Health Update

Hey everyone — I’m still here!

While I’d like to think I handle each and every day of this busy time of year with grace and ease, chronic illness and all… all the while, looking something like this:

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The reality is, I’ve probably spent most of my time this month looking a lot more like this:

20131217-164407.jpgor this…

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My body really needs to reset itself. I keep working on it, but life (which I really do enjoy living) tends to set me back. I’m beginning to think the only way I will get healthy is if I am somehow sealed in a stress-free vacuum for 6 months to 1 year where each day will be the same and I have little responsibility. I know, I know, who doesn’t want that? I never used to be someone who got bothered by stress (look at my job/volunteer choices!), but with my norepinephrine issues related to posture changes, my body really can’t handle any extra stress. I didn’t used to believe this to be true because I am such a resilient person. I thought stress only effected me, personally, in any significant way mentally, but I now see this isn’t true. (Fine Mom, here it is: YOU WERE RIGHT!) I am unsuccessful at tricking my brain with the whole “Things are only stressful if you think of them as stressful. Just don’t think thing’s are stressful, think that they’re a fun challenge!” Yeah, doesn’t work so well when your body physically rebels against you! Several things I used to find exciting about Christmas are now stressors. This is because, often, I am trading the holiday activity I want to do on a given day for something simple such as washing my hair or preparing a meal. It leads to me getting really behind on my activities of daily living and still never feeling as though I am doing the holidays to my satisfaction. Unfortunately, the energy doesn’t just magically appear because it is the holidays! I was trying to figure out Emma’s (step-daughter-to-be) Christmas presents and create a list to present to Jake (fiance) of our options for our budget. I had my list of “must haves” then a list of optional gifts we needed to choose from. He walked in the room and said, “We are buying Christmas presents, you look like you are diffusing a bomb… maybe you should step away from the laptop.” LOL! He’s right. I did need a break (although I didn’t take it because it really needed done ASAP and I didn’t know when my next energy burst was coming). Figuring out things is more stressful when you have adrenaline (norepi) messing with how your brain is functioning than it is for normal folk.

We went and visited Jake’s grandparents 4 days ago and had a lovely visit. The night before our visit, I made ornaments with Emma (yay) to hand out to people. The day following our pretty lengthy (for me) visit was spent in bed, only getting out 5 times because of my normal symptoms (except nausea :) ) plus really severe joint pain. Ouch! I’ve recovered quite a bit since then, especially compared to how I would have this time last year, but am still severely fatigued. I used to think when people said they were fatigued they meant extra tired, or how it used to feel when I had a long, busy, stressful week, but it is completely different. It’s more like how you would feel if during that busy week I just spoke of… if you also caught the flu, went to bed at 11 with some NyQuil, then someone woke you up at 1 AM… how you felt those few moments after waking, that is how you’d feel all day. That is chronic fatigue. Plus, if I try and do much of anything sitting up, symptoms start flaring. Pretty annoying, eh? At least I can still read, use the internet, text, etc. laying down. I used to be so bored on days like these. Now, not quite so much! I also am super excited because my “emergency” appointment with a geneticist (one of the leading Ehler’s Danlos Syndrome (EDS) experts in the world) is in less than THREE weeks! Perhaps he holds some of the answers and can help ensure my Christmas seasons aren’t always so full of health related challenges.

8 thoughts on “Hey everyone — I’m still here!

  1. Oh my gosh I totally get that. You feel all crummy, but there’s a big occasion happening (whether its Christmas, a birthday or something else), and because you’re always sick you feel like you have to put in extra effort to see people and be present. But you can’t, because you’re sick (or you do and it wipes you out). Which only makes you want to try harder next time. And missing out all the time sucks. Especially for those big important occasions.

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    • Phew! Who would have thought my doctors appointment yesterday would have been more exhausting than the holidays? Perhaps it wasn’t being quite “back” from the holidays then riding 2 hours each way and talking with the doctor for 3 hours that did it. Either way, I definitely did better this holiday season than I did in 2012, maybe 2014 will be even better.

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  2. Hi Jackie! Ok, three things about this blog. I loved the pics!!! The middle one especially… I’ve seen the precursor to that before, and I was afraid, VERY afraid!!! (Lol). Second I cracked up when you said your Mom was right! She’s right a lot, but I thought we all agreed not to tell her we thought so! (Lol part two!!!) Third, your description of chronic fatigue really hit me when I read it… It probably still falls short of the real thing, but it gave me something to relate it to. Wow! Your attitude is sooooo amazing! I wanna say more, but it would just read all cheesy! (Lol again) I love you Kid!!! If we can do anything for you, just let us know. :)

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    • Sorry for breaking the family code on telling Mom she was right… I must have wanted something from her the day I wrote this post. :-P Thanks for letting me know my description worked! It’s always hard to choose how to explain how my illness feels, so it’s nice to know what works to convey the message.

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  3. Oh Jackie, those 3 little words you and I love to hear :)
    I have high hopes for our apt. I believe you have all of the tools you need. If someone figures out how to master our messy autoimmune systems I believe we’ll get amazing results. Love you!

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