Good news… This picture from our September photo session isn’t going to be on our Christmas Card, so I could share it with you guys. Don’t you just love the look on Jake’s face? I wish I could remember what Emma had just said because she totally has her “I’m correcting my poor Daddy who is confused about the world and needs me to guide him” face on. The other day when she was sick, she didn’t talk much until Jake said the crocodile in “Peter Pan” was a shark. She just couldn’t let that slide and sat up and corrected him with this same expression.
Okay, now that I worked in my brag… on to the real purpose of this post.
Good News: Please DO NOT congratulate me on this or say you hope it keeps going this way because I am positive it will jinx me. My autonomic nervous system (ANS) as of recent times has been a bit more stable. It is constantly being overworked because of my illness, so keeping myself not nauseous, not dizzy, with proper circulation, etc… it takes conscious effort on my part — but I can do it most days! If you don’t already know this, your immune system is part of your ANS. My ANS is all messed up and doesn’t have anything to spare in terms of resources, so often, my immunity is poor. It seems to me, having a more stable ANS is allowing my immune system to have the capabilities to fight off some viruses I encountered over the recent holiday rather than just contracting them without giving fighting a try. I know my immune system is active because my lovely lymph nodes are swollen. I’m really superstisious about even saying anything here before I’m out of the woods. Man, should I even post this? Hopefully your guys lack of saying “congratulations on this” will allow the Chronic Illness Gods to not be alerted I’m moving slowly out of their grasps.
Bad News: My immune system fighting means my ANS is being worked more than it already is from having dysautonomia and my POTS symptoms are worse than normal. Digestion seems to be okay, circulation seems to be so/so, but nothing can control my dizziness right now. I wish life was easier to live while dizzy. I don’t mind that I can’t do things I would enjoy and am sort of bored all day. I do mind when my dizziness effects others. I just hate telling Emma (SD, 4), “Sorry, I can’t go to the movies with you and Daddy.” after she excitedly asks me to go. She looked disappointed, then looked away from me to hide it because she doesn’t like to wear her heart on her sleeve. She saw me and Jake notice her disappointment and growled at our “aww” faces. She HATES “aww” faces whether they are there because she’s being adorable or because we feel bad for her. I know all kids that age want the people they love, and the people they don’t see often, to do fun activities with them, and will be disappointed when they can’t. Lots of parents have to tell their kids “Sorry, I can’t,” because of work and such. It just is rough when the only reason I can’t go is because I’m sick…. and when me telling her “no” results in her getting the dreaded, “Aww, poor Emma” face. We talked about how she was sick last week and had to rest a bunch and how for me, that is how a lot of my days are. I told her I’m working really hard to get better, and once I’m better, I’m going to go everywhere with her and she’s going to be sick of me. Her and I have lots of special things we do and I know she loves them, but it is hard having to sit at home while your little family is out doing family stuff. I also really hate being in the store with Jake, in a wheelchair, looking at toys Santa may bring to Emma and, after trying really hard for the past 15 minutes to ignore the spinning shelves around me and the fact I can’t really read the boxes, having to say, “I’m so dizzy!!” and us having to leave. That was our fun, couple bonding, get out of the house activity for the week, and my silly ANS blew it for us! Do they pump something into the air at Walmart to make it intolerable to those of with dysautonomia? I’ve never met anyone with dysautonomia who doesn’t have a terrible time at Walmart compared to other stores. Luckily, this is just temporary while my immune system is in overdrive. It used to be my life almost every single day.
Good News: I have lots of family who welcome us into their home to celebrate the holidays. Unlike last year, I think I’ll be able to stay at all of them for the full time (or at least long enough to not feel our time was cut short) and enjoy them a bit more. I probably won’t spend my entire time at each gathering thinking about controlling each symptom and continuing to sit up, talk to people, etc… I think I’ll be able to just sort of exist without thinking super hard about it, at least for the first gathering or two. I also probably won’t spend my Christmas Eve throwing up. (Again, let’s not jinx me here). This is improvement and a pretty big deal! I also feel like it is great how my family (both my side and Jake’s side) understand I sometimes need to lay down during gatherings. It’s good news that I no longer feel awkward about this and just accept it as something I need to do. Last year, having to lay down may have been on my “bad news” list, but it no longer is. I’m lucky that some of the time, laying down can refresh me enough to not need to leave places early. It’s not as though I come out of the room a new woman, but I come out a bit more in control of my body. At Jake’s side on Thanksgiving, there was a quiet room I could go lay down in if needed at his aunt’s, and of course at my Mom’s house, there is always a room for me. Christmas will be no different!
Bad News: When I’m doing excellent, it is difficult to do one or two family gatherings or “outings” a month. The holidays means that within 12 days, I will have 4 engagements. Never at any other time of the year, would I schedule 4 things in less than 2 weeks! This month also requires more planning of energy than other months for things like decorating the Christmas tree, making ornaments, and wrapping presents. I will want to make Christmas magical for Emma, so that in an of itself is sort of an engagement. Nothing beats a little kid on Christmas! They are so excited and thrilled and full of wonder. I remember last year, as I watched her open presents, I was focusing so hard on letting my expression/body language show how heartwarming it is to see her so happy, and not to show the fact I could hardly sit up, that I was nauseous, that I was achey, that the room was spinning, and so on. I don’t know how successful I was, but I really, really tried. How magical would your Christmas morning be if you looked over and your step mom just looked miserable and like she was deathly ill? Not very magical. So I just acted like I wasn’t sick as much as I could. I said “ooh” and “ah” and played with the toys with her that Jake and I had spent the last month picking out. As a result, I remember feeling awful, but I also have memories of having the Christmas morning I’d envisioned. Anyways, I guess the bad news is I really look forward to seeing family and creating Christmas traditions/memories with my young family, but my body won’t respond well or let me do it how I’d like — it is just a fact. However, if my body sticks to the plan, it should be less difficult than last year. If each year is better than the last, I suppose I’m pretty lucky for a chronically ill person.
Good News: Let’s end on some good news unrelated to my health. Some good news is I delved deeper into the world of Fair Trade. I got curious and took the step to educate myself quite a bit about the unpleasant truths of modern day slavery and factory conditions overseas. While not all of my gifts I purchased are made by people paid fair wages (I’m looking at you Disney and Mattel, makers of Barbie), the gifts I put on my wishlist are. It is a step in the right direction. Am I alone, or does anyone else find it distressing to buy items you know are made by people in horrible (even deadly) working conditions and children sacrificing their education at the age of 10 to work for 20 cents an hour? I don’t mean you hear it, think “that’s awful,” then go ahead and buy items without thinking again. I mean, does anyone else have a moral dilemma about the fact we are purchasing items at prices only possible because of the suffering of others? It seems as though from what I’ve gathered, overall, people prefer to not think about it. I’m not judging anyone for preferring not to ponder this truth or pushing anyone to do so; I just can’t pretend I don’t know as I add items to my shopping cart. I feel as though the way I spend money is my way of casting a vote. I think anytime we take the time to learn more about how to alleviate the suffering of others, it is good news… even if it is unpleasant to learn about!