Thursday, March 22, 2012
Tuesday, March 20, 2012
Friday, March 16, 2012
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.|
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.
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!|
|I'd like this little nook somewhere in my house.|
Do you have any tips to help others stay sane while battling chronic illness? Post them below! Would love to hear your suggestions.
Tuesday, March 6, 2012
So I have been chatting with my husband about what to tell the paramedics if they show up and I'm unable to talk. But it's a lot of info! And what if I'm alone with the baby? This terrifies me, especially in light of all the recent new allergies I seem to be having (MCAD anyone???).
I've been searching companies that produce ID bracelets and such, so here is a brief listing for those of you that may need one. Even if you just have food allergies - these can save your life!