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#do not lose hope

I know life can be rough and people can be down right nasty, sometimes, but please #do not lose hope. There are people, in this world who still care and are nice. I know. I have met some amazing and wonderful people, online recently. They are very positive and life changing. I love them a lot.


#mental health #do I really care?

Hello everyone. I'm still housebound,and feeling very isolated from the outside world. It's affecting my mental health and I don't know what to do. Even my eating habits are very poor even though I'm diabetic and taking insulin I've been eating lots of sweet sugary food and I don't feel guilty about it until after when I feel sick then I am very critical of myself and I have found myself talking out loud, even though I live alone. I don't care whether or not I will die, and I've now been diagnosed with diabetes neuropathy in my legs and arms. Why do I do this to myself when I try my hardest to keep myself going ?

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#do you see it?

I looked into the window of a public historical building in a park. When I saw what was in the building I took this creepy shot and took off screaming...


What can my Circle Do To Help Me?

One of the EDS group Victims asked this question, and my mind ran with it.!

Hope there are some things here that might help you, too.
For Children and Family:.
- Make a list of chores you need help with, and let them choose which ones they want to be responsible for. (trade if needed)
The list could have things like:
-Start the Laundry,
Put clothes in dryer
-Fold the clothes
-bring you the mail and papers
-put the sorted mail away for you, (make folders for bills)
-Bring you some tea, Run you a bath
-pick out a movie or story to share
-be responsible for feeding, and playing, and cleaning up after pets. (And themselves). Like doing the Cat box, (w/mask), and sweeping up spilled litter, picking up dog mess, into bags, cleaning pet dishes, feeding, playing, etc.
(My kids had some really great bonding when they took our dog for a walk!)
-fix simple, healthy snacks or meals for themselves, and for you
-put on play acts or toy shows to lift your spirits
-bring you a garden flower in a cup
-(send them on scavenger Hunts that you plan. Hide the secrets when you feel good.)
-have them clean special or seasonal things, like stair rails, baseboards, cabinets, the porch, sweeping, lint roller for pet hair, vacuum for older kids
- sweeping the garage
-help you change your sheets, and towels, clean sinks and tub/shower, (I do my own toilet!)
Encourage them!
-make nice, not cut-throat contests for them, out of cleaning their rooms, have them send you photos of their work
(Make up a reward structure, like stickers, tokens, future activities)
-washing windows, cleaning the bathroom, dusting
- have them show you their schoolwork, reading, art, or interests, even if you're in bed.
(pick a time for each kid, to give them 1 on 1)
-have them help you clean your room! they can dust, clean, sort laundry, hang or fold clothes
-have them color a picture, or write a story, for you.
-Explain to them, that may look healthy on the outside, that your insides are very, very tired. They are your super-Heroes!! Show your love and Gratitude.💜🤗

Adults, Spouse, Friends:
-organize a shift/days or weeks, for some pot luck dinners , that will come from your friends, family, or church. Tell them what the family can eat, and what you, zebra, can't. (Many times you can take the ingredients from a casserole, minus the sauce, cheese, etc. and put in a separate container for you!)

(Could be once a month, or during treatments, operations, much needed breaks)
-Ask them to watch a movie, have some tea and yummy stuff, (or nachos and margherita's, lol)
-#do a craft together
-*Go with you to a Drs appointment*.
-Help you get more organized
-shop online together
-enjoy scented candles or oils
-smoke one(lol)

Well, you get the idea!! I'm not getting any of this, so I made a list of things I# miss.
...Others, feel free to add on! # #FamilyHelpMeEDS


Covid shots😷 #do #or not to do

I was just wandering your feelings about having a Cronic condition, will getting the shot do us more harm as the shot was made so quickly ?? #Hope that makes sense #bad flare all week long #just can’t get any sicker