All Posts Tagged ‘POTS

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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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Getting dressed & staying dressed

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Quick note: check out my review of a nifty vintage-inspired turntable (aka, vinyl record player) that folds up into almost a briefcase here.

Back in March I wrote an article for the blog Counting My Spoons entitled, “Making it Work: Chronic Illness & Fashion.”  I wrote about how picking out an outfit the night before helps me silence a nagging little voice that tries to tell me that because of the various symptoms that potentially could hit the next day that maybe I should just throw in the towel (before the day even begins) and just stay home.  Now staying home is of course that right choice some days, but there are plenty of days where working, socializing, and of course shopping are even better for you health.  You can find that article here.

On that note, I’ll share a follow-up tip for those of us who tend to live in yoga pants and t-shirts:  When you can, stay dressed in your day clothes a little later than normal.  You might notice some changes in how you feel mentally if some days you wait until evening to get into your lounge/sleep clothes.  And if you have others in your household, it can affect your relationship with them as well, bolstering your self-esteem and how they view you and your productivity.  Here’s a collage of some of my favorite recent outfits that I liked enough to wear past dinner time (which is really saying something).  You’ll notice there’s a sweater theme going on, as fall is in full swing here in New England.  Give it a try on a good day: Get dressed in something you enjoy and then stay dressed, even if it feels like there’s no reason to.

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Brought to you by: H&M, hand-me-downs, Burlington Coat Factory, hand-me-downs, Old Navy, and Target.

Have a good Friday.  Hope you’re well enough for your favorite outfit.

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Living Incurably in Montreal

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Last week Christopher and I returned from a 4-day trip to Montreal.  I’d like to share some of the strategies we used to limit my pesky symptoms impinging on our travel.  (Okay the day my symptoms are just “pesky” I’ll be jump-starting my career and running a marathon.  At the same time.  You know what I’m saying.)  Basically we had to focus on my illness a bit beforehand so that we didn’t have to think about it as much during the trip.

Until a few years ago when my counselor started coaching me on traveling strategies, I used to just dive into a trip full-on which always resulted in me spending half the trip seemingly distant & grumpy but really just devoting all my energy on staying on my feet. #Miserable  Now, with a more practical outlook, I enjoy traveling much more.  First, a few fun photos of our awesomely quirky hotel, a repurposed industrial building.

We choose this hotel because of its loft apartment-style rooms which allowed me to nap at one end with Christopher still able to read, be on his laptop, etc on the other end.  Or vice versa, when I’m up with pain at night.  I loved the large open space with sleek modern furniture.  Even riding the elevator to your floor was a memorable experience.  Their industrial-sized lift was decorated to look like a little parlor.  Heres a 1 min 20 sec video:

Now during a past cold-weather trip, I neglected to protect my face from the sun and ended up with a nasty photosensitivity rash.  This time I came prepared with a cold-weather hat with a brim.  Worked great.  (Holla H&M!)

We  also limited ourselves to 1-2 objectives each day.  I believe strongly in the magic of spontaneity, but sometimes it lands you far away from your hotel, never having seen anything interesting, extremely hungry and without anything to take your medicine with.  So we did a little planning each morning and improvised as we wished along the way.

Here I am  at the mesh-like globe that housed the United State’s exhibits during the World’s Fair of 1967.  After returning from our trip, I found out that back then both my mother and my mother-in-law were there, which made me feel all warm and fuzzy inside.  We also passed on the adventure of a long Metro ride and opted for driving our car for this one trip.  This way we could park across the street instead of walking 20 minutes from the Metro stop.  I will have to make amends to Mother Nature some other, more illness-friendly way.

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On the following day we took a break from walking and got tickets for a double-decker hop-on/hop-off bus.  Not only did it take you to all the interesting places of the city but your view was from a second story perspective.  At one point I dozed off (#SleepDisorders) but no one except Christopher noticed (#BigSunnies).  I’d be up for a ride on one of these in any future cities I visit.  Tour companies: I will happily review YOUR tour in exchange for complimentary tickets.

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It was a great trip, really liked the city of Montreal.  Oh right…we also got MARRIED!  Hit the town clerk’s office of the last town in Vermont before the Canadian border, just the two of us, just the way we wanted.  #KeepingItReal #Happiness #Love

I hope one of our traveling strategies (and maybe even eloping!) helps improve YOUR next adventure.

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Living Incurably On A Budget: #YardSaleNinja

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After I recently started following the blog/Instagram account Fun Cheap or Free – Where Frugal Gets a Facelift, I’m feeling less embarassment about my constant quest for low-cost goods.  Christopher’s daughter is always amazed that I can remember all the prices in our local grocery store and am constantly comparing them to other stores/sale prices.  My brain is just built for that kind of comparison shopping, I guess.  I wish I could remember names that well.  Among many others, past posts of mine about living on a budget include:

My favorite two free digital magazines 
A $42 TINNITUS MASKER VS. THE PRESCRIPTION $2,400 ONE
What an absolute bargain your local library can be
Thrift storing

Today I’m going to brag about all the yard sale bargains I found on a recent Saturday morning.  My friend Kate drove, loaded my items into the car, and then hauled it into my house for me.  #ShesTheBest   This was my first time intentionally yard sale-ing.  I printed off a list of that Saturday’s yard sales (best time to go I think) from our local newspaper and then organized the list by neighborhood.

 Maybe treat the day like a trip to a casino; bring $40 cash and that’s all you’ve got to spend.  And with all that money you’ve saved, make sure to go out to lunch.  Yard sale-ing is tiring work, you’ll deserve a treat, right?

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