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.
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Bobba
Fett's helmet, which I prefer - mainly for dramatic geek effect
if found on the ground by anyone.
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The
MEGA NERD and hostile option - a Cylon helmet, with a pointy
menacing looking top to impale obnoxious medical workers.
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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!
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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 Etsy.com 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".
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.
-Claire
