Useful gadgets that make life easier for MEcfs patients and carers

[Ysabelle-S]

Have you bought something - whether a device or other product - which has helped you in some way as an ME patient? There are obvious things like pill cutters or heart rate monitors, but there might also be other things that help with household tasks or day to day chores. Or even with symptoms - noise cancellation headphones, for example.

If you've found some really useful items, feel free to tell other patients about them here.

 

[Valentijn]

Wheelchair - no more death marches or making myself sick standing around too long.

Mobility scooter - I can go do fun stuff when I'm feeling well enough

Shower chair - helps keep my heart rate down, especially if I have one leg propped up

Heart rate monitor - water resistant, so very useful for showering

Robot vacuum - I just have to get a couple things off the floor, then off he goes

Pulse oximeter - easier to spot-check than a heart rate monitor, plus can see what makes my oxygen saturation drop

Lactate meter - helpful in correlating symptoms with high lactic acid in my blood

Food processor - I get to do the fun part, then leave it for the fiance to clean

 

[Trish]

Two things that have helped me significantly:

Two wedge shaped pillows sold for people with acid reflux so you can sleep with the top half of the body on a slope.

I bought these a year ago after diagnosis with a hiatus hernia and acid reflux. I sleep with one, and use both during the day when resting.

A surprising side effect(?) or at least coincidence is that is has improved my POTS symptoms and even more surprising, has completely stopped the irregular heartbeats that I had become increasingly aware of over the last few years. I speculate that it's related to increased blood volume, but have no evidence to substantiate this. And it helps but has not eliminated the reflux.

The second item is a hospital style bed tray on casters with a metal frame so it arches over the bed with casters on the floor (it's a single bed). The centre section has a very good mechanism that is easy to adjust the slope. I am currently lying in bed with my two sloping pillows and my laptop on this tilted part of the tray. I can lie here typing, reading stuff and watching TV on my laptop in comfort with everything at the correct angle.

 

[Ysabelle-S]

Two things that have helped me significantly:

Two wedge shaped pillows sold for people with acid reflux so you can sleep with the top half of the body on a slope.

I bought these a year ago after diagnosis with a hiatus hernia and acid reflux. I sleep with one, and use both during the day when resting.

A surprising side effect(?) or at least coincidence is that is has improved my POTS symptoms and even more surprising, has completely stopped the irregular heartbeats that I had become increasingly aware of over the last few years. I speculate that it's related to increased blood volume, but have no evidence to substantiate this. And it helps but has not eliminated the reflux.

Ah, so that's why my gran, who had a hiatus hernia, had one of those pillows. Never gave it any thought.

I have the top of my bed on blocks because of something I read online about orthostatic issues.

Not these links, but they are on the same topic:

http://inclinedbedtherapy.com/forum...ion-treatment-with-head-end-of-the-bed-raised

http://www.newcastle-hospitals.org....t-and-medication_orthostatic-hypotension.aspx

I've looked at those tables you mentioned before. They look really useful.

 

[Ysabelle-S]

Robot vacuum - I just have to get a couple things off the floor, then off he goes

Pulse oximeter - easier to spot-check than a heart rate monitor, plus can see what makes my oxygen saturation drop

I'd love a robot vacuum cleaner.

I had one of those pulse oximeters, but it stopped working after about a day, so I sent it back. That was a few years ago. Never got a replacement.

 

[Allele]

I have several of the handy items mentioned here (boy would I love a mobility scooter!)

One of my faves that hasn't been mentioned yet is this grabby stick for reaching things without overdoing:
http://tinyurl.com/ycs33w4t

So helfpul! It can pick up anything from heavy wet laundry from the washer, a glass from a high shelf, or even a pushpin. I feel like a fabulous android when I use it. Could double as a way to totally freak out your cats.

Also, true blackout curtains. Essential for sleeping past the crack of dawn and for migraine/photosensitive days.

Shaggy sheepskin pelt, makes any sitting/lying place so much more comfy and cozy.

Looking forward to hearing everyone's gadgets/items--I got my grabber on another patient's recommendation and it's been a lifesaver. It's great to share in the wisdom of experience.

 

[Sean]

Shaggy sheepskin pelt, makes any sitting/lying place so much more comfy and cozy.

Highly recommend a thick, good quality lambswool topper for your bed, and main chair if you want too. Not cheap, but worth every penny, much better than foam toppers, IMHO.

 

[arewenearlythereyet]

I use one of these collapsing trolleys for in the car ...good for loading and unloading and to pull along rather than stuff things into a shoulder bag. (I'm mild moderate) this is useful for work...I can hide this away quite easily when not in use.

 

[Sasha]

I posted this on another thread but perhaps it's also relevant here:

Many people have problems swallowing large tablets and capsules.

As far as capsules go, it's possible to buy empty gelatin capsules on Ebay, Amazon, etc. so that you can open your own large capsules and decant the contents into them and swallow several small capsules instead of one big one.

The smallest size is #4 (then #3, #2, etc.)

You can buy a gadget to help you fill many at once (and it's a fiddly job so if you do it much, it will be worth it). I'm buying one made by Cap-m-quik. Be sure to buy the one for the size of your capsules.

Hope that helps somebody!

 

[Luther Blissett]

One of the little things that I've been very happy with is an OXO Good Grip Magnetic Can Opener.

It locks into place, so you don't need to keep squeezing the handles while operating, the knob is big and easy to grip, it cuts the top off leaving the rounded edges, so less sharp bits, the magnet grips the lid, so no need to handle it, and most importantly, it has never failed to work.

It was recommended as good for people with arthritic hands and a poor grip, I can't speak to that factor, but it definitely needs less muscle power to use. Even works on buckled cans.

Another thing that helps in the kitchen is a slow cooker, and if you can get one with an electronic timer, this saves having to inspect if ready, and the forgotten something is cooking scenario.

 

[Sean]

It was recommended as good for people with arthritic hands and a poor grip, I can't speak to that factor,

I can. I am getting normal age related osteoarthritis in my hands, mainly my thumbs so far. Means I can't grab objects tightly for very long anymore.

So will be looking at things like electric tin openers in the not too distant future.

 

[Sean]

Many people have problems swallowing large tablets and capsules.

As far as capsules go, it's possible to buy empty gelatin capsules on Ebay, Amazon, etc.

Worth noting that you can get two different types of capsules, plain (non-coated) and enteric (coated). It matters because some medicines need to get past the stomach acid and into the intestine before they should be released. Otherwise their effectiveness is reduced by the acid. The enteric capsules are used for those meds.

Quite a few standard prescription meds are in an enteric form.

 

[Allele]

@Trish, were your wedge pillows smelly when you first got them? This is an increasingly problematic issue for me with new things, and foam seems to be one of the worst perpetrators. I think most foam is drenched in fire retardant these days. If you found one that is not, I'd love to know!

 

[Wonko]

Okay.....

Microwave - gets used several times a week, without it my batch cook, freezer method wouldn't work and I'd be forced to eat more junk food.

Slow cooker - I have 2, at times these are both in use, for months, and at others they aren't used for ages (edit - heavy and difficult to manipulate while cleaning) - it depends on what I'm cooking/eating at that time.

Freezer - obvious really but without it batch cooking would be pointless, and I'd have to cook each meal, each time.

Food mixer - I used this extensively for years, using it to take the hard work out of mixing bread dough, make cakes, scones and other baked goods, it even makes sausages (to much work/cleanup IMO), pates, and ice cream.

edit/insert - food processor - for slicing, shredding, making pastes, oddly it's better than my food mixer for making most types of pastry. Whilst useful, for some tasks, it rarely gets used coz it's a pain to clean, for most stuff it's easier to buy pre chopped/sliced veg.

Hand mixer whirly thing - mashes potatoes, whisks (tho not very well - good enough for whipped cream if you're into that sort of thing) and acts as an easy to use in pan liquidiser.

Sofa legs - I bought some 6 inch legs to raise my sofa another 5 inches, coz I couldn't get out of it, they help, quite a bit, and they also made the un-hoover-able zone next to the sofa move to under the sofa.

Overbed table - very useful, I currently use mine in the living room as a coffee table replacement that can swing, and tilt, so when I want to get up it will just swing out of the way, and there is nothing fowling my feet or to hit my shins on.

Tablet - multiple uses, no good as a main pc but for some things, like taking a recipe in the kitchen, banking, reading a book, or ordering a takeaway.....

NAS - I'm fundamentally a very bad person - my NAS holds around 12TB of films, tv series, ebooks, and controls my tv tuners etc. - all of which can be accessed wirelessly from anywhere in my home, and as I found out recently, within about 50m of it.

Washer/dryers - brilliant devices, at times, if you can get them to work.

Backpack - don't know about anyone else. but carrier bags, ow, and a pain in the butt if you use crutches.

Little plastic food containers - make freezing food much less messy

Pyrex cookware with lids - I have loads, useful for, say, making half a dozen smaller shepherd's pies/ macaroni cheeses etc. all but one of which can just be lidded and frozen once cooled.

Probably a lot more.....but I'm fed up with typing and you're probably fed up with reading.....

 

[Valentijn]

Sofa legs - I bought some 6 inch legs to raise my sofa another 5 inches, coz I couldn't get out of it, they help, quite a bit, and they also made the un-hoover-able zone next to the sofa move to under the sofa.

Ours were about 6cm, and we had to raise them to 10cm to accommodate the robo-vac (we call it Dalek, because of the noises it makes). Luckily our other furniture already had a nice gap.

Tablet - multiple uses, no good as a main pc but for some things, like taking a recipe in the kitchen, banking, reading a book, or ordering a takeaway.....

I got one a couple months ago, and love it. We got a wireless keyboard to go with it, so I can use it on the couch in front of the TV after my PC gets moved into the office area.

NAS - I'm fundamentally a very bad person - my NAS holds around 12TB of films, tv series, ebooks, and controls my tv tuners etc. - all of which can be accessed wirelessly from anywhere in my home, and as I found out recently, within about 50m of it.

You're a good person, just in the wrong country It's not illegal to download in the Netherlands, and we pay an extra tax on storage media to supposedly compensate the film industry for having their stuff ripped off.

Pyrex cookware with lids - I have loads, useful for, say, making half a dozen smaller shepherd's pies/ macaroni cheeses etc. all but one of which can just be lidded and frozen once cooled.

I use those too (Ikea?), mostly for leftovers. But they're nice sizes for baking various dishes if I ever get the urge.

 

[Trish]

@Trish, were your wedge pillows smelly when you first got them? This is an increasingly problematic issue for me with new things, and foam seems to be one of the worst perpetrators. I think most foam is drenched in fire retardant these days. If you found one that is not, I'd love to know!

Yes, every foam product we buy has to sit in the garage unwrapped for several weeks until I can't smell it any more! Then I seem to be OK, though of course I can't know what damage it might be doing to me.

But I'm also allergic to most natural stuffing like feathers and kapok, which both give me asthma, so in the end I opt for synthetic. I guess cotton wadding might be OK, but I've never seen pillows made of this and it would be very heavy.

 

[Ysabelle-S]

I'm so used to my laptop for everything, that I wasn't sure how I'd get on with a tablet, however I got an Amazon Fire 7 this week. Haven't really had a chance to try it out because I get a terrible wireless reception in the bedroom. I'm going to have to do something about that. I run my laptop off an ethernet cable.

I will post on the benefits of the Alexa device at some point, but I think there's been new stuff there I haven't checked out yet. I also think there's an Alexa app on the Fire tablet. There's certainly one on my Fire stick. In one year I've ended up with remote assistants around the house that can technically turn lights on and off and do other things, though I've not used them for this.

 

[Wonko]

@Ysabelle-S
You can buy plug in wireless boosters (that plug into a mains socket) to sort out that problem.

The main reason I said above that a tablet was no good as a computer replacement is down to the screen size, most sites, most forums, need to run at a resolution that makes the text too small for me to see without effort, if at all. Some places allow the site to run zoomed, or increase the text size, but that causes layout, navigation problems or simply scroll fatigue.

In my case it's just too much work for it to be worthwhile, especially given I could simply place a laptop on an overbed table and have a big enough screen.

I own 3 tablets, an 8 inch FS, a 9 inch FS (largely retired due to battery life issues) and a 10 inch WS. I have a case with keyboard for the 10", the only one I can occasionally use for forums is the 10 inch and that's too heavy for job

...and yes I should have mentioned remote control sockets above - very useful for things like my boiled egg cooker, which, like all of them, doesn't turn itself off when finished, just beeps, loudly and possibly forever, plug it into a remote control socket, when it beeps just push a button on the remote from the sofa and it shuts the hell up, it's off, and when I remember about the eggs later......

 

[Adrian]

Ah, so that's why my gran, who had a hiatus hernia, had one of those pillows. Never gave it any thought.

We have an electric bed that will sit you up or/and lift your feet up for that reason but it is quite good for sitting up in bed.

 

[Ysabelle-S]

@Ysabelle-S
You can buy plug in wireless boosters (that plug into a mains socket) to sort out that problem.

I had one of those, but it had some kind of fault. Most people seemed to be okay with that model, but there were consistent reports from some buyers of the signal dropping. So I kept getting cut off. Need to get another one.

I love my Alexa - tells me the weather, the time in the middle of the night, reads me the news, and at least a couple of newspapers, plays radio and music from Amazon, reads my Audible books, tells me jokes, allows me to set timers for cooking, etc. I can ask it to Wiki things for me. Great if you're lying in bed and you don't want to get up to do stuff. Or if you wake up in the middle of the night and can't get back to sleep.

I think technological convergence is one of the best things, because now we can get so many devices in one, and they're smaller and lighter than twenty or thirty years ago.