I had to google that one, please forgive my ignorance. From a very quick read of a site I picked up that depending on the particular variety of EDS, there are methods of coping and life strategies. How is your partner managing the condition and what are you, as the carer, finding the hardest to cope with? Is there an ongoing plan or are you both taking it day by day?
I’m not going to be much help to you as it’s completely outside my experience, but if you care to provide a few more details there are many carers on here who
‘wear different T-shirts’ to the one I had.
We are just taking things day by day, mostly because it was a late diagnosis my partner was living a fairly normal life, and have had a lot of catching up to do, as like most people we hadn’t heard of EDS. I think we’re managing ok but it seems to be house work I have trouble keeping on top of a bit silly I know but when She’s ‘flaring’ the last thing she wants to see is a mess.
If there’s only one of a couple who can do housework, then it’s NOT fair for the other person to do the work of two!
It needs you both to sit down together and work out
Jobs that could be avoided - e.g. ironing by getting non iron clothes and a tumble dryer to blow away the creases
Jobs that can be done by a “mechanical slave” i.e. dishwasher
Jobs that need to be done by “someone” but not neccessarily you - get a cleaner instead.
Streamlining the house will help, if you have lots of stuff. Get rid of everything you don’t need any more, old papers, books, clothes that don’t fit etc.etc.
If you have a garden, flatten the borders, put in a patio, and get a gardener.