All Posts Tagged ‘Parkinson’s

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Mandated Empathy Makes Me Sick(er)

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To my fellow members of the chronic illness community,

As illustrated by our collective Twitter, Pinterest, Instagram and Facebook posts, an overwhelming amount of us devote considerable time each day to criticizing the healthy.  We’re offended when our healthful counterparts don’t anticipate our needs, we’re insulted when they ask the wrong questions, we sneer when they aren’t well-versed in Spoon Theory, we’re scornful when they invite us to participate, and then after all that, we resent it when we feel left out.  None of us are benefiting from this current communications approach.

In the first place, isn’t empathy that is mandated heading towards oxymoron-land?  Empathy should be a kindness voluntarily extended over time, not obligatory platitudes resulting from the quotes we keep posting on Facebook.  Let’s take a break from “TWELVE THINGS YOU SHOULD ALWAYS SAY TO A PERSON WITH CHRONIC ILLNESS” lists.  (I’d like to know the success rate of such postings.  Are your friends going in order down the list or are they free-styling?  If they’re leaving in a hurry, can they comfort you Chinese takeout style and just shout “Oh right, #3 and #7!  See you tomorrow!”)

We want someone’s compassion towards us to be genuine and of their own volition.  I myself was elated the day my veterinarian called in the rest of the office staff to ooh and ahh over our new cat.  It was definitely insinuated that this particular feline was their new favorite.   When the same thing happened with my next cat, I was on Cloud Nine and logically concluded that I must be The Best Cat Adopter Ever.  Well, eventually I found out that all new pets get the same amount of fuss; it’s like company policy or something.  The cats took this revelation pretty well.  I, however, was utterly crushed.  Mandated affection just doesn’t feel as affectionate.

What’s most damaging about the negativity of these posts is not to our group image but to ourselves on a personal level.  Maintaining an identity separate from that of “patient” and nourishing connections with people who aren’t sick can be challenging but it is vital if we want to thrive in spite of a chronic illness.  Despite what we tell ourselves, continually posting these collective gripes is NOT healthy venting, it’s NOT social bonding, and it’s NOT raising awareness.  It’s an “us versus them” mindset.

So I say, let’s resist Pinterest Pins featuring a lonely planet in a dark sky with the despondent message, Healthy people will never understand the burden of illness.  When illness is isolating enough already, why throw down negative borders separating us further from the rest of the world?  Jedi Knights bear a lonely burden, but they don’t go around the universe bellyache-ing about how no one understands them, now do they? (#iHeartRey)

Now before you start composing a nasty comment about what an insensitive traitor I am, let me be clear:  I absolutely believe that as chronic illness survivors, we deserve the most level playing field possible, at work, at school, at home.  To get this equity, we often have to speak up.  But making oneself heard with a direct request (I will need a specific style of office chair please; Occasionally I may need an extension on term papers; Someone else better carry this #$&!ing laundry basket upstairs…) is wholly different than complaining passive aggressively on social media.

We survive the hell of chronic illness every day – we should show (not tell) people that we’re the toughest in society, not the whiniest.  We may be trapped in these dysfunctional bodies but we shouldn’t be confining ourselves, socially and mentally, to resentful casualties.  Like yours, my illness involves pain, exhaustion, embarrassment, and disappointment but I’ll be damned if I allow it to breed grudges when I could use it to generate strength, practicality, and thick skin.

Sincerely,

AshleyJane K. Boots

Chronic Illness Comrade

AshleyJane K. Boots is living with the complications of Lupus and Fibromyalgia.  She lives a colorful life in Concord, NH with her husband and his extra-ordinary teenage daughter.  AshleyJane blogs at www.LivingIncurably.com 

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Living Incurably Solutions: Grocery Transport

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Problem: Carrying groceries in from the car sets off muscle spasms that ruin the rest of my day.

New Solution: I purchased this rolling cart/wheelbarrow  for $24 from Amazon.*  It’s sturdy enough to roll over curbs but small enough to fit through house doorways.  One of the reviewers on Amazon said she used it for laundry too.  Great product saving me lots of grief!   #NotSponsoredJustLikeIt

*Note: It appears the price of this fluctuates.  When I bought it, it was $24 with free shipping.  It’s much higher at the time of posting this but hopefully it will go back down again or you can find something similar.

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I really like being interviewed. Anyone else care to hear my thoughts? I’ve got lots.

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I had an interesting conference call yesterday with some of the folks at a startup company named PillDrill.  They have been working on their invention for two years now and are looking to launch in 2016.  They had a bunch of questions for me about being young and chronically ill – my medication habits, experiences, etc.  It was fun speaking with them (in case you can’t tell I don’t mind sharing my opinion and talking about myself) and their product sounds quite intriguing.  It is a 7-day pill tray that in a variety of ways alerts you and tracks your medication intake. (EDIT: All the info connects to an app where you can enter prescription info and also view your info.)

It also offers an easy way to track your symptoms. See the little cube on the right?  It has different smiley faces on each side and you scan the side of the cube by passing it over the base that corresponds to how you’re feeling that day.  Favorite part.

When we talked I told them about the times I’ve screwed up my medication, how that happened and what the consequences were.  I also told them about how much I dislike parcelling out the pills into my pill planner once a week.  I worry I’m going to screw up again and have a horrible week, plus I just emotionally hate looking at all those pill bottles at once.  Their product couldn’t change that, of course but I did suggest that in their manual they suggest parcelling your pills in the morning when you’re sharp and then maybe some kind of little treat afterwards.  Like a cookie.  That would get me to do it at the proper time which would reduce mistakes.

We also talked about what kinds of symptoms I would keep track of.  Right now it would be headaches (my dry needling doctor always wants to know) plus my daytime sleep disorder episodes (which by the way was diagnosed as idiopathic hypersomnia + parisomnias, meaning falling asleep during the day at unwanted times + nighttime terrors/hallucinations).  A sister disease to narcolepsy.  I am interested to see how many of the little pods I would need though.  I take medications 4x time and right now I use 7 boxes, each box having 4 compartments – one compartment covers my whole day.  With PillDrill will I need 28 pods?  Also I keep thinking about the name “PillDrill.”  It doesn’t dazzle me.

If you have thoughts regarding how you take your medications or what symptoms you would keep track of, feel free to leave a comment (there’s a “Leave A Reply” command right at the beginning of this post)  and I’ll forward your opinions to PillDrill.  Maybe you’ll get to help shape their product and/or marketing campaign!

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Rerun of The Toughest Man on TV

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If you haven’t before, I encourage you to check out the September 2013 Rolling Stone article, Michael J. Fox: The Toughest Man on TV, written by Brian Hiatt.  Michael J. Fox, whose successful career in acting started in 1973, has been surviving Parkinson’s for 25 years and should serve as a fresh breath of air to all of us who spend time reading and writing about chronic illness.  Click on the image below to read the original article.

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Happy Sunday.

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My Guest Post on the blog, “Counting My Spoons”

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The lovely Julie Ryan is hosting a guest post of mine over at her blog, Counting My Spoons.  Click here or on the image below to read the post entitled, “Making It Work: Chronic Illness and Fashion.”  

Would you indulge me in something?  I think it would be so fun if everyone posted a picture of themselves wearing their own favorite outfit – either tweet it and tag me @LivingIncurably, Instagram it and tag me @LivingIncurably or post it on my Facebook Page   Can’t wait to see you and your fashion!

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Living Incurably on Instagram

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Living Incurably is now on Instagram! There will be some crossover with the blog, but also some original content as well. I hope to see you there and follow you in return!

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Follow this link to Living Incurably’s Instagram page.  Here’s a photo that wouldn’t normally be on the blog but would be on Instagram.  Click to read the caption and read the (short) story behind the photo.

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Organized Bohemian

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The house we live in has “character” or is…how to say, a little….ramshackle in places, and while I do love clean uncluttered space, minimalist decorating here at Chez Boots only accentuates the plentiful cracks, tilts and gaps.  So I’ve been slowly decorating with a theme I have come to call, “Organized Bohemian.”  “Bohemian” in the sense of artsy and colorful (distracting ones eyes from the cracks, tilts and gaps) and “organized” in the sense of sending a clear message that this is not in fact a hippie commune.

The bedroom has been my latest focus, where I ditched an enormously wide falling-apart bed frame, and bohemed it up with a drapy canopy and a luscious amount of colorful throw pillows.  Voila. We’ve got a romantic and comforting artsy little nest.  When my Venn Diagram dictates an afternoon in bed, I feel quite luxurious laying there.  And so does Midge.

 

Duvet cover by Target.  Sponge-painted walls by us, paint from Lowes.  Art by Christopher.  Throw pillows from Marshall’s.  Canopy from Amazon.  Scarf atop canopy a brilliant find at our local Rite Aid.  Cracks in the walls and tilted floor by Father Time & Mother Nature.

How could you make your Venn Diagram dictated resting spot more enjoyable for yourself?

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