I am in my early forties, as is my husband, and we have one six year old. I was diagnosed 16 years ago.
I recently had to make a paper schedule so my husband and son are doing some chores. So today I’m laying on my couch in a house that is filthy and stinks. It drives me crazy.
How is your family adjusting to you losing functionality? Are they helping you?
It is hard when you feel you’re no longer up to speed keeping on top of household tasks. My husband helps out more these days, but there’s a lot of stuff that would never even cross his mind, such as window cleaning, cleaning out the oven or heaven forbid…dusting But on the whole, so long as there are no dirty messes, I have few complaints.
It’s tough when you are unable to keep things up to your accepted standards. I am 77 now and have gone through phases of employing a cleaning company once a month to just managing in different ways. I always manage to clean sink, basins, toilets at least once a day but tidiness has to go. My husband has a clipboard with a list of things for him to do on Fridays and I notice he now finds it easier if things are kept tidier. I have a google smart speaker to remind me which day to change bed, wash towels and cloths etc.
To make things even better, I am refinancing the house to roll in a balloon loan that is about to blow up. The bank is sending an appraiser in for 10-15 minutes inside and 10-15 minutes outside. To take a picture of every single room in the house.
I’ve been doing a crazy amount of work inside and outside. If the house is appraised low, we would need mortgage insurance. The whole point of the refinance is to not have to pay extra each month.
Yesterday I started out the day fine but ended up unable to speak or put on my own pants, even lying down. My husband did my chores and his while yelling and cursing. My son looked disturbed by my state and avoided me.
I don’t like being a problem for my family, and it is so hard to see time running out to get things done while I feel like I’m dragging myself through the desert to do what should be a simple task.
I can empathise, we’re renovating a bungalow and need to move in asap. During previous house moves I’d been able to source fittings etc myself and it saved a lot of friction. But this time I’m totally dependant on my husband to chauffeur me around, he’s still working and can’t really spare the time, so I’m becoming more stressed. There’s a limit to what can be achieved online and it’s very frustrating. We really need to be out of our present accommodation asap…so fingers crossed
The appraiser has come and gone. During the 10 day spruce up, I sprained my wrist tendon, slapped myself in the neck, chest, and stomach with fence pickets or other implements, got a cup-sized purple bruise on my foot from dropping something on it, fell too many times to count, and, the icing on the cake, I developed hemorrhoids from squatting too much one day working on the fence. I did not realize that was even possible.
I did hire a lawn service from all this, which will help a lot. And now I have a wonderfully clean house.
I’m so glad it’s over.
It’s hard when you have to rely on someone else’s standards. It’s hard to let go. Fortunately, I had no choice. I have a cleaning lady who comes every other week. She also changes the bed linens. (I’d do it every week!) I’d give her about a B-/C+, but she’s not me. I also have a driver who takes me grocery shopping and to appointments, and I have a lawn kid who comes every other week. It gets pricey, but I’m lucky that I can handle it so far. As for family, they really have no idea. They try, but they see us how we used to be. I can’t walk on my own, talk, or write well, but they just don’t get it. My sister was getting on my case about being cold and losing weight. I CAN’T HELP IT!! I have CREST syndrome, Ataxia, and Hypothyroidism. She’s much better about things now.