Monday 12 March 2012

No Need For Padded Walls: Staying Sane With Chronic Illness

Guest post time: After yet another unsuccessful attempt at scheduling posts here's hoping third time is the charm. For those who sent well wishes, big thanks and love to you all. My youngest made it through surgery and is now sporting a rather fetching, if fetid full leg brace. It's been a looooong week and a half and my exhaustion is at a point where I'm not really sure if I'm awake as I type. Fingers crossed this isn't a bizarrely bland dream and I am actually managing to get this posted. Or if it's a dream, a shirtless Jensen Ackles will soon be in too give me a back rub and make me margaritas as I type.

Either way I am still down for the count, so the guest posts will be rocking out for a while yet, whilst I try and nurse my body back from death warmed up, to death slightly more warmed up.

First up we have the fellow scifi geek and all round rockstar after pointing me in the direction of a Firefly themed Pintrest board, Claire Foust Martin. Claire is a "scuba diving marine biologist turned floral designer, turned chronic illness ass kicker. Mom/wife/blogger & fighter for patient rights for POTS & Dysautonomia". She can be found regularly blogging at STOP POTS Virginia, and her personal blog Bye Bye Bella Flora

 No need for padded walls: how to stay sane with chronic illness. 

Fourteen , count 'em - FOURTEEN - months either at home or in the hospital/doctors offices for me, with no social outings.  And I'm not the only one, or even close to the one with the longest record of time spent indoors.  I had been feeling a bit overwhelmed by the lack of outdoor time, and constant focus on my illness, my kids (with no break), and searching for ways to get better.  Life is about balance (insert "oooommmm" yoga zen breathing pause for effect here).  Even if you are not completely bed or home bound such as myself, you may be severely limited by your illness, and going a bit bonkers being indoors more than the average healthy person, not to mention being sick.
So how the hell do we all stay sane?  I REALLY want to avoid the padded walls of a psych ward, even though the padding wouldn't do much good - as I can't walk far enough to run into them.  Padding on the floor would be great though, in case of random face planting incidents. And as sexy as helmets can be - I'm trying to avoid those too.  But just in case, here are a few stylish options, for those of you that unintentionally share my love of hugging the floor and have a fear of the sharp hard edges found in bathrooms:

Pretty bike helmets...but kind of boring.

Bobba Fett's helmet, which I prefer - mainly for dramatic geek effect if found on the ground by anyone.


The MEGA NERD and hostile option - a Cylon helmet, with a pointy menacing looking top to impale obnoxious medical workers.

So here are a few tips to finding some balance, avoiding the padded walls, padded bed railings, various helmets, or being strapped down in a straight jacket for going nuts from the isolation and confinement of chronic illness:
1. Get online and find support.  This has been the biggest help for me - finding facebook groups, blogs, twitter friends, awareness groups with forums - and start talking and meeting others.  Just knowing you are not alone is amazing.  Many groups (including my site, STOP POTS Virginia, and the non-profit I am involved with, The National Dysautonomia Research Foundation) are starting up Skype meet ups.  Skype is free, and allows you actual face time with other people with your illness.  POTSgrrl recently did this very successfully as well.  Our Team Fight POTS Facebook page is also an easy tool to find online resources, and features many excellent bloggers and links to other pages.

2. Of course there are the standard reading, TV, and movie options - I find that I have become completely burnt out on TV, so I take days and marathon my favorite movies and shows that I have on DVD.  They are usually on in the background as comforting noise.  Hearing "Take my love, take my land, Take me where I cannot stand, I don't care, I'm still free, You can't take the sky from me."  relaxes me and if I need to lay back from whatever I'm doing, I know that Captain Tightpants is gracing my TV while I take a break. (This is a Firefly reference for you un-nerdy folk). 

3. Help others. In my current state, I feel like I am taking and taking and taking - and not doing much giving. Relying on others constantly for support is a real ego blow, and makes that whole "productive member of society" thing kind of tough.  Start a blog, volunteer online, post dirty pictures for poor lonely soles...wait...don't do that, but - you get the idea.  Finding a way to feel useful and helpful to others is proven to increase self esteem, take your mind of yourself and your illness.  It always reminds me that there are many people WAY worse off than myself.

                                         Star Wars peg people!

4. GET CRAFTY.  My hands aren't working too well these days, and I know many other dysautonomia peeps deal with the same thing (and all the other muscle affecting, flaccid finger inducing illnesses do as well).  This has been tricky to figure out - but Pinterest has become my new best friend.  There are loads and loads of links and pictures of crafts on there - and I weeded through many to find some that will work from bed, are cheap, and I can do while my infant is sleeping, that I also can put down and easily start back up when I feel well enough.  I am embarking on painting peg people, and can't wait.  I plan to make Storm Troopers, Jayne with his famed hat, a few Superheros for my son, and maybe a fairy or two for my daughter.  Definitely Princess Leia for my daughter though - have to start her young (she's 6 months old).  And maybe a soccer player for my husband. I'm WAY to excited about these peg people, but that's the point.  You may even get crafty enough to open an store and sell your goods, or sell them and give part of the proceeds to your favorite charity.
5. Get dressed, put on some make up, and maybe do something wild and crazy to your appearance.  I just dyed my hair a crazy shade of maroon (it was supposed to be purple-ish, but my hair had other plans). The act of dying my hair left me bed ridden for days, but was totally worth it.  Since I am no longer working in a professional environment, this was my middle finger in the air rebellion at commonly accepted hair colors.  It may seem lame, but really was empowering. I love it. And everyday I am able, taking the time and expending the energy to put on real clothes, and maybe even some makeup - even if I'll just be laying around the house makes me feel less sick and more "normal".

 I'd like this little nook somewhere in my house.

6. Last one!  Make your environment the most comforting to you as possible.  If that means you are stuck primarily in one room, try to get help, or do a little every day, to make it the best, happiest, coolest, or whatever adjective works for you - place possible.  Some people like zen, some like organized, some like lots of greenery.  Make your favorite or most used space (indoors or out) the most happy place you can, so you can literally go to your happy place.  I love color, plants, and things to be organized.  I had to explain to my husband why the chaos of having drawers left open, or things not in piles drives me nuts.  And I need to be as un-nuts as possible, and boy is he is on board with that.   We are moving back to our old town home that we own (and can paint), and our bedroom will have bold colors on the walls, because they make me happy.  The white walls of our rented apartment near my hospital have been tough, as I HATE white walls. So they are covered in pictures and colorful things for now, and we keep the room neat and organized.  It makes a huge difference for me.
Do you have any tips to help others stay sane while battling chronic illness?  Post them below!  Would love to hear your suggestions.


  1. im constructing my ideal space to sleep in right now! thanks for writing a great post.

    michelle, i hope your son got through the op without too many complications, and wish him (and you) a speedy recovery. xxx

  2. My name is Claire, I also have POTS, AND I LOVE FIREFLY! And Star Wars. And this post. Thanks for sharing!

    I whole heartedly agree on the crafty thing - I sew, and it is seriously the only thing keeping me from a mental break down. It reminds that I can do something worthwhile, and gives me a chance to do something for others as well as myself.

  3. Oooh I like that little nook too! I want that to be my bedroom!

    Good tips too : )


  4. Great tips! I find myself constantly having to come up with new and random easy crafty projects to keep myself from going insane. I taught myself to knit and crochet, which helped, but apparently I am a bit obsessive and did it so much that I got severe tendonitis in both wrists and had to wear wrist casts for almost a year! So, I guess knitting can be dangerous after all...

  5. From another POTSy, if you even have remotely considered a helmet because you're dizzy and falling so much, get one. Concussions aren't anything to mess around with.

    I was very reluctant to get a helmet initially, but I now wear a helmet when I start to get dizzy or will be in a situation where I'm prone to passing out. I'm wearing it only at home for now, but have carried it in the car on outings. For me, the thought of wearing it in public causes me to be a bit more cautious and honest with myself about how dizzy and weak I'm feeling to avoid needing the helmet.

    It's actually been a confidence booster, both for me and my friends/family. It's taken some of the fear of falling away and my friends and family aren't treating me like I'm made of glass when I'm wearing it.


All who are lovely enough to comment should be showered with cup cakes, glitter and macarons. I promise to use my spoon bending mind powers to try and get that happening for all who are lovely enough to share their words. Those who go the extra step to share posts should really get a free unicorn. Or at least the gift of finding the shortest and quickest line at the supermarket on a regular basis. xx

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