I got home from work, sat down and immediately started writing this blog. I wrote it, and then published it only in the POTS groups and forums that I belong to…then I thought, why wouldn’t I share this with EVERYONE? If this blog is an outlet for me AND an avenue for me to spread awareness…REAL awareness, then why am I sugarcoating the truth when things get bad? Why am I holding back and only sharing with others who have my illness? The more I thought about it the more I realized that it might make me uncomfortable to be so raw, and it might make others uncomfortable to think of me this way…but ya know what? Too bad! Let’s all be raw, real, uncomfortable and HONEST together. It’s the only way to truly share this experience. So, I came back, added this new beginning, and I’m sharing it all with you…it’s not pretty (as chronic illness isn’t), so don’t say I didn’t warn you!
So, this is how it’s going to be, life? I’m one of the lucky ones who gets to deal with an illness that doesn’t ever go away? Okay. I’m okay with that. I can deal with it. But, you know what? My kids can’t…and they shouldn’t have to! They shouldn’t have to have a mommy who loses her sh*t over nothing because she’s in the middle of a flare and just cannot fake it anymore. That’s a pretty crappy mommy to have…and I hate that part of my illness…and that part of myself.
I’ve been trying not to accept the fact that I’m in a flare and feeling lousy. I’m exhausted and dizzy and battling a continuous migraine and overall just feeling like complete crap for several days. I can start to feel the depression and the desperation creeping in because let’s face it, going from feeling semi-okay to flaring is enough to make the happiest person feel pretty damn low. I’ve spent my days teaching, forcing the fluids and the meds so I can try and resemble a normal person. I plaster on a smile and keep moving through my day. My BS tolerance level is at an all-time low right now…which in turn has made me tighten the reins in my classroom…instead of having my normal “let’s figure this out” attitude…I’ve had a “cut it out and act like the juniors and seniors that you are!” attitude…yea, I’m probably not winning any popularity contests with them this week! The bottom line is by 3 pm I’m spent. I’m toast. I can’t handle ONE more thing. I just can’t. So, today when my 6 year old got off the bus and left his gloves in my classroom…I got home and freaked out. Is it a big deal? No. Not at all. It’s just gloves. Did he deserve it? No. Absolutely not. I just couldn’t handle ONE more thing. When my fully potty-trained three year old refused to go to the bathroom without me because she was digging in her heels, I freaked out. Was it a big deal? No. Not at all. She just wanted some time with her mommy. Not a big deal at all. I just couldn’t handle ONE more thing. I just needed a minute to sit down until the dizziness passed. She looked up at me with her huge doe eyes and I totally broke down. I cried and cried and cried. I apologized to them both over and over and over and over. I told them that I was sorry and I was just feeling sick. Is that the truth? Yes. But, do you think they care why I raised my voice at them? Nope. And I’m still heartbroken over it. The illness took over…it won…and that’s just not okay. Even as I write this I feel absolutely horrible and the tears are flowing. My children should not be victims of this illness too…it’s just not fair.
I hate having POTS. I hate everything about it. I hate feeling this sick, I hate having to explain to people why I’m so tired, so pale or so groggy. (and ps…it’s super rude to tell someone who has a chronic illness that they look sick, or tired, or pale, or not themselves!) I’m sick of having to say “well, POTS stands for…no, I’m not talking about marijuana” I hate it. I hate that people seem to forget I’m sick sometimes…sure it’s not something that should be talked about ALL the time…but just because someone has an illness you cannot see doesn’t mean it’s not there. I just hate that. I hate it when people say “you were doing so well, what happened?!” Well…this is the way my illness works…it’s up and it’s down sometimes for no rhyme or reason. It just is…and I hate it. Instead of asking me that…please people, just say “I’m sorry you’re not feeling well, can I help?” By bringing up how well I was doing only makes me feel sad…and makes me feel like I have to rationalize with you why I’m still sick. I just am, and I hate it. POTS and any other chronic illness for that matter, just really, really suck sometimes….and you guessed it, I hate it.
I know the sun will shine again…and all of that other warm and fuzzy stuff that I usually say…I know this is just a flare…and I know that my kids love me and they will be okay. But, for now…for tonight…I’m just sad, defeated, and feeling scared that POTS is starting to take over again…(not going to happen on my watch)…but for tonight, I’m just going to hug my kids…and cry it out.