Simple Helps

[Rachel]

I've recently learned a couple of new helpful tips from DINET members, tips that make life with dysautonomia just a little easier. I have recently learned...

from Sophia: Wear earplugs during travel (or any noisy place) to cut down on sensory overload.

from jhjd: Wear fingerless gloves while typing in the winter to keep your hands from freezing and cramping up.

from Morgan and Jennifer: Follow your glass of prep with lifesavers.

When reading these I thought, "Wow. What great ideas! Why didn't I think of that?!"

Now I'm wondering what other simple tips might be out there. Perhaps we could compile a list of simple helps for the dysautonomia patient. We all know about compression, fluids, salt, wheelchairs, walkers, and meds for making life a little easier with dysautonomia. But what else do you find helps you?

Here are a few simple helps of my own:

- When you need to have your hair look nice for going out, just brush it and put on a fabric or ribbon covered headband. It is easy to do, looks nice, and works for short or long hair. My cousin made one of these for me and I love it!

- When you need to drink Gatorade in the winter, but you are cold and want a hot drink, make Spiced Tea (Russian Tea) from orange Gatorade instead of Tang. You then have a hot drink with electrolytes! (Of course, if you can't drink tea then this wouldn't work).

- Keep a list in a Word document of all your symtoms, and another list of all the meds you have tried, dates, side effects, dosage, etc. Update the lists as necessary and have an updated list for every doctors appointment. It saves having to remember all of your symptoms, med trials, current meds, etc.

- Keep a journal of every doctors appointment, even if it isn't related to dysautonomia. My mom started one of these for me when I was born. We never thought we'd need it, but it has since proven to be an invaluable resource.

If you have any simple helps ideas to share, please do! I'm looking forward to reading what little things make your life easier.

Rachel

[deucykub]

Great ideas!

The three little tricks that I can think of are:

- Cooking: Instead of standing in the kitchen to cook, sit in a chair with rollers and scoot around. This keeps the symptoms at bay for a longer period of time.

- Movies: Sit in the row right behind the row for people with disabilities/who use wheelchairs. There is always a rail that separates that row from the row behind it, which is great for propping up your feet and it doesn't impede on the person's space in front of you.

- Dining: Sit in a booth rather than a table with chairs and fold your legs up while you eat. This again helps keep those symptoms at bay.

I can't wait to hear everyone's great tips. I still have so few!

[pat57]

rest

[deucykub]

LOL, Pat. Best tip ever!

[mattsmum]

LOL @ the putting the feet up at the rails at the movies! I thought I was the only weird person who did that!

Let's see... I always keep a roll of peppermints in my handbag for those times when I start to feel yucky.

I find I last longer (i.e without wanting to go lie down) if I take a complex multiple B in the morning.

[pat57]

I guess I should say exercise too. Get all the exercise AND rest you need.

Most of us push too hard- I think.

[Sophia3]

Rachel

Why thanks for the kind words and this idea.

Guess what, I do not have the fixings to make Russian tea but do have powdered Orange Gatorade and made a HOT cup after reading this thread. Guess what, tasted good! It's cool, rainy and dark and dreary here and I needed Gatorade. Great tip.

Thanks

[Tammy]

Taking a vitamin that my body can actually absorb. Only one that works for me is from Melaleuca. Has large amounts of vitamin B's and seem to help a little bit at times. Avoiding stress whenever possible. Stress is not good for us, but sometimes it's unavoidable.

[Rachel]

Deucykub, - I sit in the same spot at the movies and prop my feet up on the rail!!! Wouldn't we look funny if we all went on an outing to the movies together! P.S. I love your cute new avatar.

If anyone would like a recipe for Russian Tea / Spice Tea, here is my recipe:

Russian Tea

1 cup instant tea

2 cups powdered orange Gatorade

1 tsp. cinnamon

1 tsp. cloves

Mix ingredients together. Put two heaping spoonsfull into mug of hot water. Enjoy.

Thanks for all of the simple solutions so far. I look forward to reading more helps, tips, and shortcuts.

Rachel

[Ernie]

Hi,

I always carry a foldable stool that ways a few onces. I use to sit on it on to put my legs on it.

[ajw4790]

Good idea! Let's see...

* plenty of water- take with me EVERYWHERE

* fans etc. to move around air and cool

* dress in a lot of layers

* heater fans vs. central heat because can move around and control better, is also less overwhelming

* little to no heat in the car, so don't start the day out feeling awful

* getting up and moving around frequently

* sleep!

* I now see salt packets in a whole other light, they are convienent little packets of salt to add to anything! (not the annoying thing on the bottom of the bag )

* Post-its- I have to have an endless supply to constantly write myself notes (because I am very forgetful! )

* Remember and actually take vitamins (I am bad at remembering!)

* Gatorade

I will have to think about it some more!

[Mrs. Burschman]

My husband and I generally go see movies at odd times, so I usually either put my feet up on the seat in front of me or put up all the armrests and lay across several seats and lean against my husband. Comfy!

At work, I kick off my shoes and sit cross-legged on my chair. I've always liked sitting that way. Now I realize that there's probably a physiological reason for that!

I like the Gatorade Russian tea idea. I'll have to try it! I like Russian tea.

Amy

[India]

I find peppermints help too--don't know why.

For me, living in a year round warm state, keeping cool is important and not being afraid to invest in a/c is vital--I feel guilty about the environmental impact, but it allows me to function.

Keeping ice packs and neck wraps in the freezer for hot days is also useful

Being very careful to keep up my vitamins and iron if necessary before and during my periods helps--get very symptomatic during that time.

Get a cat! I know it sounds odd and I know people are allergic to them, but all of my cats have been wonderfully empathetic and very therapeutic--will let me pet them for hours and the hypnotic and meditative impact of repeatedly stroking a cat (and I think the purr) is truly a great destressor sometimes! On the flip side, she does decide that she absolutely must be fed at odd hours of the early morning and that can be stress inducing, but all in all.....

Be well, everyone, and think good thoughts.

Aloha,

India

[corina]

nice topic rachel!

i have a stool on wheels to use in the kitchen, which works GREAT. we made an adjustment in the kitchen where i can prepare the food sitting, rolling my stool under the worktop. i also use my stool to try to vacuum. we removed all the obstacles that come with the doors (sorry don't know how to call it right now) which allows me to vacuum all around the downstairs living space. i can't do that on a regular base but at least when i'm up to it, i'm able to!!! our garden has been changed so that i have much better acces to it. oh, and when you need a new kitchen (we did that too because i couldn't work with it the way it was), it might be an idea to loose the hanging closets (i have severe trouble putting my arms up).

oh and gues what: for "working in the garden", i have this thing on wheels, which is meant to be of help when you move a heavy closet or something like that, to "roll me around" (yep, this was after we had it all paved ).

we have started a complete "make over" of our home in januar (although i've been "working" on it from last years july ). we are almost finished now and need this winter to recover from and just enjoy it!!! i will send some pictures to katherine as soon as i'm up to it!

corina

oh, now i realize this was meant to be "simple", sorry

[pat57]

with the holidays coming heres a great easy recipe.

http://www.recipetips.com/recipe-cards/t--...op-pretzels.asp

[yogini]

I'd say:

Smartwater (electrolyte water)

Netflix (easy movie rental)

Better than Boullion (super salty organic broth base which comes in a jar and costs 10 cents per serving!)

Hair dryer stand, so that you don't have to hold the hair dryer

Breathing exercises (through Dr. Weil's CD)

Polar heart rate watch

This is what I could think of at the moment - I'm sure there is more!

[jhjd]

I absolutely love the substitution of gatorade for tang in the tea!!! We always called that stuff friendship tea, but whatever you call it, it's absolutely perfect this time of year! The only problem is that now the plain old Lady Grey I'm drinking (wearing my fingerless gloves, natch ) seems sort of blah in comparison! I may have to run out at lunchtime and fix some...

And the pets thing is absolutely true. Whenever I don't feel good, my babies (dog and cat) always help just by curling up beside me. If only the puppy could figure out how to open the door to go potty by herself so I wouldn't have to get up, it'd be perfect.

It is true though that I've learned a lot of tips from this board. And I've learned that stuff I have always done instinctively, like fidget constantly, is "normal" and has a purpose. So thank you all!

[dizzygirl]

good topic! i love the sounds of the tea! im going to have to try that one!!!

few things i do...

keep baby dill pickles on hand in the fridge along with green olives...good salty snack and baby dills are low on caleries too!!!

uhm i think ive gone and bought walmart out of slipper socks!.. 2 things here.. they help keep ur tootsie toes warm.. and there is that uhm grippy stuff on the bottoms of them that help well grip when your stumbling around

i also always keep pretzels in the house.. and lipton cup a soup packets.. it call for 4 cups of water but i use 12 oz of water then cook it down to about 8-9 ounces and drink warms u up and gives you a salty boost

UHm if im up to blow dryer my hair.. and want to do something with my bangs instead of standing and fussing with a curling iron...i bought on of those circular burshes that have the vent thingys.. thru them.. safe alot of time and energy!.

rachel.. the headband thing is a good idea! i have abunch of those headband/ bandanna looking things.. and i pull my hair back in a pony.. and hide the rest under the colorful head thingy!

[Mrs. Burschman]

I thought of another thing ...

I take my showers at night. Then I just sleep on my hair wet, and it is dry by morning. No blow-drying!

Amy

[Rachel]

I thought of a few more things that help me...

- I sometimes use a spray in/leave in conditioner to shorten shower time. I just spray it into my damp hair, brush, and it's good to go.

- I sit on the bathroom counter to put on make up (on a good balance day!).

- My son plays with the swiffer and small dust-buster vacuum. He loves to clean! Which is great, because I physically can't clean at all.

- Keeping pillows and blankets in the living room, bedroom, and car so that I can always get comfortable and rest wherever I am.

- Pager phones. I have a phone with a page feature on my nightstand. If I need help and can't get out of bed, I just page the phone out in the main area of the house and my husband comes to my rescue.

- Bringing a lightweight blanket to doctors appointments incase I'm left waiting in a chilly room with a hospital gown.

[pamyla]

Good topic! Here's what I can think of right now:

- I keep a spreadsheet of all my medications and vitamins, which I update and print out a copy everytime I visit a doctor. I also make sure to write down any questions I want to ask, and a timeline of future appointments, main symptoms, etc. It's the only way I can keep on top of everything

- Power/nutrition bars - great to keep in your purse just in case you get stuck somewhere and the blood sugar is dropping

- I use those neck wraps with rice in them, I don't know what they're called, but you can heat them in the microwave if you're cold, or put them in the freezer to cool yourself down

- laundry bags - while I can't lift a laundry basket to get it down the stairs, I can manage to kick the bags down

I'm also a big fan of headbands for the hair, or ponytail holders - and definitely air drying

[ajw4790]

Let's see I randomly come up with others...

* don't wear black (or very sparingly, because it is very easy to get overheated)

* the little hand warmer packets that hunters etc. use to keep your hands warm in the winter

* other ice/hot packs as well

* an remote control car starter for the winter (I am hoping Santa will bring me one!)

* keep extras of everything on hand because it never fails that I start to feel bad and unable to go shopping when I run out of stuff

* a cordless minivac- so don't have to lug out the huge vacuum for little messes (Santa is bringing me this one!! )

* wireless internet- so you don't have to sit in one particular place to surf (my current situation- santa is also helping with this one!)

* Insulate your home/ apt. to reduce drafts- those tend to make me feel worse

* I second the Smart Water/Vitamin Water (I haven't been able to find the flavored Smart Water) Also, Wild Oats/Whole Foods tends to have them cheaper (their brand)

* I also like the little Capri Sun packs of their sports drink

* Berry Almond Lunas and Peanut Butter Pretzel Clif Mojos

I am sure later I will come up with more...

[taylortotmom]

The Venus Breeze razor (has a changeable blade with built in shave gel) has changed my life. I can shave my legs- which use to be a daunting task. I would have to break it over several baths (I'm tall and no longer can stay in warm water very long). It is amazing how much this razor has helped- I can now shave both legs- even standing up in the shower- which use to be undheard of for me. I agree with the recommendation of the Swiffer (I use the Wet Jet) and also recommend Scrubbing Bubbles disposable toilet cleaner pads. You just slip the little pads on a special "arm" thing and clean the toilet then release the little pad and flush it. No bending or scrubbing necessary. Both products reduce the amount of physical energy required for the tasks. All three products are a little pricey but well worth it to me.

Carmen

[ajw4790]

Online holiday shopping!!! To beat the heat and crowds!

[Kitsakatsa]

I agree with the cats part. My two cats Search and Destroy keep me going and always seem to know when I need a cat (or two) on my lap.

My best recent discovery is "Cuddle Duds" ClimateSmart long johns. The ClimateSmart kind are made of very thin, silky fabric and wick moisture away so that you stay comfortable, warm and not too hot all day long. I exercise in them and they are PERFECT to wear as unders underneath the medical stockings because they keep your legs and bottom from chafing. I would literally have big welts, now completely gone and I can wear my stockings everyday.

They have several varieties, softies, etc. I've not tried those kind because I'm so in love with these that I cannot not order them. I have had them for 1 weekend and it has been by far the most comfortable weekend ever.

They are available @ JCPenney and Amazon, but if you order from essential apparel on Amazon- don't expect them to reach for 3 weeks or so- big problem in my book!