Health Update · Learn Something!

When I Say Yes, But My Body Says NO: Parenting and Chronic Illness

I’ve been very excited for us to have our Emma (5) for the week. I knew I wouldn’t be able to do much, especially with how I felt today and having a big day planned Sunday. She always gets the same Jackie as far as verbal interactions go. However, days where I can do anything involving being up for too long without an immediate rest afterwards (we’re talking up for 10 minutes followed by an hour at rest), require careful rest beforehand and careful medicating the day of to make it happen. I soak in those days to the fullest. I take videos and pictures to remember how good it can be. I cannot too often medicate myself into being that woman who, on a busy day, can twirl her dress in circles or it will earn me a ticket to the hospital.

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Anyways, I’d hoped maybe tonight we could play her favorite board game.

Well, a shower promptly put an end to that pipe dream. I try and not do things that will wear me out when she is coming, but my hair couldn’t be put off another day. I swear it had a slight farm animal stench. (Don’t ever say I held back.) I was worn out and getting a migraine by the time she got here. Add this to the to the fatigue, sore throat, painful lymph nodes, low fever, dizziness when I stand… and it makes for a challenging existence. My autonomic nervous system is already in overdrive which results in my body being hyper-sensitive to noises, visual stimuli, and made it hard to think. She arrived and was was being a normal, happy 5 year old, jumping around being silly, teasing her Dad. However, it was enraging my autonomic symptoms. Every little squeal or shout of glee made me want to curl up in a little ball.

I’m HUGE on Emma understanding the fact certain things make me feel more sick, however she does not make me feel more sick. She is the happiest part of my life. For example, shouting may make me more sick, but it’s not her; it’s anyone who shouts. I popped in some earplugs. Emma can keep being a kid, I can still laugh at her silly tricks, Jake can be active with her, and I can have a shot at feeling less symptomatic. When at all possible (and it almost always is), I either attempt to redirect her attention or take steps to help my body cope. She isn’t bothered by the earplugs or me laying. She still asks me questions, she still tattles on Daddy for copying her, she still is smiling, she’s still showing me the ingredient list of every food she eats to see if I can eat it or not, I’m still loving her… the main difference is I don’t feel good.

Anyways about that: nope. Body was not having it tonight. I couldn’t handle all of the sensory input in addition to the earplugs only blocking so much. I didn’t even have thoughts. My physical symptoms took up nearly every space of my available consciousness. I wasn’t laughing automatically. I was thinking “if you felt good you’d laugh when she did that” and then laughed, because my body was too sick to think about something being funny. Basically, every facial expression and such had to be thought out to be anything aside from a miserable heap of sick. I was hoping to use the whole “fake it till you make it” approach, but it didn’t pan out.

How my body requires me to act physically is not at all how I feel emotionally. I want to get up and be silly with her. Heck, I’m happy to be able to be silly with her from a reclined position! It’s such a horrible feeling emotionally being excited to see her, then having to choose between asking her to be still/quiet, or disengaging a bit in order to be able to stay in the room. Today, this choice, which I regularly have to make, was just too much. After having to sit and not engage much (by this point talking was challenging), I went to the bathroom and cried. In that moment, feelings of powerlessness to change my course and missing out overtook me.

I have those wonderful days where I can be a “normal” stepmom, but most of them I cannot. I know most parents tend to feel they could do better, play more often, keep a tidier house, an so on, but it is different feeling when you are physically held back from parenting the way you’d like. I tend to focus on what I can do and ways I can be a fabulous parent. However, no matter how hard I tried, I couldn’t refocus on positives.

I thought of all of the things I’d like to do with her that won’t happen unless carefully planned. She will experience them, which is a comfort, however I won’t be a witness aside from the pictures she shows me. I thought about what this may mean about having more children. I thought about how I can’t seem to get back on my feet from the wedding, how I haven’t had a “good” day unless it was the result of medication covering up my symptoms, which like I said, I cannot do every day, and how life doesn’t show any signs of slowing down. Honestly, I don’t know how much slower it could go for me. I had a few bitter thoughts about how I barely did anything today, and all I wanted was to have taken a shower and lay in the same room as my kid, then play a board game. Okay, fine; I visited the bank too. I thought about my husband, parents, family, and how it must be hard to feel powerless over all of this. Will Emma feel powerless when she is older or will it be normal for her? I wondered how I can keep hope, yet also accept my situation. Was hope causing me to be let down and get so upset? I dismissed that idea because hope is what keeps me going; I know this. I moved right along with my pity party, nonetheless. I wondered if anyone will ever figure out how to make me better, or at least more functional? Will I ever experience not having to be the expert on the interaction of my conditions? I have one expert per condition, which is more than many have, but no one doctor is an expert in all three. If I never feel better, will I regret all this time spent going to doctors (as directed) and giving them the information they need to understand/help me? (“NO!!!! Don’t stop!!!!” my mind, logic, and spirit scream) What medication will I choose to try next? Will my new insurance give me another shot at IVIG? Will it be as tough as last time? Will it be worth it in the long run?

During all of these racing thoughts, I told myself the answer to hoping and accepting at the same time is being in the moment. However, sometimes my mind rejects the notion of accepting the moment for what it is. Especially when my “in the moment” is feeling so…. I don’t know what word encapsulates how I feel. I’m not going to spend time choosing a word. Feel free to offer word suggestions in the comments.

So, yeah. That’s a lot to have going through your head. Right now, I have the urge to tell you about ways I use to typically stay positive/not crying in the bathroom in these situations. I am going to save it for another day because I feel like that would be implying my crying needs rationalized, and it doesn’t. It’s a perfectly normal response to my situation; I can’t always feel positive.

Good cry out of the way, I made a delicious smoothie. I called for Jake and asked for a hug. (ASK for what you need people — your family isn’t psychic). When it sounded quieter in the living room, I came back. She was watching a movie. I did the earplug in one ear, the other ear open trick to minimize noise, but still be able to hear. I asked if she’d seen our wedding highlight video. She hadn’t, so we watched it together and laughed. This time, my laugh was genuine. The living room was dim, quiet, and there wasn’t anything going on, so my body was able allow my brain some mental space to experience life. Then, she grabbed her snack and asked if she could sit in my chair with me. To which I said, “Of course!!” I don’t know how sick I’d have to be to turn down a cuddle. It hasn’t happened yet. I proceeded to guess which color cereal she would pull out of her bowl next. She found my delight when I guessed correctly hilarious. I felt completely content and happy. I tried to remember how sad and hopeless I’d felt just 20 minutes earlier in order to reflect on it a bit, maybe learn a thing or two, but realized I couldn’t learn much. Being sick is tough and having fun with Emma is awesome. That’s all there is to it.

She got ready for bed. She gave me one of her favorite stuffed animals and one of her favorite blankies to sleep with. Her loaning blankies is not to be taken lightly; she has a sort of ritual for how she lays them around her and on her pillow and such. All three of us laid in bed while she fell asleep. I had to lay squished in the middle of Emma and Jake so there would be room on Emma’s other side for her giant elephant. I loved it. As I often do during extra happy times, I tried to memorize my contentedness, my happiness, my feeling of my life being perfect and amazing. The feeling that there is more I do experience with Emma than I don’t.

So, I guess I lied; there was something to learn from reflecting on my sadness from a happier place. I took note of how my illness may really upset me, understandably so, but Emma is a happy child with me being exactly how I am. I took note of how while crying in the bathroom, I felt like I could never not feel despair over my situation, yet here I was 20 minutes later in heaven. During those times when my mind goes toward dark thoughts, I will remember this feeling. I will remember the fact my lows never last long before life reminds me how wonderful it is.

An old picture of Emma taking my
An older picture of Emma taking my order for her restaurant. She’s on to something with the bedside delivery.

12 thoughts on “When I Say Yes, But My Body Says NO: Parenting and Chronic Illness

    1. Thank you! I wrote it last night right after E fell asleep, before I lost the nerve. Of course it was on of those deals where you think, “I’ll pump out a post real quick here…” 2 hours later of off and on working on it, was still editing. 😀

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  1. I can’t lie, the title made me bust out singing “I don’t see nothing wrong, with a little bump & grind.” (My mind’s telling me no, but my body’s telling me yes?)
    All dirty thoughts aside, I so admire your ability to balance motherhood with nurturing yourself. You explain things to E in a way I would never have thought, like she isn’t causing you more pain but shouting is. And working in activities you can participate in but not tire yourself out. It’s so hard to allow yourself breaks or days off without feeling guilty, especially with children involved. You should write a book!

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    1. Ha thanks! I want to write a book someday, but fiction.

      When I wrote that title, I was thinking of a song but quite a different one I must say — it was that song that goes, “My body tells me no/ But I won’t quit/ Cause I want more/Cause I want more” Once, as I laid collapsed in bed after a series of decisions I knew would land me there, Jake told me that chorus is my song LOL.

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  2. I often feel everything you explained in this post. I think being a parent while being chronically ill is one of the hardest tasks around. Not only are you fine balancing your life and every move, but you are also doing it while balancing and doing what is best for theirs. Jackie, you are doing a phenomenal job even when you cannot partake in things. So glad you try your best to focus on the cans versus the can’ts. ❤

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  3. P.S. This is a part of my post yesterday. Hope it helps!

    “It was nice for it to be acknowledged that resisting to do things that trigger flares is much different than succumbing to it.”

    ALWAYS here if you need to talk!

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  4. Fantastic post! I also have good moments where I try to “freeze” the feeling in my mind so I can later say, “See? It’s not always going to feel so bad!” These have gotten me through some of my roughest times. Whenever I’m experiencing a bad symptom flair-up I remind myself the only constant in life is change and if life’s circumstances can seemingly change to the negative, they most certainly can eventually change back to the positive.

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  5. Thank you for this post Jackie. I was diagnosed with POTS seven years ago and recovered a few years ago, and it has come back this winter. I found your blog a few months ago and I love it. I have two boys 9yrs old and 11 yrs old- and they are the best part and the hardest part about all of this. I hate not being able to be the Mom I want to be, but I have to remind myself they are doing great. Thank you for putting my thoughts into words and making me feel like I am not alone!!

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  6. Jackie you remember I rolled my elbow out of the socket about a month ago and didn’t think it was all of the way back in? Finally went to chiropractor today and he popped it the rest of the way back in (It was sublucated. How do you spell that?). I was going out to lunch today and had rented carpet cleaner and wanted to do floors and furniture. I also decided I needed to clean the pool in case Jake and E wanted to use it. Needless to say even with brace, elbow was not up to all of that. Very stressed about getting it all done and angry/agitated arm wouldn’t work properly even though shoulder was fine. I was engaged in some serious mental ranting and raving when I realized I was absolutely not going to be unable to do what I wanted to do. Then I thought of you. I thought Jackie would be so happy to be able to go out to lunch and clean pool on the same day. Or to do either one of those things on a given day and not be sick from it. Felt somewhat ashamed of myself and decided I could actually rent the carpet cleaner to different days and to calm down. I don’t know if this makes sense, but I felt like my day related to yours, obviously on a much smaller scale. Once again you were my role model and hero. Don’t know how you do it. Love you.

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