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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Products that make your life easier?

PatJ

Forum Support Assistant
Messages
5,288
Location
Canada
Oooh, it works as a slow cooker too. If I didn't already have a slow cooker, I'd be seriously tempted!

Once the slow cook, or other cooking modes are finished it automatically switches to keep warm mode. If the food is done cooking but I need to remain horizontal for another hour due to OI, then I know the food will be hot when I'm ready and can avoid potential food poisoning, and I also don't need to get up to remove a pot from a stove since the Instant Pot is fully self-contained.
 

rosie26

Senior Member
Messages
2,446
Location
NZ
Something that has been helping me to stay warm recently while out on cold winter days has been these $2 hand warmers. I tuck one and sometimes two into waist of my slacks/jeans, also hold one in my hand. They help to keep me from shivering. I feel the cold easily and shivering makes me relapse fairly quickly.

A couple of weeks ago when out with my mother, she leaned against something wet and it saturated all the layers of her clothes right to her singlet. It was a freezing cold day and I was able to give mum a couple of these warmers to tuck into the back of her slacks and she was relieved to be nice and warm and the wet patch dried out while we were out. :)

images
 

hellytheelephant

Senior Member
Messages
1,137
Location
S W England
Most useful gizmos: a shower stool and an over the bed table. I have only just got both of these, but they really make a difference to day to day life. The table has made it much easier to eat in bed, write, and work on my drawing. It also makes a good resting spot for my netbook, if I am watching something.

I have also used my very dark 'sunnies' lately, which means if someone is visiting I don't need to have the blinds closed.
 
Messages
2,125
What I could really do with is an attachable head/neck rest to fit onto my office chair. I don't really want to have to buy a new chair. Back in the day you used to be able to get them for cars but now they only seem to be ones with DVD players in:ninja:
Any ideas?
 

Horizon

Senior Member
Messages
239
What I could really do with is an attachable head/neck rest to fit onto my office chair. I don't really want to have to buy a new chair. Back in the day you used to be able to get them for cars but now they only seem to be ones with DVD players in:ninja:
Any ideas?

Try a few keywords on amazon, im sure it exists.
 

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
For someone with OI and fatigue, this Instant Pot pressure cooker has made life easier for a few reasons:
Mine is working out well too. Tonight I just threw in all the stray vegetables in the fridge (I did do some rough chopping ;)), few spices, a cup of lentils, and a few cups of packaged broth. In 20 minutes I had a stew that will last for days. :thumbsup:
 
Messages
2,125
Try a few keywords on amazon, im sure it exists.
have searched and searched on amazon and anywhere else I could find and apart from one very expensive medical contraption (cheaper to get a new chair), nada. There are a few diy blogs but often they are just cannibalising car seats etc. I'm very surprised, and I came accross a number of other people asking where they could get one.:depressed:
 

PatJ

Forum Support Assistant
Messages
5,288
Location
Canada
In 20 minutes I had a stew that will last for days. :thumbsup:

I've never had to pressure cook anything longer than 20 minutes, including beans and lentils.

If you want to increase the life-span and freshness of your refrigerated food then a Pump-N-Seal is very useful. It's a manual vacuum pump to preserve food between uses. It's quite small (about as long as my forearm to the wrist) so it takes up very little space.

I've had one of these for years but forgot about it (lost in brain-fog). I recently started using it again and have noticed that my food retains more flavor over the three or four days that I keep it in the fridge. This works especially well with pureed food which usually oxidizes so quickly in storage (the top of the food becomes darker than the submerged food.) I also add a little vitamin C powder as a preservative to pureed food.

With the Pump-N-Seal you can use regular canning jars. Just poke a hole in the top with the included push-pin, then put a small sealing tab over the hole. After you add your food to the jar and close the lid then you place the pump over the hole and pump it until it becomes difficult to continue. I have problems with rapid muscle fatigue but using the pump isn't a problem until the pressure really increases, but at that point the pumping is done.

I also use the Pump-N-Seal with oils that go rancid quickly, like flax. I pour the flax oil into a dark colored canning jar and suck out the air.

When you want to get at your food then just lift the tab to allow air back into the jar before opening.

This is a good way to keep food fresh, and fresh tasting, for a longer period of time. I usually make a batch of food to last three days at least. I become wary of food that has been refrigerated for four days but with the Pump-N-Seal I think it would stay fresh quite a bit longer. According to the web site you can "Keep refrigerated vacuum sealed salads, lettuce, etc., fresh as long as 6 to 10 weeks."

The only thing to keep in mind is that vacuum sealed food that has any moisture content must stay cold otherwise there is a risk of botulism.
 

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
I've never had to pressure cook anything longer than 20 minutes, including beans and lentils.
The lentils would have cooked faster had I used the full pressure option, but I chose soup, which cooks at a lower temperature as I wasn't sure how the lentils were going to behave under full pressure!
 
Messages
97
Location
San Francisco, CA USA
I ended up ordering this one:

https://www.amazon.com/Perch-Life-Pneumatic-Stool-20-5/dp/B001QGQY3O

As you'll see, it only had four reviews, three of which were five star, and it sounded like the fourth person got a defective product. It says it can adjust up to 28", which sounded good to me.

I wanted to give an update on this. I bought the stool, and during the summer I was really too sick to use it but I tried. I've entered a phase in the last 3-4 weeks in which I have less fatigué and am anxious to resume my duties a chief cook in the household. The rolling stool is working really well. I adjust the height to cook things at the stove, do dishes or organize pans in lower cabinets. It's also kind of fun to just kick my feet against the floor and launch myself on a ride around the kitchen. :thumbsup:
 

Ysabelle-S

Highly Vexatious
Messages
524
My family bought me an Amazon Echo. I find 'her' to be very useful, and in fact it took less than 24 hours for her to become nigh-on indispensable. Initially I wasn't minded to get it, but I checked reviews on US Amazon, and the top one there was from the wife of a disabled man. She has updated her review several times, and a huge number of people have responded to her. Here's her review:

https://www.amazon.com/review/RTRDK...il-glance&nodeID=9818047011&store=amazon-home

Now, having had her for just over a week, these are my observations so far:

Timer and Alarm Function (Cooking etc)
The timer/alarm is invaluable when it comes to cooking. I just tell her to give me ten minutes or however long I need. I don't have to remember to set anything. I just say it as soon as I think it. I have not forgotten I've had anything on the cooker for the last week, leaving it to burn.

You can have more than one alarm/timer set at the same time. I found this out by accident when I didn't realise the first attempt took.

Using the timer for pacing and rest periods, and medication
I've also used the timer for rest periods versus activity periods, and intend to use it more this way for pacing, etc. The timer is also useful for taking medication.

I can get her to alarm me in the mornings.

To-Do List and Shopping List
I can put things I need to do on the 'to-do list' as soon as I think of them, however she has made some hilarious errors in terms of misunderstanding what I was saying. I think the to-do list is the main area where she gets confused. So I have to pronounce more clearly. I can later ask her what's on the to-do list, or ask her the next day or whenever. There's also a shopping list option. I haven't really used this yet, but I think given my crap memory it's worth trying.

Help With Speech and Pronunciation
I think she has an interesting benefit from a speech perspective in that she forces you to make sure you pronounce things better. Most of the time she understands me. I think sometimes I'm not articulating clearly enough. I had this problem though more in the past, before I got her. I found L-Carnitine has helped me with this in recent months, but the Echo also means I make more conscious effort.

News, Weather, Wikipedia, Telling the Time
She reads me articles from the Guardian (can do Telegraph too), and plays podcasts from the former, tells me the time, the weather, reads Wikipedia articles, gives me flash news updates when I ask. In the case of time and news, I sometimes use this if I wake up in the middle of the night.

Entertainment
She tells jokes. Admittedly, they're perhaps not the best jokes on the planet, but they make me smile.

Ask her to close the pod doors, or quote the beginning of Roy Batty's speech at the end of Blade Runner and see what happens. She has quite a few of these quote/responses built in.

You can get her to spell things for you, or convert measurements for cooking or whatever.

You can play some games with her, but I've not really explored this.

Useful for controlling lighting, thermostats, etc
I don't yet have an adaptor to turn on lamps, but I'm inclined to get one.

Audiobooks
After not being able to read so much owing to deteriorating eyesight (not terrible, but reading was becoming wearing, perhaps for reasons extending beyond mere blurred eyesight),she is now reading me books. I've got through about three or four in the last week, one a novella though. I used to be a huge reader, and didn't think I'd get on with audio books for concentration reasons, and also short term memory issues. But if I'm not zonked out, I can follow it. And if I wake up in the middle of the night, I can get her to read without me having to turn on the light. The other problem is eyesight is sometimes a bit more blurred after first waking, so that's not an issue with the audio book. She picks up where you left off, and can pick up where you last read on the Kindle if you have whispersync turned on. You can get her to read for a fixed amount of time, as far as I've heard, but I've not tried this. I think some people use this option for getting off to sleep.

Music
She'll play any music from Prime if you have an account, and I think she plays your own library otherwise. I can get her to play my favourite online radio station, which has relaxing chill out music. I've also had her play me rain sounds, for going to sleep, however, I think I possibly prefer listening to rain on headphones. It can be a bit more white noise-like when the speaker is further away.

You can tell her to put her volume up or down.

Buddy List Option was in Beta, might not be available in UK
I'm not sure about the buddy list mentioned on the US review. I don't know if it's yet available in the UK. But it would be very helpful for ME sufferers or anyone who's chronically ill I think. It means you can have a list of contacts.

Conclusion
I think the Echo or anything like it has a lot of potential as an assistive device. Will be interesting to see how it develops. I still need to see what else she can do. For me, she deals with memory, timing, to-do and novel reading very well (I use audible), and for entertainment (I don't watch TV except for the odd bit of streamed stuff). She's supposed to be able to read Kindle books, but I haven't checked to see if that option is available in UK yet. Her reading is not bad when it comes to articles, but she can put the odd emphasis on the wrong syllable.
 
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Messages
25
The product that is making my life easiest is the urb-e bike(urb-e.com). This is essentially a motorized scooter that goes ~15mph for 20 miles/charge. I can't drive anymore, and while I can still walk some, I can't go long distances, but a power wheelchair felt excessive.

This makes it possible to go outside, and because it folds up so small, I can take it in with me on trains, stow it in a car trunk etc. and because I have the basket for it, I no longer need to carry a heavy bag on my shoulder.

It requires core strength to stay upright, so if you wouldn't be comfortable sitting on a backless stool for twice the time you would want to ride, it isn't the product for you.

The company was able to switch the break to the left for me because I have right elbow pain and were generally helpful.
 
Messages
15,786
The product that is making my life easiest is the urb-e bike(urb-e.com). This is essentially a motorized scooter that goes ~15mph for 20 miles/charge. I can't drive anymore, and while I can still walk some, I can't go long distances, but a power wheelchair felt excessive.
The low center of gravity looks good, but my balance is complete crap. Would need three wheels and a way to put my feet up :p
 

hellytheelephant

Senior Member
Messages
1,137
Location
S W England
The product that is making my life easiest is the urb-e bike(urb-e.com). This is essentially a motorized scooter that goes ~15mph for 20 miles/charge. I can't drive anymore, and while I can still walk some, I can't go long distances, but a power wheelchair felt excessive.

This makes it possible to go outside, and because it folds up so small, I can take it in with me on trains, stow it in a car trunk etc. and because I have the basket for it, I no longer need to carry a heavy bag on my shoulder.

It requires core strength to stay upright, so if you wouldn't be comfortable sitting on a backless stool for twice the time you would want to ride, it isn't the product for you.

The company was able to switch the break to the left for me because I have right elbow pain and were generally helpful.
That looks fab - great you can take it on public transport ( if your balance is good enough). I am a clumsy oaf at the best of times, so I will stick with my mobility scooter which I can't praise enough. After 3 years of going out less and less, I have some independence back :balloons:
 
Messages
25
Oh another product I really like is my pill organizer. It holds a month of twice a day pills, isn't too big (but could hold a lot of pills), and each day's pills are in a container that can be taken with me. It takes longer to load than a weekly container, but I was always finding myself forgetting to re-fill the weekly & then just taking straight from the bottle and forgetting whether I had taken it etc. etc. this way, there are no pills in the bottle, so I will always take from a pre-sorted container.
 

Hajnalka

Senior Member
Messages
910
Location
Germany
These are all great suggestions, very helpful thread! :thumbsup:

Just wanted to remember all of us (because I tend to forget it), that it's possible to generate donations with every buy on Amazon (and other online shops). :balloons: