Wednesday, May 4, 2016

Too Many Tabs! A "Life With Chronic Illness Walkthough"

Hi! I'm the Purple Goddess, and I have Ehlers-Danlos Syndrome, Dysautonomia/POTS, Mast Cell Activation Syndrome, Chronic Fatigue, and well, you get the picture. EDS is from my genes, but the rest of it all hit me hard after I suffered a concussion in January of 2012. Trauma can really kick illnesses and their comorbidities into high gear, and that's exactly what happened to me.

Part of my picture in living with these diseases is that several of my symptoms can rear their heads, and even take over, on any given day: brain fog, severe bodily pain, anxiety (and I mean Take Me Down and Render Me Helpless level anxiety, not just 'I worry a little'), to name a few. Also just for fun: the possibility of anaphylaxis from any number of sources at any given time. Thus my being homebound. It's not safe out there for me!

When I'm down, all those tasks that seem to take no effort at all (for able-bodied folks), like making phone calls or ordering glasses or reading articles or any number of seemingly small jobs - those tasks start piling up in a huge neverending to-do list, which on my computer looks like having a billionty and three tabs open at all times.

Why so many tabs? Having a chronic brain injury or even chronic brain inflammation caused by other things can really wreak havoc on a person's memory. So if the tabs are open in front of me, I will not forget to address them (eventually). Mostly. 

When I have 'Lucid Days', as I have taken to calling them - that is, days where I can actually think clearly and I don't feel anxious (at least within the comfort of my own home) and my pain is at a level I can still function within, and I even have a few spoons, I am all of a sudden struck with the urge to doallthethings! Because it's now or....who knows when I could have this lucidity again. Take advantage!

After a really long flare that lasted what I think was weeks, I am having a 'Lucid Day'. 

Today after I:

  • unloaded the dishwasher
  • got all the morning smoothies and supplements together for everyone (I always do this, even on my worst days, because I put a system in place to make it part of routine no matter what, so I can)
  • finished mending a quilt and re-quilted some of it

I sat down at my computer to do actual work and not just stare mindlessly at random comedies I find. 'Work' for me starts with investigating all of these random tabs I've got open awaiting my attention. And then somehow, (see: adult onset ADD caused by chronic illness), I ended up writing a blog post (or three) for the first time in.....two months. So here we are on the topic of Too Many Tabs (A Life With Chronic Illness Walkthrough). 
Dare I list what some of these tabs are?

Well, I'm going to. This is helpful for ME to process my process, so I'm making the list:

  • my email, always open
  • three Amazon tabs open as I investigate the possibilities of replacing my husband's Vascuzyme with the individual supplements as a cheaper option (and notes in my notebook with ingredients and costs as an adjunct to this one)
  • a Google calendar tab next to a blogger tab with the blog of lots of cool things to do with kids in Portland this month (which for the record, I will often put several of these events on the calendar and for a myriad of reasons we rarely ever attend any of them - but I like to hold out hope anyway)
  • my zennioptical page with my order half finished, that has been open for days, because I cannot get past the types of coatings to order (too many choices, I'm not entirely sure which ones to order, is this REALLY the frame I want to commit to? brain fog)
  • a page for an RVers social platform that I keep meaning to catch up on
  • the cancellation page on wherein I meant to cancel, but then they offered me three months for the price of one, and I froze up because I didn't know what to do - the offer is still featured prominently on the page, just awaiting my response. (I was canceling because 1) I realized that genealogy research was going to take a LOT longer than I originally anticipated and 2) I've really slowed down on my incessant interest in doing said research as of late, and I'm not sure the interest will reignite soon, especially as the weather is improving and we might be moving into the RV forthwith.)
  • a psychologist I am paying the longest game of phone tag with ever  (I'm 'it') to see if she can treat me without my having to leave my house (it's literally been months since I first called and left a message)
  • a wikipedia page where I was looking up ancestors
  • a couple of recipes for making one's own shampoo and body wash because I seem to be allergic to some ingredients in mine, the very natural one I use that we buy at Natural Grocers
  • a couple of medical marijuana resources and programs I mean to enroll in that could get me discounts on and help with paying for meds (I am allergic to opiates and this is the safest pain relief option I can find, plus dozens of other reasons that could easily have their own blog post someday)
  • The Dan and Phil Tour because my son is a HUGE fan, the shows anywhere nearby are sold out, and I'm hoping they will add another close by that I can take him to
  • These articles:
  • these articles: 11 ways to make body wash, and this body wash recipe, and also this one. (you may be thinking, "Sheesh, how many body wash recipes do you need?" But I do a thing with recipes where I combine one or three and make them my own. 
  • This delicious looking recipe for shoestring sweet potato fries that we are going to make this week. And by 'we' I mean my tireless (i.e. exhausted) husband who cooks for us now, in addition to literally everything else
  • my RV Repair and Maintenance Pinterest Board because we have some things that need doing on the RV so I was looking up some stuff for my husband
  • four Craigslist tabs with motorized wheelchairs for sale
  • my swagbucks page open to an image search for sloths (I get points for searching there, which I can redeem for Amazon gift cards)
  • two tabs explaining the differences between eyeglasses lens tints and what they're good for
  • this, the tab I'm blogging from
This is what happens though. The onset ADD that develops with an onset of the full impact of chronic illness, because there are so many things you WANT to get done, WANT to accomplish, and they end up taking sooooooo much longer because they can only happen when you have a "Lucid Day" and the spoons to do it. (If you haven't heard of or acquainted yourself with "The Spoon Theory",  please hit up that link and do it now. It gave an easy relatable term to a whole community of "spoonies", or those of us with chronic illness.) And then your brain does NOT know where to focus, because there are SO many things that need doing RIGHT now! Because everything becomes a priority when you have to make it wait for you to be able.

The goal is to get those tabs back down to a much more reasonable level. Check them off the list. Disappear some of them. That was my goal today. I DID manage one of them before veering off onto my Blogger tab, which by the way, I opened  a NEW tab for, so really, at the start of the day this one wasn't even here. I ADDED one. Ha.

But I DID manage to get past what has been holding me back from ordering my glasses for longer than I want to even admit. Weeks. Months even, really.

I picked out the frames I wanted. I had my prescription entered into my account. I got the page on the order that offered different coatings, and there is where I got stuck. There were just so many options, and I could NOT figure out the differences between the coatings. I kept reading them and rereading them and they just were not making enough distinctions for me to really GET the distinctions, or differences between them.

The difference is, today, I was lucid enough to see that there was an option to chat with a representative online, and I was actually able to articulate to them the questions that I had about the coatings. And I got through it! You may not know it, but that was a BIG accomplishment. A feat of wonderment. I'm serious, too. It was a Big Deal. 

 So I did that. One tab down. Hopefully I will be lucid enough for long enough to knock out a few more. Each one is a feat like that, for its own reasons. But each one is conquerable, in its own time, if I can just get to it, which is a mountain in and of itself. 

But today I conquered a few of those tasks that have been piling up. And I know enough now to take the time to enjoy and celebrate each one, no matter how seemingly small. Because in the world of chronic illness, nothing is small anymore. Everything is a Big Accomplishment. And today, Achievement Unlocked! 

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