It’s summertime and the livin is easy…unless you’re a patient with heat intolerance, then livin is easily burned like an ant under a magnifying glass. It’s a good time to talk about what we’ve done or tried that has helps us get through the tough days. Here’s my list which I like to call:

Patients first, dignity last

1) Survival of the Fittest Pants.  Need to go out but can’t stay standing?  Many doctors & patients have said compression pants & socks help with NMH/POTS.   Guys: need a reason besides Halloween to wear tights?  Girls: need a reason to not shave your legs? You’re freakin welcome.  Brightlife Direct carries affordable compression hoisery.  For extreme NMH/POTS, a G-Suit (worn by pilots) saved this patient’s life.

2) Chrome Your Dome. Guys: shaving those nappy dreadlocks is a no-brainer.  Girls: if you don’t know how much time & energy this saves, let me tell you as someone that sported a ponytail (it was cold ok?): it probably took at least 30 minutes a day to do, wash, dry, and bat furiously at random hairs on my face.  I once told my ex-gf I’d find her more beautiful if she chromed it (inside-out beauty combo smash!).  I meant it, and she was no Nat or Demi.  If a girl shaves her head while keeping herself presentable, I wonder if that would weed out the whistling sharks & let in a whole new male demographic. Do it and let’s find out!

3) Don’t Have Unprotected Breaths.  For some unfathomable reason, some people with respiratory infections think “get some fresh air” means “go out in public and infect others.”

Sucky immune system? protect your nose!  Don’t wanna scream “Hi I’m Infectious” wearing a face mask?  Try a nasal filter.  I’ve tried multiple nasal filters but they always end up slipping with a runny nose.  A patient told me he can wear filters from Filter Your Life all day and not get a runny nose.   I also use this super potent Super Good Stuff nasal spray when I’m stuck near Miss Hack-A-Lungs.

Noise-sensitive, protect those ears!  Bose Noise Cancelling Headphones are not cheap by any means but I can’t tell you how many nights they meant the difference between sleeping/not sleeping or staying/not staying in a public place.   Another patient told me the same.  The QC 15 is much more effective than the QC 3 and is also the most comfortable contraption I’ve ever worn on my head.   For conversations where big ears might be a little rude, I recommend Hearos Xtreme earplugs  which have the highest noise reduction rating of 33, and they don’t make my ears feel raw like most other plugs I’ve tried.  Get blue shoes to match, you sexy Frankenstein you.

4) My What a Big…Keyboard You Have.  Tired arms from typing on your laptop? Go old school and get a cheap USB corded keyboard & mouse (I try to minimize EMFs). Type & click from your lap or other comfortable height. When you walk into your coffee shop carrying a keyboard like a missile launcher because it won’t fit into your backpack, prepare for compliments about how hot you are simmering in nerdy-ness and big accessories.

5) Do The Electric Slide.  When I lived in LA without a parking spot, I bought a fugly electrical scooter to run errands. First it was embarrassing, then eccentric, then I scooted my orange monstrosity on Santa Monica Blvd with disturbing pride. Caveat: don’t use a “budget” model on hills and be wary of getting stranded on a dead battery.  If you need more power and don’t need to carry it up any stairs, I recommend Goped.  Some other ideas: cane/chair hybrids so you can sit anywhere with dignity & Heelys with wheels for zipping through supermarket aisles when no one’s looking.

6) Punch Gravity Back.  I’ve heard from many patients that sitting straight up is difficult. Maybe you just wanna lie down but aren’t rich enough to install a monitor on your ceiling. Try a loungechair like this anti gravity adjustable recliner when you start getting faint and take the middle road to world domination.

7) Nature Blows, So Blow With It.  If your power goes out, you’re gonna need all the ventilation you can get. Got a patio, backyard, or balcony? Sleep outside on a bug bivy & cot. A coleman cot raises you from the hard, cold floor and includes a nice pad. The bug bivy by Outdoor Research is as minimalistic of a “tent” as you can get, and the mesh is thin enough to not let in No-See-Ums, which is really rare.  Why not a tent? Many patients have chemical sensitivities (MCS), and tents are littered with flame retardants which the bug bivy lacks.

8) Hydrate Like a Boss.  If you’re like me and constantly dehydrated, you’ll need a constant supply of water.  Bottled water has BPA & in this weather, will make you broke like Ivan Drago.

Stainless steel mugs & Nalgenes simply aren’t big enough.  Solution: BPA free 2.2 liter (0.5 gallon) water container available at Walmart stores and supermarkets for a whopping $2.50 to $3.00 (much cheaper than Enviro brand).  Side benefit: you’ll look like a hardcore athlete carrying this around, so say you’re returning from a hike.  No one has to know it was from your front door to the driveway.

Disclaimer: I have no financial connection with any of the vendors listed above.  The information in this blog is not advice, and should not be treated as such. You must not rely on the information on this website as an alternative to medical advice from your doctor or other professional healthcare provider.