It''s possible to live well with a chronic illness...all you need is a little strategy and a sense of humor.
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Holidays for Spoonies: Tips for Surviving the Holidays
Well, I was not super successful in managing my stress, pain and fatigue over Thanksgiving. But, I am not giving up...I am going to try again between now and New Years Day to limit my activities so that I have enough energy to enjoy it with my family.
I felt inspired to record a confessional of my holiday sins, then share my plan for not repeating my very naughty (Santa, dont read this) behavior. Ill embed the video below, but here are some of my tips:
order food (as I did for Thanksgiving) and resist the temptation to add more dishes to the meal
if you must cook, do it in the weeks prior and freeze, freeze freeze!
limit the size of meals...pair it down to 2 or 3 dishes
plan ahead for social events by resting ahead of time, dont overbook!
shop online...AVOID STORES! Seriously, do not go to a retail location if you dont have to
replace time and energy intensive traditions with new ones...instead of installing outside lights for the neighbors to see, hang them inside. Its easier to do, much warmer and youll be the one benefiting!
A Gluten Free Thanksgiving for Spoonies
Chronic Life Hacks: Going to the Movies
Traveling with Food Sensitivities (and Dealing with Intolerance of the Human Kind)
Posted at 10:23 AM in Chronic Life Hacks Permalink
Chronic Life Hacks: Going to the Movies
Lupus, Fibro, RA or any number of pain-inducing chronic illnesses can make going to the movies a challenge. Personally, I would rather watch them at home where I control the variables. But sometimes, that movie popcorn calls to me. So, Ive come up with a chronic life hack to make it more enjoyable.
The strategy is two-fold: control the environment (as much as possible), then trick out my
There is no real substitute for movie popcorn
person with goodies that will address the remaining factors. I start by looking for a movie theater that has those super cushy seats...bonus points if the arms fold up and I can make a mini love seat to snuggle with my sweetie. Movie seats have really come a long way. If in doubt, look for the newest theater near you...theyll have the best seats.
Another variable that I can control is time, both of the showing and length of the movie. I am best earlier in the day. Movie times that start around 11 am-1 pm are good choices. And when it comes to length, forget the 2.5-3 hour movies. Sitting in the same relative position for that long is only going to lead to one thing...pain. I heart movies that are less than 2 hours!
And be sure to arrive early...Im not talking super early, but get there early enough that the lights are still on. The last thing you need is to risk falling because you are stumbling around in the dark trying to find a seat.
Now that Ive chosen where Im going and what Im seeing, I put together a little toolkit to address the overwhelming stimuli of a movie shown in the theater. Many people with chronic illnesses have a hard time managing extreme stimuli. Extreme temperatures, sound, scents, and visuals can all lead to pain...and that is not a part of a fun movie experience (unless you are in to that sort of thing). Heres what I do to deal:
Earplugs: I dont know how non-spoonies deal with the decibel level. Its so freaking loud Im surprised we arent rendered temporarily deaf. I use the little foam earplugs. It dampens the sound enough that I can enjoy the movie.
Sunglasses: this only occurred to me after watching a 3-D movie...wearing sunglasses reduces the amount of visual stimuli, therefore reducing the likelihood that Ill end up with a migraine.
Layers of clothing: Ive found the temperatures in movie theaters to trend toward the cooler side. But, Im the kind of person who is always hot, so Im usually just fine. If you are easily chilled, dress in layers of clothing so that you can regulate your body temperature. Dont be afraid to bring gloves or a hat, particularly in winter.
Shoes: I recommend always wearing tennis shoes or some other close toed shoes with socks. Nobody wants popcicle toes.
Medication: always take your meds on time, with this much activity, you dont want to delay a dose. If the timing of your regular dosage occurs during the movie, take your meds with you and set a vibrating alarm on your phone to remind you to take it.
Nap: plan on taking a nap when you get home. If you are like me, regardless of what you do, youll be tired from all of the fun. Dont push yourself to keep going...give your body a break.
This might seem like a lot to do just to go to the movies. And you may decide its too much effort for the payoff...totally cool, consider a Netflix subscription for affordable home movies. But, if you decide you want that big screen experience, dont go without thinking through options for accommodations. It can make the difference between a great experience and a miserable one.
**By the way, I went to see The Life of Pi. The visuals were amazing...really stunning. And while it was a good story, it was just too much suffering for me. I just get so emo at the movies...jeesh...
Photo Credit: Sara Ackerman via Flickr
Posted at 09:46 AM in Chronic Life Hacks Permalink
Chronic Life Hacks: My Bedside Table, I
There are lots of things we can do to make our lives faaaar
better...shortcuts that make experiences more enjoyable and reduce
wasted energy. I call them "Chronic Life Hacks". Because, lets face it, I start my days feeling like I
ran a marathon, so I need to be thoughtful about where and when I expend
My bedside table and I have a complicated relationship. I spend the majority of the day living from my bed. Its the comfiest place in the house, so it stands to reason that Id spend a lot of time there.
My awesome Craigslist Crate and Barrel bedside table. Affectionately known as "The Bridge".
Ive found that having an organized bedside table is essential...and there are a couple of reasons why. First of all, having what I need close at hand means I dont have to get up 500 times, which conserves energy (not to mention those days when I can barely get up once or twice, let alone 500.) Secondly, having my essentials handy means that I am empowered to do the things I need and/or want to do. I like to think of it as the Bridge of the USS Enterprise (Im a Next Generation fan, but feel free to insert your fave Star Trek franchise.)
After much searching, I found an awesome set of Crate and Barrel bedside tables on Craigslist. They are about 3 feet tall with three tapering tiers. I love this set up because it maximizes vertical space instead of relying on a single horizontal surface.
The bottom shelf is the widest. Here I have a wicker basket full of assorted heating pad-type devices. Theres an outlet right by my side of the bed, which makes it super easy to store my heating pads (the 5 minutes a day they are not in use) to keep the room looking neater.
The next shelf up is a bit narrower, but the perfect fit for my lap desk. I use it often for work (laptop, iPad), as well as daily living (manicures, hard copy reading materials, writing letters.)
The top shelf has the majority of my necessities for daily living. Please note the small bell at the back, in case I need to ring for the (nonexistent) butler.
The top shelf is the narrowest, but still a good width, around 24 inches in width, maybe 16 in depth. Honestly, I wish it were a bit wider, but Ive worked around that by adding a square sea grass basket for more storage. In it, I have an assortment of things I might need. I have electronic remotes, a nail file, Elizabeth Arden 8 Hour Cream (so awesome it will get its own review), a small notepad and pen, ear buds and a pain relieving cream.
On either side of the basket, I have additional, smaller storage. On the left, I have a ring and jewelry holder and on the right, I have a bowl that holds Carmex, hair ties, bobby pins and change. Honestly, I have no idea why I have change. Its not like people run up to my bed asking for it, nor do I have any vending machines in the house. But whatevs, it makes me feel more prepared.
I have a small stack of mail to be read and the occasional catalog or magazine. And I have another hand cream that isnt as heavy as good ole Liz. Oh, and a Britta water bottle with a filter in it so I dont have to go to the kitchen (downstairs) for water. And one more thing, I would find a way to keep my meds on my table, too, but I have a 9 year old in the house. Im sure I could find a way to secure them, but I just feel better keeping them up high and our of site.
All of this is completely terrific...and essential. The problem happens after a few days of accumulation of unrelated items. If I dont stay on top of it, I end up with piles of crap on all levels. Of course, that makes the whole system dysfunctional (much like my family) and I cant find anything.
What I had to remove from the bedside table to make it clean enough to photograph. Yes, thats 50 Shades of Grey and a bag of Hersheys chocolate, dont judge.
Most days I dont feel well enough to clean on a grand scale. So Ive learned to break it up into smaller pieces. And my bedside table is a great example of that. I simply have to stay on top of what is there...I mean ruthlessly edit. If I dont, I waste energy in frustration and physical effort and that totally defeats the purpose of the table.
Besides, would Jean Luc have a messy bridge? I think not. Do you have a bedside "bridge"? If so, whats in/on it?
Posted at 08:46 AM in Chronic Life Hacks Permalink
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