I haven’t posted in forever! That’s because I’ve had things to do each week and weekend. Typically, my social life is one family event a month, one or two medical visits, and the rest of my energy goes to existing, hanging out at home with Jake, and playing with Emma when she comes. Up until a few weeks ago, I hadn’t even seen my best friend who I live 15 minutes from in 8 months because I never had the energy for visitors or going out to lunch.
This past 5 weeks or so, I’ve been very busy. My sister is getting married in Mexico in less than a month (yay!), and I am a Maid of Honor who does no Maid of Honor duties. I am so thankful for her best friend Jaci, my second big sister, who has fulfilled my duties without any of the glory! When I even mention how awesome she is, she rolls her eyes like I am ridiculous for thinking she needs thanked. We’ve had two celebrations for my sister. Three family members had birthdays and get togethers, one of them being Jake. I tried to organize a birthday party for him to the best of my ability. My inability to remember or concentrate made that a bit challenging, but it turned out nice! I’ve also been having all sorts of appointments and testing, several requiring 1-2 hours of travel time each way. I will write more about that in the future when I have a better idea of what is/isn’t going on. If you see me in person and are curious, feel free to ask — it’s not a secret, I just am waiting to write it out on here. Oh yeah, I also moved to my parents house for 2 weeks to try and rest up then back to my house again. That is a story for another post. Despite having so much help from other people to get me through it all, I used several months worth of my “spoons” in just 5 weeks. I became more and more wore out, and by the end of last week, I was requiring my full Adderall dosage to function (usually I take 1/4 of my dosage).
The past week I have been very forgetful — enough that Jake notices, enough where I forgot who Matt Damon is, enough that I actually can barely remember my sister’s first wedding shower. I am also almost constantly nauseous, experiencing pre-syncope way more than usual, having more fevers, more pain, and just overall, I am not comfortable. I am 100% certain if I didn’t have my medications, supplements, and biofeedback training, I would have ended up in the hospital again by now! Luckily, my illnesses are managed better now than they used to be and I have all sorts of tricks in my bag. My fluids order is different than it used to be, so getting them now takes 2-3 hours for ONE liter This makes me inclined to wait until I am next to deaths door before going to get them because it’d actually be quicker to just go to the ER than get my standing order performed. Grrr…. I am hoping to fix that situation at an appointment in May.
So, in a nutshell…
I constantly feel like this:
but the cool thing is…
thanks to the magic of industrial strength makeup and a curling iron, I can occasionally look like this:
Some people who are chronically ill hate it when people say things like, “Well, I’d never guess you are sick — you look so pretty!” I don’t hate it. I think the reason some people who are ill hate it is because they feel the person giving the compliment is minimizing their illness. I don’t feel that way and I don’t feel like anyone close to me in my life believes I exaggerate my illness. If they do, they hide it well and they’re wrong anyway, so it doesn’t matter to me. Therefore, I’m thankful I don’t look as bad as I feel and I am sometimes able to pull off not seeming as sick as I am (some of you cannot be fooled). I mean, if I’m going to be sick, I feel lucky that at least I can still look nice. I’ve always been known as a “smiler” and someone who can laugh even during the worst of times. Being sick hasn’t changed that and I don’t think just because I am uncomfortable means I have to look like it all of the time. I still have more to smile about than I have to complain about, so I am going to continue smiling. I suppose the last three sentences sum up how I chose the name of my blog!
Often, conversations are the area where how cruddy I feel shows irregardless of how I look. By the time I get to a family event, (especially if I’ve done my hair beforehand), I am not the best conversationalist and that cannot be faked, but that’s alright I guess. Often, when I am thinking back to conversations I had, I realize my response didn’t really answer the person’s question, didn’t make sense, or sounded uninterested. I will think of a question I would have asked if I’d been thinking properly. It’s very annoying because I love catching up with everyone! Just know I’m not aloof, my brain is just deprived of oxygen. I think I do my best communicating via text, messaging, or e-mail because I can lay flat while I do it, I have time to think, and I can come back to it when my brain is cooperating.
Well, that’s all for now. I am hoping to write more posts this week. I get to rest this week and I will get to rest in May. Until then, I hope my body keeps on working as incredibly hard as it has been!
Oh, and to finish the sentence in the title of my post:
“When people say I look pretty… I say thank you and feel thankful I don’t look how I feel.”