just saying….: Just reflecting; by the... - Multiple System A...

Multiple System Atrophy Trust

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just saying….

esj20 profile image
6 Replies

Just reflecting; by the time I get up, breakfast, washed and dressed I’ve just used up 2 and a half to 3 hours of my life that I won’t get back!

Time flys with MSA, doesn’t it! 😬😬😬🤔😡

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esj20 profile image
esj20
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6 Replies
Monkeyfeet1 profile image
Monkeyfeet1

my most hated time of the day! Xx

calebsmum profile image
calebsmum

Oh gosh don’t I know it!!!! I start my husband’s routine every day at 6 am with syringes of medication into his feeding tube, and we usually have him in his chair around 9. Then the night time routine takes 2 hours as well as care during the day. And the government think my care has a value of less than £2 an hour for the first 35 hours a week and the other 100+ hours care a week I do for love only. But if I was doing the same things for someone else, I would get £20 an hour.

rideabike profile image
rideabike

Ya but because you’re all dressed and now no one has to say “Don’t look Ethel”! Just think of what you’re doing for us all…. 😁😃 🧔‍♂️👶🧑‍🦳👩‍🦰

In the UK did you hear that silly song? My mother cracked up everytime it came on and had us all laughing. (Ray Steven’s “The Streak” 1974) Probably before your time. ( Check out YouTube) Hope your days are tolerable but a laugh never hurts.

rideabike profile image
rideabike

youtu.be/bxUfg3uCBbg?si=ToT...

“The Streak”

mandg profile image
mandg

Yes you think now, " what a pain" but Oh how I wish I was still doing it for my husband. 😢

Ruthi15 profile image
Ruthi15 in reply tomandg

Me as well what I would give to still be worrying but to still have him to talk to and tell him how much I love him just coming up 3 years my life is very very hard now

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