Situaton: POTS Saline Treatments take between 3-5 hours where you are practically immobile and there’s nothing to do.
Solution: Movie Time! Like many P.O.T.S patients, and patients with other infusion needs, I spend a good deal of time hooked up to an IV getting saline, vitamins, and god knows what else (actually, I’m pretty sure that’s it.) Because I get IV’s so often, my veins come and go—and so when my doctor actually finds one that works, I have to be extra careful not to screw it up. So that means no moving. So while some patients may be able to occupy these hours with things like knitting, or crafting, or arm wrestling—I don’t have that luxury. So instead I do pretty much the only thing I can: I illegally download movies and tv shows and watch them on my laptop.
Not sure how to download shows illegally? You can purchase them to watch on your computer at amazon.com for usually less than $1.00.
Situation: It’s Black Friday and you’ve got four more stores to hit up before you can take a breather. Your spoons are running out, but you have to keep going.
Solution: Good planning is the key to making the most of your energy. Despite our best intentions, we can’t always work around our limited energy. If you can’t fit a break into your hectic schedule, you have to work with the pain and fatigue in a different way. Here are a few tools to work with
- Plan for an Adjustment – Once in a while I have to clean the floors, bath the dog, and bring the laundry up the spiral staircase. These activities wreck my body, and as innovative as I’ve tried to be with finding ways not to break my back doing them, I still usually end up sore. I usually try to make a same-day appointment to see my chiropractor. A small chiropractic adjustment goes a long way in resolving pain and rejuvenating you for the rest of the day.
- Dress for Success – if I know I have a long day ahead, I’m not going to put forth the effort to make myself MORE uncomfortable by wearing tight clothes, a pretty but unsupportive bra, and heels. A normal “busy” day for most people isn’t an athletic activity, but for people with chronic illnesses it can be. So outfit your wardrobe with some athletic inspired outfit options. They’ll cool you down, support your weaker parts, and make you look good while you’re wearing down.
- Aching Feet – Lots of walking involved? If you’re too embarrassed to use a wheelchair or electric scooter (which, as someone under the age of 75, I am.) invest in some socks from Earth Therapeutics. These Gel Booties make me feel like I’m walking on Jello. Rad.
Situation: Vertigo has you spinning around the room. And now you have to take an elevator. Awesome.
Solution: I’m an avid spinner. Vertigo has been a constant problem for the past few years and while Meclizine works wonders, it doesn’t always completely solve the problem. I have found that Ativan does the job in bad spells. I’m also a fan of SeaBands for the ensuing nausea. Elevators are a bitch, but for whatever reason, and I can’t back this up with scientific evidence—but covering the right side of my face and applying pressure helps for me. (Any clue why that is, or just a random anomaly?)
Situation: I’m home. I’m alone. I’m dizzy. Uh-oh.
Solution: I have this terrible fear that I’m going to have another (because yes, this has actually happened) situation where I’ve fallen and I can’t get up. Go ahead, laugh it up.
But my apartment is tricky. It’s two stories with a spiral staircase and hard wood and tile floors and the chances of a person with heart issues, vertigo and fatigue having a whoopsie moment isn’t exactly unthinkable. So what’s a girl to do? If I’m feeling particularly concerned I just keep my cell phone on me—in my pocket, not my hand, so I don’t accidently leave it downstairs when I’m upstairs. There’s always someone I can call to come and pick me up off the floor—and all those people already have keys to my apartment. So phone + spare keys = you never really being alone.
I hope these tips actually help! I got a lot of responses when I asked the P.O.T.S group on Facebook what their most inconvenient problems were when it came to their illness. These were some of the more day-to-day issues, but I’ll be doing another post addressing some of the more difficult/social problems associated with chronic illness. One of them was how to deal with family who doesn’t believe you’re really sick.
And I wanted to come up with a really quick and easy response for that. Because I can guarantee you that every single person with a chronic illness is now, has before, or someday will deal with a family member who genuinely believe that they are an attention-mongering, hypochondriatic, self-centered patient whose illness—it’s just all in their head. But there really isn’t a “quick and easy” fix or a perfect comeback–so I’ll be discussing that in an upcoming post. Feel free to leave your tips/advice in the comment below!