Myositis Hacks – Make your life with Myositis easier
by Emily A. Filmore
Aquatic therapy has taught me a lot, aside from its obvious benefits of improved strength and flexibility. I have also learned about my ability to adapt to the limitations of my body.
How can Aquatic Therapy do that? It began in a very subtle way. My PT is very observant and began pointing out the “cheats” I have developed over the years for my physical weakness. Here are a few examples:
- Walking down stairs “duck footed” to use the muscle that is strongest – inner thigh – to support my weight,
- Neck and shoulder tension resulting from having to hold my head up with no back or core strength,
- Even quick little “shortcuts” I have made in order to lift things that are too heavy. Like balancing things on my forearms and lifting with my whole body, rather than using my hands.
She helped me begin looking at these adaptations as strengths instead of as the result of weakness. She encouraged me to use them when appropriate and stated she imagined I had many more I used to get through the day. She asked me to look for more opportunities to “hack” my life. This newfound awareness has allowed me to begin applying a conscious attitude of flexibility to more aspects of my life. With the holidays approaching, energy conservation is very important for those of us with Myositis and other debilitating, chronic illnesses. We want to be able to enjoy time with family, right? Well, here are a few changes I’ve made to conserve energy and strength, and I hope they will inspire you to create your own “Myositis Hacks.”
I don’t know about you but, even though I “look normal,” I get tired even thinking about going to the grocery store. And, if I have to do more than 2-3 errands in one trip, well, I am exhausted. Big box stores? They make me want to cry. Even if I make it through the errands and the store, bringing the bags into the house is a difficult, sometimes dangerous, more often impossible, proposition.
About nine months ago, I tried my luck at online shopping for every day essentials. I opened an Amazon Prime account (Two day shipping? What?) and started having big items delivered such as toilet paper, paper towels, dish detergent, and cleaning products. Oh my, how much of a difference this made in my life! Now if I need something from Target, I can be in and out quickly. No longer do I have to worry about the dreaded full car trunk when I get home, and no more worrying about running out of toilet paper and being too tired to go get more.
Over the next few months, we continued to add items to our Amazon shopping list, and now we get our daughter’s healthy snack bars, coconut oil, nuts, crackers, facial tissues, and more with the click of a mouse. It has been a huge convenience. And, remember you can shop using Amazon Smile to help benefit us. Just use smile.amazon.com, select Myositis Support and Understanding Association as your charity and start shopping.
Fresh Groceries delivery
After experiencing success with Amazon.com, I decided to look into grocery delivery services, imagining that they would be prohibitively expensive. I was wrong! I found one that was affordable with prices for organic produce comparable to my local grocery store. We use Green Bean Delivery, which is only available in a few states right now, but there are other delivery services and options available. I know my Mother-in-law’s local grocery store delivers and I would guess that you could almost always find one nearby.
This hasn’t completely eradicated my need to go to the grocery store, but now when I do go shopping, it is a much more tolerable, shorter, trip.
I have been acutely aware of my strength and fatigue the past couple of weeks as I prepare for the holidays. Once again, I have turned to online shopping to do my gift buying. Many retailers offer free shipping and deep discounts online and often have more merchandise options available than in the stores. Even many Mom and Pop local businesses now have online shopping available, so you can still support your local community by shopping small.
Don’t forget to search online for coupon codes. For instance, do a Google search for “Best Buy coupon code” and enter the code you find during checkout and not only did you save time and hassle, but you will have saved money, too!
With a few exceptions, I have done most of my holiday shopping online. This saves me the time and energy of walking, fighting crowds, standing in line under fluorescent lights, hauling bags to and from the car, etc. I highly recommend you consider checking out your favorite retailer’s websites!
Disabled Parking Placard
Nineteen years into having Myositis I finally asked for a disabled parking placard for my car. I didn’t want to do it. I worried about being accosted in the parking lot by someone accusing me of cheating. I felt like my pride had taken so many beatings, I didn’t know if I could “give in” to this and survive it emotionally. I try not to consider myself “disabled.”
But as I said earlier, those 2-3 errand runs left me depleted and wanting to lie down in the middle of the parking lot, so…
I asked my PT her opinion, and then my doctor. They both thought it would be beneficial on my “bad” days to have it and save some energy. I don’t use it every day. But, if I pull into a very busy parking lot and know I am going to have a trek in from my car, I find a disabled parking spot (I usually take the one that is farthest away) and feel grateful for the accommodation. And, on my “stronger” days, I park a little farther away and take advantage of my extra energy. I have yet to be approached by any naysayers, and I am committed to avoid over use but it has made a huge difference.
If you haven’t gotten one yet, please consider this a gift to yourself. Give yourself permission to shorter walks when you are tired, more convenient access to your destination, and a faster getaway when you have overdone it throughout the day.
To me, living with Myositis isn’t just about staying as healthy as possible; it is also about finding things that make my life easier, emotionally and physically. I realize that I cannot always control my strength, but with these simple “Myositis hacks” I can conserve energy and get more out of life!
What are some “Myositis Hacks” you can share that have made your life easier?
What is a lifehack?
A life hack is: A tool or technique that makes some aspect of one’s life easier or more efficient.
(Definition retrieved from http://www.urbandictionary.com/define.php?term=lifehack on December 15, 2014).