You are currently browsing the tag archive for the ‘disability’ tag.

Just a quick update on blog structure, update schedule, etc.

I’ve created several new tabs at the top. These include one dealing with the update schedule and another with a few disclaimers. I wrote them, which means they’re exciting and worth reading!

Some highlights from the schedule:

My goal is to update three times a week, with the potential for more updates if I find something really exciting or time sensitive.

Expect updates roughly every Monday, Wednesday and Friday.

The disclaimers include some important points, such as:

  • I am an individual without a medical degree….
  • I use the word “challenges” on purpose, because I don’t see my physical ability level as something that should define who I am….
  • I’m not saying that disability is something you can “think yourself out of” if you just “work hard enough”….
  • Health care issues require institutional change….
  • I don’t speak for the entire disabled community

There’s more stuff, but you should really just check out the pages. And if you haven’t yet, the introduction is definitely worth reading.

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As I write this, the weather forecast in my area is predicting an unusual 20-30″ of snowfall in my region. Once the snow stops, we’ll be engaged in the enviable task of digging ourselves out.

I’m fortunate enough to live with a group of people who can take care of the shoveling. However, many people with physical challenges (such as acute illness, disability, or age) don’t have household members who are able to take care of the shoveling.

If you’re able, help your physically challenged neighbors out when it snows. (I would generally recommend asking if someone wants help, rather than assuming someone is unable to shovel themselves.) Who knows, maybe they’ll bake you delicious cookies in return.

Another important thing to remember: it’s really easy to injure yourself shoveling lots of heavy snow. Shovel “smart” rather than shoveling fast.

The University of Wisconsin has a very informative safe shoveling guide. Some excerpts:

Remember all that stuff about keeping your knees bent and your back straight when lifting boxes?  Well, it turns out it’s equally true of lifting snow. Especially heavy, wet snow….Also be careful of twisting your body sideways as you lift a full shovel-it’s easy to throw your back out when you meant to simply throw snow….

“Lifting a large amount of heavy snow can dramatically elevate your blood pressure in just a few heart beats. It is often safer to use a smaller shovel and make each lift lighter. You should be able to keep breathing comfortably while you work,” says Jonathon Keevil, MD, of UW Health’s preventive cardiology program.

Stay safe, stay warm, and enjoy the winter wonderland while it lasts!

This post is the third in a three-part series on exercising with physical limitations.

If you went to public school in the United States in the past couple of decades (or had a child that did), you’re probably familiar with the dreaded physical fitness tests administered every year. Gym teachers administer five fitness tests to determine each student’s fitness level. In front of all their classmates. These tests include: “curl-ups or partial curl-ups, shuttle run, endurance run/walk [‘The mile run’], pull-ups or right angle push-ups, and V-sit or sit and reach.” The students who pass a certain number of tests get awards, and the others sigh in relief because another year has passed.

Those events were hellish for me, although possibly not for every child. I always had trouble with the pull-ups. Since my gym classes tended to be after lunch, the mile-long run/walk usually ended with me clutching my side while walking around the field as my classmates headed off to get drinks of water.

I am not here to talk about those tests.

The same President’s Council on Fitness and Sports created some very helpful programs for adults. (Or maybe it’s just better if you’re an adult, it’s voluntary, and you’re not judged by a jury of your adolescent peers.)

These include the Presidential Champions* and Active Lifestyle programs.

The Active Lifestyle program is a really awesome program that I’ve participated in twice. I’ve found it really good motivation to continue exercising. Your goal: Exercise 30 minutes per day, 5 days per week, for 5 weeks. (You have 8 weeks total for the program, so if you end up missing a week it’s okay.) “Exercise” can be anything outside your normal activity level – walking, doing housework, gardening, swimming, playing Nintendo Wii. It can be low-impact, ease-you-in kinds of exercise, or it can be high-endurance things like weight-lifting. They don’t even have to be 30 consecutive minutes of exercise. Basically, the Active Lifestyle program encourages you to work at your level of fitness.

Many of the fitness resources I have state that keeping an exercise log helps motivate people to continue exercising. (I can’t link them here, because they’re books. Sorry for the lack of an immediate citation!) It’s really satisfying to be able to look over your log and think, “Wow, when I began I could only walk for 10 minutes at a time. Now I’m walking to the park!” The program helped me increase my confidence in my ability to exercise. Even when I’m unable to exercise because of a circumstance outside my control (such as a stomach bug), I know that I can ease back into the program.

Oh, it’s also nice to get a snazzy certificate at the end.

*In case you were wondering, the Presidential Champions program is a more challenging program, in that you input the kind of exercise and length of time you did it, and the program assigns a number of “points” to your total score. When you reach a certain number of points, you get the medal. There is no time limit, although they do limit the amount of points you can get in a day to encourage participants to exercise daily rather than in large bursts. (Yes, Sarah Palin was a recipient of the Gold Presidential Champions medal. That does not mean it’s good or bad, and it did get some publicity about the program out there.)

This post is the second in a three-part series on exercising with physical limitations

Website, website, I’ve got your website right here! There’s a great website about exercise and physical limitations, and it confirms a lot of what I said the other day.

It appears that muscle deconditioning occurs when people with FM neglect exercise in order to avoid pain. Deconditioned muscles use excess energy to accomplish tasks. This may contribute to more fatigue and make the muscles more susceptible to microtrauma, thus aggravating pain with only a low intensity of exertion. This cyclical process leads to atrophy (wasting) and greater effort performing various activities. Exercise can help to counteract this deconditioned state by improving oxygen delivery, increasing cellular metabolism, reducing muscle tightness, and eventually relieving pain to some degree. An important benefit during aerobic exercise is that muscle temperatures rise and this may possibly lead to greater relaxation.

This excerpt is from the National Center on Physical Activity and Disability (NCPAD) website, which includes an entire section on Fibromyalgia. There’s information on types of exercise, how/when to incorporate aerobic exercise/strength training/stretching, and references to books and journal articles.

The website also has sections on a number of other disabilities, ranging from “Acquired Brain Injury” to “Yoga for Individuals with Disabilities.” A full list of conditions and their related sections can be found here.

NCPAD is funded by a grant from the Centers for Disease Control and Prevention, and run by the University of Illinois.

Disclaimer: As with all things, consult with your medical provider or trained professional before starting a new exercise program.

Aimee Mullins and her 12 pairs of legs | Video on TED.com

This is an amazing video about a woman and her 12 pairs of prosthetic legs. She discusses ways that her “disability” has created opportunities and experiences that she never would have had otherwise. There’s a lot of good empowerment their. Plus, some of those legs are really beautiful artwork.

Description from the TED website:

“Athlete, actor and activist Aimee Mullins talks about her prosthetic legs — she’s got a dozen amazing pairs — and the superpowers they grant her: speed, beauty, an extra 6 inches of height … Quite simply, she redefines what the body can be.”

This is actually something I wrote a year-and-a-half ago, but I think it’s still relevant today. I would also add the caveat that thinking only in terms of what one cannot do is not a healthy endeavor. It can be empowering to think about changes in privilege and perspective resulting from major life events. It can be even more empowering to see how many of those glass ceilings you can bust wide open.

***

A few years ago, I encountered Peggy McIntosh’s piece, “White Privilege:  Unpacking the Invisible Knapsack.”  In it, she talks about race, racism, and privilege in a way that was unfamiliar and eye-opening for me.  She states that, “As a white person, I realized I had been taught about racism as something that puts others at a disadvantage, but had been taught not to see one of its corollary aspects, white privilege, which puts me at an advantage….White privilege is like an invisible weightless knapsack of special provisions, maps, passports, codebooks, visas, clothes, tools , and blank checks.”  She created a list of fifty privileges she had as a white person that people of color do not.  Her work inspired me to look at racism and my own privilege in new ways, and ask new and difficult questions of myself.  How do I contribute to racism?  How can I share or give up some of my privileges?  Am I unintentionally oppressing others in my everyday encounters?  I haven’t come up with concrete solutions on an institutional scale, but I hope that I have been able to change some of my everyday actions in a way that challenges white privilege.  I hope that, in the process, I’ve become a better ally, not just to people with a different skin color, but to people who are different from me in general.

I also have an invisible difference.  [Four] years ago, I was diagnosed with Fibromyalgia.  Fibromyalgia is a Rheumatoid “syndrome,” or collection of symptoms.  Doctors don’t know what causes it, and diagnosing it can be difficult.  Its main symptoms are pain and fatigue.  Until the 1980’s, medical professionals did not even have a classification for Fibromyalgia.  Fibromyalgia primarily affects women; women with Fibromyalgia were discounted as being “hysterical” or prone to exaggeration.  Being diagnosed with Fibromyalgia drastically changed my life and led to a loss of privilege. I began to think of all the assumptions I’d held about people in wheelchairs, or the health classes I had dozed through in high school when they talked about chronic illnesses.

Disability status is something that can change, as race cannot.  It is also more easy to ignore, as many chronic illnesses are invisible.  In most cases, you cannot look at someone and see that he/she/ze has HIV, or Fibromyalgia, or Heart Disease.  At least in my case, when I was able-bodied I went through the world completely unaware of the ability privileges I held.  I have found that it’s often difficult to communicate with people who have never experienced disability before, either through their own ability level or a close relationship with a friend or loved one with a disability.  I find myself playing “educator” a lot, a role which can get tiring rather quickly, especially when you are already dealing with fatigue.

At the suggestion of a friend, I decided to write something modeled after Peggy McIntosh’s work.  In the following list, I write about “everyday” privileges I used to have as an able-bodied person.  I use the present tense, to make it more relevant and accessible for people who currently have able-bodied privilege.  Although I have co-morbid illnesses along with Fibromyalgia, I decided to focus on that illness in particular.  In addition, it should be noted that my experiences are not the same as every other “disabled” person, or even every other person with Fibromyalgia.  However, I do believe they share common elements, even if the specifics are not the same.  My hope is that people will find new insight into their own assumptions about their invisible knapsack of ability privilege, just as Peggy McIntosh helped me realize new things about white privilege.

  1. I can wear whatever clothes I want, without worrying that wearing them or putting them on might hurt my body in some way.
  2. I do not have to remember to take medication, or suffer the consequences of forgetting.
  3. I do not have to worry about the side effects of my medication.
  4. I have never had four doctor’s appointments in one week.
  5. I have “sick days” instead of sick months.
  6. I do not have to “out” myself as a disabled person, or worry that people will treat me differently because I am disabled.
  7. I am able to drive myself places when I want, without worrying that I’ll get too tired to drive myself back.
  8. I can go to school full time, if I wanted to.
  9. I can have a glass of wine or a bottle of beer if I wanted.
  10. No one has ever ended a budding friendship because they were afraid of my illnesses. Read the rest of this entry »

My Etsy Store

A fibro-friendly item from my Etsy store

I've been working on making fibro-friendly jewelry. I'd love it if you checked them out by clicking the image above, or going to www.etsy.com/people/RogueCrafter

About Me

This blog is intended as a place for me to reflect on my own healing journey, in the hopes that others may also gain insight from my experiences. I've "borrowed" a line from Robert Frost's poem, The Road Not Taken:

'Two roads diverged in a wood, and I
I took the one less traveled by,
And that has made all the difference.'

I think the most important thing for me now is that I feel empowered to be a force for positive change in my life. And that, my friends, has made all the difference.

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