I was recently with a friend, and a few minutes into our time together, she told me she’d just gotten off a phone call related to a very hard situation her family has had for years now. She was feeling overwhelmed and sad and physically sick at the thought of the ramifications of the call.
My heart went out to her, and we prayed right then, asking that God would continue to help her trust our good, sovereign Father and that He would show her family mercy according to His good will.
She excused herself to get Kleenex, and when she returned, I chatted away about Thanksgiving recipes, Christmas lists, family friends… anything but the difficulties that surely lie ahead. Maybe trying to distract her was okay (we did have all our kids nearby), but maybe I should have asked her how it felt to be in this situation, what she feared, how she had seen signs of God’s past faithfulness. Either way, I definitely wish I had just ASKED her whether or not she wanted to talk about it more.
I want to learn to have a good listening ear. Do you have one? How do you listen, truly listen, to those around you?
Thank you to those who “listen” to me through these blog posts. I am not always the best at sharing face-to-face, and I am so grateful for your encouragement, whether I see you often or have not even met you. I hope tomorrow is a day full of Thanksgiving for you!
Now that I have POTS & NCS, one thing I REALLY, really miss is walking around our neighborhood (well, walking anywhere). I love walking with Mark, walking with the kids, walking with friends, walking by myself. Sometimes I get a little stir-crazy and just want to get out in the fresh air and walk!
My imagination was stirred recently when I came across something on Craigslist, this kids’ electric scooter:
Hmm… maybe on something like this (small profile, quiet, stable, with a seat), I COULD get back out there and explore the neighborhood with friends and family or on my own.
Let the Googling begin! I quickly found this option, which my husband and I tried out at Academy Sports. Turns out, the cutesy-factor meant it REALLY was for kids– my knees were practically bent up to my chin.
How about this one? Could be the winning one, but we want to try it in person; it might require me to be TOO upright and use my core to balance too much.
Now this one screams comfort and would be perfect (reclining seat, no need to balance, still quiet and can get up to speed), but it also might look a teensy bit too old-school for me, plus it comes with a hefty price tag.
At this point, we’ll just go straight to a Harley. Can’t you see it?
So, in the meantime, I got this sweater last weekend and wear it with pride. Guess this’ll do for now!
Be on the lookout one day for me to be zooming in a neighborhood near you!
Well, my posts have slowed down a bit recently, partly because I have had worse headaches these days. I am hoping it’s just a temporary blip and do not want to relive the two years of horrendous, horrible headaches I experienced while I was coming down with POTS.
In the meantime, I have something encouraging to tell you. One recent morning, when I woke up with a horrendous, horrible headache, I honestly wasn’t sure how I’d make it through the day, or really, the hour, with that awful feeling in addition to all the ramifications of POTS & NCS. I begged God to take my headache away, and in His sweet mercy, He did. From Jan 2012-Jan 2014, I begged God to take my headaches away, and in His sweet mercy, He did not.
I realized that even if the horrendous, horrible headaches return in full force, God IS faithful. God IS good. He will NOT abandon me. He WILL care for me and provide for me tenderly and lovingly even in the midst.
Have you noticed illness can be kind of, well, ugly? The physical aspects of sickness can often be a bit– or a lot– yucky, but how about all the paraphernalia: the bedside potty chairs, the countless brown pill bottles, the unattractive mobility items? I mean, where’s the Anthropologie of medical supply stores? Where are the ikat-patterned ostomy bags, the polka dot breathing masks, the glitzy compression stockings? And I’m actually not joking.
I have always loved having beauty around me, and a lot of my thirty-something self has rebelled against the unattractiveness that has attached itself to my illness. In fact, when I don’t feel well, I don’t want to feel worse by having to use unattractive things– I am cheered up by lovely things!
Now this notion is ridiculous to some, and that is totally fine. You may not be at all inspired by beauty but may love delicious food, fabulous music, stimulating conversations, or something else, and those things may be a big boost to you when you are unwell.
For me, I got tired of having my bathroom counters lined with ugly, junky bottles, so here is my dollar-store solution:
I refused to use a shower stool, because its unattractive nature only made me more bummed about my limitations… until I found this one:
As soon as we bought my wheelchair, I asked a talented friend to make a cover for it, because I just couldn’t do navy blue vinyl:
Everyone’s different on this: A manicure (see below) makes me more stressed than relaxed (aaaugh! a chip already!), and your navy blue vinyl wheelchair doesn’t bother me in the least. I also realize, with this post, I am at risk of coming across as a high-maintenance diva, but please know that I would just love to encourage you in enjoying whatever God-given gift (art, the outdoors, dear friends, floral arrangements) gives you a boost.
Yesterday, I watched the last episode of Call the Midwife, Season 3. In it, Chummy’s very ill mother expresses a desire to have a manicure, knowing beautifully painted nails will help her maintain a sense of dignity. When Sister Monica Joan encourages Chummy to paint her mom’s nails, Chummy says, “I can’t. It seems frivolous when there’s so much else to do.” Sister Monica Joan replies, “There’s nothing else to do.”
I love that. Just then, painting her nails was the best way for Chummy to love her mom.
Our family has been writing down blessings to put in a Mason jar on our counter this year. I love it because 1) we are sometimes fussy and complaining, and it’s good to look at our many blessings; 2) we sometimes enjoy blessings… but then forget them; 3) we love looking back and being reminded of God’s active provision.
After all, how would we remember that Luke was “tankful that I saw A DEER” bounding from the woods as we were driving through Vicksburg Military Park one dewy, green summer morning? How would we know that in 2014, Ella was thankful for crackers? We love rejoicing with David that we had a car on 6/22/14 (and still do!– a huge blessing we sometimes take for granted). And, yes, we are all rejoicing that a community group from our church just let us know they have decided to adopt us and bring us dinner once a week! YEAH!
Your life may be really difficult right now… but I bet there are a few blessings around you that help point to God’s goodness. (One of my blessings today was that, for lunch, I got to eat a hot bowl of leftover soup outside in our leaf-covered backyard.) Your life may be fabulous right now… and I bet there are a few blessings around you that you’ll want to remember.
“Here I raise my Ebenezer; Hither, by Thy help I’ve come!” (What am I talking about? Ebenezer can be traced back to 1 Samuel 7, when Samuel took a stone and named it Ebenezer to commemorate God helping the Israelites defeat the Philistines. The word itself means “Stone of Help.” And, no, I didn’t just happen to know that… thank you, Google!) I’ve seen people write their blessings with a Sharpie on small stones, to fill up a bowl– love that idea! How do you like to celebrate and remember blessings? What blessings do you have today?
For me, lightheadedness was a big clue that something was possibly quite wrong with my body. In the fall of 2012, I started getting lightheaded anytime I stood still: waiting in line at Walgreens, chatting with friends in the kitchen, tucking my kids in bed, singing a hymn at church, scanning shelves of books at the library, looking at clothes at a store. (Hence, the stool!) I also got very lightheaded any time I lifted my arms (putting on mascara, grabbing something from a high cabinet, hugging my husband’s neck). A low moment came when I was waiting in line at Goodwill with my then-4- and 6-year-olds and slumped to a puddle on the filthy floor to avoid passing out. When asked if I was okay, my then-4-yr-old Ella put her hand on her hips and sassily told everyone, “It’s just a headache.” Um, not exactly. (More about that in a future post: Horrendous headaches were my first big clue something was wrong.)
Lightheadedness feels like I’m woozy; the world is a bit fuzzy; my body is unsteady; I need to sit or lie down!
I started telling my doctors about this, and off we went on a version of “If You Give a Mouse a Cookie.”
If your physical therapist sees how lightheaded you are during exercises, especially when you raise your hands above your head, he will refuse to treat you anymore and send you to your primary care physician.
If your primary care physician has you sit up straight and breathe in and out as he listens to your chest, you will almost pass out, and he will send you to your neurologist.
If you see your neurologist, he will suggest that you are highly anxious and prescribe Xanax. You know people with mental illnesses sometimes don’t realize they are unwell, so you think, “Hmm… maybe I’m highly anxious and just don’t realize it.” Turns out, you’re not, and Xanax doesn’t help. Repeat to yourself: POTS IS NOT ALL IN MY HEAD.
If you go to your orthopedist and tell him how raising your hands makes you lightheaded, he will have you demonstrate to compare the left side vs. the right side. When you almost pass out after keeping your right arm in the air for a few minutes (though seated), he will get very excited about this phenomenon. He will send you to a leading vascular surgeon.
If you go to the vascular surgeon, he will also get excited by how lightheaded you get, how your heart races, and how your blood pressure drops. He will want to devise a test for you so he can study what’s happening. A couple weeks later, he calls to tell you you are beyond his scope, and he will make an appointment with a cardiologist.
If you go to a cardiologist to tell him about your dizzy spells, he will correct you and tell you to use the word “LIGHTHEADED.” Dizziness is more like the world is spinning around, which is not really how you feel. That was helpful. He will also say (when asked if you could have signs of POTS) that he would NOT treat POTS, because he is a CARDIOLOGIST. Oooooo-kay! (Many people with POTS are treated by cardiologists.)
If you get extremely discouraged and try a brilliant new internist, she will send you to an electrophysiologist. You will tell both of them all your symptoms, which you’ve been reluctant to share in case they think you’re crazy. (Repeat to yourself: POTS IS NOT ALL IN MY HEAD!) They will have you do a tilt table test, and after 12 minutes of standing upright, you will pass out. Your body’s mixed response will have them decide to send you to Vanderbilt University’s Autonomic Dysfunction Center. And boom, now we know! Lightheadedness DID mean something was wrong, and I have POTS and neurocardiogenic syncope (mixed dysautonomia). Turns out, my brain is not telling my body how to work properly to get enough blood to my brain, hence, lightheadedness!
You are thankful that lightheadedness, a key symptom of POTS, is often relieved by lying down. Although you are now maxed out on meds and have improved, you still get lightheaded every day while upright (though less so) and are glad you’ve learned to manage by sitting a lot, using a wheelchair, and having your trusty stool.
Have you ever gotten the runaround for a medical issue?
I realized yesterday that resting is, for me (unwell with POTS & NCS), practically a part-time job. I spend 15-25 hours during the work week resting, and that doesn’t include getting in bed at 6:30 or 7 some nights. Wow! While I can sometimes read or watch something or maybe get online as I rest, at other times, I cannot handle any of those activities and have to just stare into space as my brain rests.
Resting is not my favorite part-time job. (That probably would have been my adolescent stint at TCBY, which included all the free frozen yogurt and toppings I wanted– hello, cookie dough.) I would prefer to use all this time getting together with friends, beautifying our home, using Pinterest to create something, pursuing a new hobby, walking or bike riding, helping at the kids’ school, running errands, or even WORKING AT A JOB. You know, like the part-time ones I had pre-POTS. You know, where you DO something and maybe earn a little cash.
But, no, that is not what God has called me to right now. It’s definitely bizarre, being so limited in what I can do. It’s at times frustrating, sad, discouraging, and boring.
We were talking to the kids about envy the other day, and I shared that sometimes I feel a bit envious about others who can do more than I. The kids all just stared at me until one pointed out, “Well, that’s almost everybody.” Yeah. Thanks. Then another helpfully mentioned that I am very good at resting. (Another one said collapsing.) Fortunately, I found this kind of funny, along with the fact that they all had shocked expressions on their sleepy faces one recent morning as I was already dressed for the day when I woke them up for school, because I had an early doctor’s appointment. Two of the three blearily asked, “WHY are you dressed?” (Like I’m not dressed every morning; I mean, wearing PJs and a robe IS dressed.)
I do find hope, though, in that the sovereign God of the universe has planned THIS for me right now. That means I can glorify Him by resting and that I am fulfilling His will by resting. Somehow, it turns out, He can carry the world EVEN while I rest. Amazing, huh? And, hey, watching a fun show at 1:30 in the afternoon while sipping foamy steamed almondmilk DOES have its perks. Now if I could just figure out a way to stream HGTV….
Do you like to rest? Have you ever had a part-time job you loved? Or hated?