Our son has been sick for the better part of a week now (flu-like symptoms; nothing serious) and often mentions how bad he feels, how he wants to get better, and how he can’t do much. He lies around a lot and when he’s up, he walks around droopy, pasty, and lethargic. It all sounds a bit like my own life, I will say!
However, although I certainly still have my share of walking around droopy and telling my family I feel bad, I realized I have gained some confidence, too. Although I have not gotten way, WAY better, I am getting kind of used to being sick and am definitely better at making decisions that enable me to maximize my days and doings.
I know, now, that on a good day, I can mop a section of the kitchen floor before sitting to rest in the family room for a while until I do the next one. I know now that I can probably chat perkily for a while at a party if I make sure I’m seated and am drinking a glass of salt water. I know to rest before certain big events and avoid other ones altogether.
I’m also cautious about certain things: I’m still gunshy about walking the entirety of our church, because I’ve gotten too close to presyncope too many times. I’m still hesitant to give my son a buzzcut while I’m standing, because I grow too lightheaded. I’m still careful to have a stool in the kitchen so I can sit down at a moment’s notice while prepping meals.
I have made progress in adapting to my altered lifestyle with a chronic illness; however, I would like to understand more about how to live with POTS and NCS. I mentioned that we are considering having me go to a three-week program at the Mayo Clinic for people like me who have autonomic dysfunction. Today, I will undergo the last local medical tests needed for Mayo’s evaluation of all my records, then I should hear in a couple weeks whether they will accept me as a patient. I’ll keep you posted!
Have you had to adapt to a very different life than you thought you’d have? How have you done that?
Several of you far-flung blog readers have checked on me recently in my posting absence. Thank you! I am glad to report I am here, doing about the same as I have been. Really, I only have one thing to blame for my silence: TAXES. However, I am proud to report that as of Saturday, I completed our taxes; I took them to the post office this morning; and now they are a thing of the past!
I have mentioned before that I have limited physical energy to spend; I also have limited mental energy. Doing our taxes took weeks for me, as I had teeny little chunks of mental-energy times to work on them little by little. (Plus, time on the computer makes me feel worse, so it was mostly limited to tax-doing.) I know I’m not alone in taxes taking forever, but the mental-energy thing feels a bit different. For example, I recently agreed to help our community swimming pool with a small aspect of membership: I spend 30-60 minutes a week on it, and it feels like I’m maxed out. (And no, the word “minutes” wasn’t a typo for “hours”!) In this picture, I’m organizing a drawer stuffed with papers from the past six months or so, and it will take me several days to do it.
I’m certainly not alone in things taking forever– those of you working, caring for others, volunteering, homeschooling, single parenting, homemaking, or doing any number of things only have limited time for many things. It just feels strange for things to take so long when I have so much time! But in some ways, I don’t really mind that all this takes a while (having little ones in the house all day, every day for years gave me some experience with slow-task-completion that I know many of you mamas are still dealing with!); however, I just need to make sure I keep my schedule pretty clear so it doesn’t get overwhelmed. This is a stark contrast to the full, fast-paced life I used to have!
By the way, did you know that people with POTS tend to have been high achievers before they became ill? Strange but true (at least anecdotally– but occurring often enough to be mentioned in Mayo Clinic literature on POTS commonalities). I’ve also read that people with POTS tend to be women, often tall and on the trim side, often fair-skinned with blue eyes. Sounds familiar! Hmmm… maybe I should work on my tan this summer, fill up on junk food, get colored contacts, be sure to wear flats, and it’ll all be a thing of the past.
Do you like doing taxes? I actually don’t mind too much, especially when we get a little refund! Anyone getting a refund this year and doing something fun with it?
Okay, I actually kind of LIKE Christmas shopping and picking out gifts for everyone.
However, now, when I shop, I get nauseous, headachey, and exhausted after about half an hour… and if I try to walk instead of use a wheelchair or scooter, I get close to passing out. Oh, wait, even “normal” people feel that way when they shop this time of year!
Anyway, here is how I Christmas shop these days. Repeat after me, “FREE SHIPPING!”
Do you have favorite websites you order from, or do you like to go to brick-and-mortar stores?
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.
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?
Tonight, I’ll be home curled up in bed with an electric blanket while my husband attends our neighborhood party with a football fan, a ninja, and a ballerina… AND lots of candy!
I will say, I’ve been able to go to more things this past month (YAY!), but POTS & NCS are having a bit of a heyday with my body right now–extreme fatigue, nausea, lightheadedness, and fluish feelings are making themselves known. I’ve learned I won’t always feel quite this bad, Lord willing, but for tonight, I’m missing out. (Oh, you might like one of my favorites posts I’ve written; it’s on missing out: Home alone.)
Last year, during trick-or-treating, I told myself I was dressed up as an invalid, since I had to be pushed around in the wheelchair. This year, maybe I’ll pretend I’m a ghost. (Are ghosts invisible? If so, that works. Oh, wait…. I don’t believe in ghosts.)
Happy Halloween! Do you (or did you) dress up for Halloween?
I’ll be honest: Continual fatigue is a tough symptom for me to accept, because I have a hard time believing that I can’t/ shouldn’t completely ignore it and 100% push through it. I mean, don’t we often hear about doing anything we want if we try hard enough and believe in ourselves and really, really want it? This lie, the idea that we can control our destiny, is a trap I can fall into.
Just yesterday morning, I was tired of being tired and was letting all the recent media flurry about the dangers of sitting get to me. I decided I’d walk around inside our house once or twice each hour of the day. Good idea, right? I mean, I’m practically going to be rocking “from the couch to a 5K” before we know it. I decided to start with a bang and walked from our bedroom to the far end of our house and back, TWICE. By the time I finished, my blood pressure was so low it was undetectable (probably 80/50), but I did it and didn’t feel too bad. Yeah! I’m on my way!
Three hours later, I was completely worn out and felt like I could hardly move. (Vat of caramel, anyone?) I guess fatigue is a real symptom, one that I cannot simply outwit or ignore or pretend to be untrue.
Sufferers of MS, lupus, POTS, rheumatoid arthritis, cancer, Lyme disease, and many more illnesses tend to struggle greatly with fatigue. I posted about fatigue here. Now I want to let you in on a great way to understand chronic illness fatigue.
I hoped I could share with you the Spoon Theory in its entirety here but have not yet received permission, so far now, click here to read (it will open in a new window), then y’all come back now, ya hear?
The Spoon Theory is helpful for me to realize I won’t completely be able to do my pre-POTS normal activities, and I need to learn how to use and conserve spoons wisely. I hope it’s helpful for you too. All right, back to the couch!
One reason I do this blog is so others with POTS, NCS, or other forms of dysautonomia won’t feel as alone. I have only met (in person) two people who have POTS, and both of them have different experiences than I do, along with some overlaps. To me, it’s helpful to know others are going through something similar and that I’m not (just) crazy. Today, I am introducing another typical POTS and/or NCS symptom; for more, see here.
I recently asked members of a POTS Facebook group to describe fatigue. People posted a lot of great answers (at bottom). My favorite came from Lea K.: “Fatigue feels like I am in a big vat of caramel. Everything is so heavy.” This resonated with me, and I think, many others.
Fatigue is a major problem for most people with POTS and/or NCS, as well as many other chronic illnesses. My husband helped me think of a helpful way to explain it. He had a cell phone that, when far from home, would constantly keep trying to find service and would run the battery out quickly. For me, my body is always trying (and often failing) to find equilibrium and getting exhausted in the process.
I describe fatigue as feeling like I can only move my eyeballs—the rest of my body is too heavy to move, even though I may not necessarily feel sleepy. I do have fewer horribly rough days than I used to, probably thanks to my treatment, but fatigue definitely limits my activity level every single day. I often am quiet when very tired, and my face sometimes droops a little, almost as though even my facial muscles are worn out. I usually don’t want you to know just how fatigued I am, because I want to be my old upbeat, energetic self, so I may use a good bit of energy trying to convince myself (and you) I’m not that tired, to varying degrees of success.
Thanks to others who contributed descriptions; some may resonate with you or help you understand POTS fatigue better.
Susie: For me, fatigue feels like 100 pound weights pulling me into the ground.
Toni: I feel like a potted plant.
Venus: I’m living in a stage of constant fog.
Emily: For me, fatigue feels like being run over by a truck .
Chelsea: Emily, that’s what I was going to say too! Except I was going to say like being run over by a MACK truck.
Jennifer: For me, fatigue feels like not being high energy me.
Christina: For me, fatigue feels like dental anesthesia, except you’re not allowed to sleep it off.
Touching Lives: For me, fatigue feels like my body has been unplugged from its energy source but still expected to somehow function. I always feel like the toy whose batteries are drained but you keep pushing the button to hear it make the dragging sound that it makes. I hope that makes sense- if not please just chalk it up to my fatigue!
Ellen: I lay there in pain, and I cannot move.
Jac: For me, fatigue feels like the protective heavy vest they put on you for dental procedures. One word? Heavy.
Donna: Like your brain does not have enough energy to even make your limbs move.
Colleen: It’s completely consuming. Resistance is futile.
The next few days, I’ll post a bit more about fatigue since so many can relate– sounds exciting, right?!? I know…. You are yawning already.
Healing comes from God’s hand. I can’t manipulate Him or trick Him into doing things for me, but He loves to work in and through me and you. Even as I wait on Him, I am embarking on a 100-day challenge to myself, as I seek well being and nurture my body and soul. This doesn’t mean I won’t or shouldn’t ever do any of these things after 100 days or that I never do them now; it’s just a concerted effort to discipline myself and soak up healthy nourishment.
Why am I telling you? Because it will help me really do it, I hope. I’m great at thinking of ideas, so-so at starting them, and terrible at finishing them. Here we go!
My 100-day challenge started Monday, September 15 (yes, I’m a week in!), and goes til Christmas Eve– that means we have fewer than 95 days until Christmas. Get ready!
These 100 days, I want to be outside more, soaking up sun (or clouds!) and God’s restorative creation. My goal is to spend 20 minutes alone outside, at least 4 times each week. I think this will help me as I worship God and listen to Him and take in His goodness and love. I’m thankful a friend is leading me through memorizing the first half of Psalm 139 this fall.
I plan to take a 100-day break from overstimulating electronics. For me, this means I will take a break from looking at Facebook (just checking once a week), electronically organizing photos (something I rarely do but intend to), checking e-mail as often, and visiting deal websites. None of these is bad; I am just trying to decrease nausea and help myself choose more restorative (for me) activities for 100 days, since too much computer time makes me feel worse.
Dysautonomia, which includes POTS and NCS, has at its core problems with the vagus nerve originating in the brain. I have read articles about restoring and strengthening the vagus nerve and would like to try to do that. My goal is to do biofeedback with the EmWave system (used at the POTS Treatment Center in Dallas) for 20 minutes, at least 5 days each week. Experts recommend choosing a consistent time; I would like to do this at 9 a.m. most days.
For 100 days, I plan to avoid certain foods to minimize inflammation and to address some recently diagnosed digestive issues. I am even going to give up coffee. I don’t drink coffee often and unfortunately have to stick with decaf due to side effects, but I do enjoy it. However, I am highly suspicious of it as it seems to increase nausea. Since I can’t seem to resist it (I love to try and retry favorite foods and drinks, hoping maybe THIS time, they won’t bother me), I am going to give it up for 100 days.
What else? I don’t know of specifics at this point but am looking forward to a quieter fall. I’m nervous about missing out on a few things, but I trust that God will help me. Pray that I will “seek first the kingdom of God and His righteousness” and that I will “seek the Lord while He may be found [and] call upon Him while He is near” (Matthew 6, Isaiah 55). Let me know, and I’d love to pray the same for you!
Have you ever gone through a self-set challenge? Have you had a favorite one or an extra hard one?
Well, no sooner do I write about getting better, than I get knocked off my feet. Saturday and Sunday, I experienced powerful presyncope that left me in bed most of both days. (I don’t know why this happened, but POTS is unpredictable.) I am on the couch today, very faint but cozy at home, thankful for friends and a husband who cook, throw in laundry, bring the kids home from school.
I dislike the worse days, but you know what? In some ways, I’m grateful to be reminded that I can’t do it all. After the blackouts in vision, the surges of nausea, the body weakness, the tremors, the loss of speech, I know I must wave the white flag and admit to myself that I can’t always carry out my plans, my desires. I’m unable to catch up on the laundry I’d let pile up, to drive the car– or even walk unassisted to get in it-, to make cobbler from ripe summer peaches, to sit at my son’s soccer game. I can’t do any of the 5 on my Can-Do List for a couple days.
Yesterday, before I’d fully come out of a presyncopal episode, I was in the church lobby, on a couch, hunched over, head resting on an ottoman, with one friend fanning me, another holding salty ice water near my mouth, and my husband trying to put a dose of midodrine in my mouth– I could not even lift my arm to take my medicine myself and the funny of the situation left me laughing so hard I couldn’t swallow it down. I could do nothing!
It WAS funny, and my friends were happy to see me laughing, but doing nothing is also hard. I want to be strong and independent and capable. I want to find my worth in what I can do and am quick to try to run there as soon as I can do things like stand up while brushing my teeth. So in some ways, I love that God, in His goodness, has chosen for now to let me live with POTS and NCS and reminds me that I don’t need to do anything to earn His love or find worth in His kingdom. In fact, I can’t do anything. “All our righteous deeds are like filthy rags”; but “God demonstrates His love for us in this: While we were still sinners, Christ died for us.” (Isaiah 64:6; Romans 5:8)
Like my husband and friends who practically carried me to the car, checked my vitals, changed my daughter’s sheets, picked up meals, cleaned our kitchen, and did our errands, God does all the work for me in saving me and delights in doing so. “Come, everyone who thirsts, come to the waters; and he who has no money, come, buy and eat! Come, buy milk and wine without money and without price. … Incline your ear, and come to me; hear, that your soul may live.” (Isaiah 55:1,3) He simply calls me to come and to believe.
I do hope to post more about what I can do, but I hope I will learn to rejoice, too, in what I can’t do and to praise God that He is exceedingly able.
A resource for those with chronic illness and a record of blessings along the way