Like all of our question series we answer everything separately and don’t read each others answers till we’re all done writing – keeps it more fun that way. What causes our symptoms to flare?…
Here we go!
Em: Sometimes you can’t really avoid crashes no matter how careful you are. For example, a run-of-the -mill virus that is going around and giving everyone a rough couple days might give me a rough month. My cardiologist once told me, “if a normal person is sick for 3 days, expect to be off for 3 weeks”. Because Lupus gives you an overactive immune system, I am always aiming at trying to get mine to calm down; catching a flu and sending it into overdrive is the last thing I want. What brings on crashes and for my symptoms to flare me are the following: stress, lack of sleep, overexerting myself/over committing, and viruses.
Obviously, some of these are out of my control and while I can wash my hands often and try to be good about germs, sometimes getting a virus is simply unavoidable. The factors that I can control are sometimes hard to as well. Knowing stress is going to make my condition worse is something I stress about on it’s own! Since stress is inescapable, I try to be diligent about removing myself from situations that are causing me stress, like a dramatic relationship (of any kind) in my personal life. Much like learning that sometimes it’s okay to end a relationship if it’s causing you harm, I learned that saying ‘no’ to an activity is an okay (even necessary) thing to do as well.
As much as I would love to say yes to everything and never plan for downtime, I know that if I do this, my body will end up paying. When I feel bad about my limits or inability to do everything I may want to, I try and reminder myself that I’m not being selfish, I’m just respecting my body and putting health first.
Kate: One of the main issues that I find people having a hard time understanding about my list of diagnoses is how one minute I can act and seem “fine” and the next minute I’m too sick to do anything but lie down which results in a LOT of canceled plans. I like to think of myself as having one of those little levelers (you know the kind with the green liquid in the middle that you use to get a picture frame straight). It’s a very delicate balance trying to keep the green liquid in the middle area and well, that’s kind of how I feel it is with keeping all of my symptoms in check.
I’ve got to stay on a tight routine so I don’t crash too hard. Some things I know are out of my control and I’ll have bad days that are inevitable but I try to keep my triggers as limited as possible. For me, what I put into my body plays a huge role on how I feel. If I don’t drink enough liquid (especially when I first get up in the morning) my whole day feels like I’m majorly slumping. Same goes for food. Like most people with POTS and autoimmune problems I have GI issues (gastric emptying) as well. If I eat slightly over my “limit” I feel sick and symptomatic but I’m also very hypoglycemic so the same goes if I don’t get enough in me. Like I said it’s a total balancing act.
Another trigger that causes my symptoms to flare is how much I exert myself vs how much I rest. If I know I have plans coming up or an event I try to allocate downtime that will allow me to get back to that “middle level”. Most people with the same conditions as Em and I also have a hard time regulating their temperature. So for me, the heat is another big no no. I feel practically useless when it’s hot out and my symptoms feel so out of my control. I’m definitely not “a lay in the sun and get my tan on” type of girl but for the days I can’t avoid those rising temps, I try to keep an iced water bottle with me at all times and a cooling cloth that I can put around my neck (it makes a bad situation a little bit better).
Not getting enough sleep is another big trigger that causes my symptoms to flare. I’m not a good sleeper and I go through really bad phases of being unable to fall asleep that creates a perpetual tiredness that turns me into a zombie. Unfortunately, I’m still trying to figure out how to navigate that one…suggestions welcomed!