What Causes our autoimmune and autonomic symptoms to flare up ?

Invisible Illness - Two Being Healthy - POTS - Lupus -EDS - Mast Cell

 Like all of our question series we answer everything seperately and don't read each others answers till we're all done writing - keeps it more fun that way.

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 for 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 & seem “fine” & 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 & 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 & 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 & autoimmune problems I have GI issues (gastric emptying) as well. If I eat slightly over my “limit” I feel sick & 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 for me 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 & 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 & my symptoms feel so out of my control. I’m definitely not "a lay in the sun & 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 & 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 me to “crash”. I’m not a good sleeper & 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!