During all the years of learning to live with this disease, I've often wished there were a resource out there that provided tips on all the different aspects of how to live with it. My learning has all been so piecemeal and slow and on-going. Reading different things in different places. Being forced to come up with new ways of doing things. Little brain waves. Suggestions from astute friends.
Have thought of writing 'the definitive' survival book myself and using it as a fund-raising tool somehow, but of course, trying to get dressed everyday, keep myself fed and have more than one shower a week, let alone maintain my key relationships, hasn't left much time or brain for that.
There are lots of great tips on the forum here. I thought it might work to compile tips here for now. I think it would be so useful for newcomers. And maybe someday we could do some fund-raising with it..... or not.
Here are a few random tips:
I usually cook 'big' so that the food can last for a few days. Then I can eat it for a few days straight, and freeze some in meal-sized portions whenever I have the energy over the next few days.
I keep a 2 big bowls on the kitchen counter so that as I prepare food, compost goes in one and garbage goes in the other. That way I only have to walk the few feet to put these things in their place once at the end of cooking. The 3rd bowl, recycle, has a place of honour behind where I prep.I only have to empty it into the blue box a few times a week.
I use an exercise ball for when I can sit up to use my computer. I figure the micromovements help keep my strength and flexibility.
On lying-down days, l do about 5 seconds of exercise at a time - a leg lift, an arms raised, a crunch and hold..... And spread them throughout the day.
On days I can move around the house a bit, I try to build my 'exercise' into my daily tasks if there's extra energy for that. When going through a doorway, I do a few doorway psuh-ups. When emptying the dishwasher, I do deep-knee bends as I collect plateware from the bottom shelf.
I keep a list on the fridge and write down what I need next shop as I realize it. Important ones are *ed so that if I'm too tired or foggy to shop long, I only get the necessaries. When going for a big shop, I sometimes rewrite the list in the order of where things are in my grocery store.
While shopping, I only get what I've written down. I don't look at other items or go through unneeded aisles as that is all too energy wasting.
I plan outings for when there is the least traffic.
I got one of those plastic bed protectors to save my mattress from all the nightsweats.
When talking with people, I last longer if I'm flat. Friends got me a folding gravity chair that goes flat to use in places there is no couch.
Have thought of writing 'the definitive' survival book myself and using it as a fund-raising tool somehow, but of course, trying to get dressed everyday, keep myself fed and have more than one shower a week, let alone maintain my key relationships, hasn't left much time or brain for that.
There are lots of great tips on the forum here. I thought it might work to compile tips here for now. I think it would be so useful for newcomers. And maybe someday we could do some fund-raising with it..... or not.
Here are a few random tips:
I usually cook 'big' so that the food can last for a few days. Then I can eat it for a few days straight, and freeze some in meal-sized portions whenever I have the energy over the next few days.
I keep a 2 big bowls on the kitchen counter so that as I prepare food, compost goes in one and garbage goes in the other. That way I only have to walk the few feet to put these things in their place once at the end of cooking. The 3rd bowl, recycle, has a place of honour behind where I prep.I only have to empty it into the blue box a few times a week.
I use an exercise ball for when I can sit up to use my computer. I figure the micromovements help keep my strength and flexibility.
On lying-down days, l do about 5 seconds of exercise at a time - a leg lift, an arms raised, a crunch and hold..... And spread them throughout the day.
On days I can move around the house a bit, I try to build my 'exercise' into my daily tasks if there's extra energy for that. When going through a doorway, I do a few doorway psuh-ups. When emptying the dishwasher, I do deep-knee bends as I collect plateware from the bottom shelf.
I keep a list on the fridge and write down what I need next shop as I realize it. Important ones are *ed so that if I'm too tired or foggy to shop long, I only get the necessaries. When going for a big shop, I sometimes rewrite the list in the order of where things are in my grocery store.
While shopping, I only get what I've written down. I don't look at other items or go through unneeded aisles as that is all too energy wasting.
I plan outings for when there is the least traffic.
I got one of those plastic bed protectors to save my mattress from all the nightsweats.
When talking with people, I last longer if I'm flat. Friends got me a folding gravity chair that goes flat to use in places there is no couch.