Tag Archives: Dysautonomia

Because nothing works right!

New Workout Plan- Getting Over Myself

Friends, I’m going to be entirely honest with you. Sometimes my biggest obstacle in living with chronic illness is me. I stand in my own way sometimes, and I’m trying to learn how to stop that. I’m trying to learn to get over myself- my ego, my plans, my wishes- and enjoy life as it is.
Getting over myself at the gym.
Today, I was at the gym (it’s not official unless I tell someone on social media, am I right?), and I had one of those moments. You know, those moments when you’re completely aware that you’re struggling and no one else is. There was a young woman in the gym who based on my observation must be training to be the next Ninja Warrior or planning to fight dragons. She lifted weights, jumped with said weights, hopped like a frog, leaned, and grunted. It was an impressive sight. Meanwhile, I was chugging along on the treadmill at a snail’s pace. Was she doing her best? Obviously. Was I? Yes. That should be the end of the standard for success, but it’s not for me. You see, I kept thinking about how embarrassing it was to not be able to do anything but walk on the treadmill. I played out scenarios in my head where someone asked why I wasn’t doing more. None of those things happened. The others at the gym did their thing (including Super Woman doing her ninja training), and I did mine. I had to repeatedly remind myself that the judgment I was feeling was all imaginary. Everyone has a different best effort, and that’s okay. I know that. It’s just easy to forget when it seems like everyone is way more impressive than I am.
Getting over myself in my marriage.
You may have noticed, but I tend to take things personally. I swear, Joe could say, “It’s a beautiful day outside,” and my insecurities would immediately lead me to believe he’s trying to hint that he wants to be outside away from me. I’m working on it; I know this is a weird character flaw, but it’s part of me. So . . . sometimes, I have exactly zero patience with Joe’s complaints. I get it. I’m being a jerk. Don’t worry- I’m self-aware. You see, Joe has aches and pains as well. This shouldn’t be a surprise to me, but sometimes it is. In my own struggle with chronic pain, I sometimes forget that non-chronic illness folks (muggles, as I like to call them) have their own struggles.

At my worst, I’m almost offended that Joe has the audacity to tell me he hurts. I’m irritated when he tells me (to be fair, he’s telling me for the zillionth time- sorry, snark attack) that his shoulder hurts from an old weight lifting injury or that he has a headache. Don’t get me wrong. I love my husband. I have no desire for him to ever hurt or be uncomfortable. If I had the ability to take all his pain on myself I would- but I would probably act like an obnoxious martyr in the process. Being sick puts a strain on any relationship. Being perpetually sick basically gives your marriage/ relationship an eternal toothache. It’s not easy. As much as I love my husband and never want him to be in pain (misery does not love company- I have no idea what kind of sadist came up with that idea), I’m sometimes offended that he is so brash as to tell me about his “muggle maladies.” I feel as though he is disregarding my struggle if he tells me his shoulder hurts. I feel like I’m being minimized if he feels bad on a day when I’m also struggling. Again, I know I’m wrong, and I’m trying to grow. However, we sometimes show our ugliest self to those we love the most. (If you don’t believe me, think about how we all acted to our parents when we were teens.)
Getting over myself online.
As a person who spends a lot of time isolated because of chronic illness, roughly 70% of my life occurs through social media. I’m not ashamed by that, because my support groups and online friends have helped me find strength for this fight, and I’m very grateful for their support. However, there’s a tendency in online forums to want to be sickest. I feel like I have slayed this particular dragon to some extent, but it seems worth mentioning. Often, as people with chronic illness, we go to social media forums seeking understanding. I would venture to say that no one in an online support group got there while thinking, “I have all the understanding and support I need in my life.” Everyone there wants understanding. However, sometimes in the quest for understanding, we can get a little competitive. In our desire to have others understand why we struggle, we sometimes try to eclipse each other. I remind myself frequently that while it’s great to empathize with others, there’s no need to share my personal experience all the time. Some friends just want to be heard, and that’s valid as well.
Ultimately, I’m a work in progress. I have worked through some of the emotions of being chronically ill, but there are new feelings and mental dragons to slay every day. While my own physical workout plan isn’t exactly impressive, I’m adding the mental feat of getting over myself to the list. It’s not easy- and some days it feels almost impossible- but my health, my relationships, and my happiness are worth it.
(I’m stopping here, because the All-Star game is coming on- Go Braves!)
What about you? Are there areas where you struggle to get over yourself? It’d make me feel way better to know that I’m not the only one.
Peace, love, and health.

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I’m not always Pollyanna.

So, I’m not always Pollyanna. Don’t get me wrong. I try to look on the bright side. I remind myself that this exact moment of emotions and self-pity won’t last forever. Joe and I are known for being the people who have figured out how to make the best out of bad situations. That’s who we are- and that’s what we do. But, some days it doesn’t happen.
Some days I’ve been awake most of the night with aching joints and tingling arms and legs. I’ve slept fitfully at best. New neurological issues haunt my body- some which I’m not comfortable enough to even write about yet. I feel like I am begging for help that isn’t coming, and I’ve been down this road enough times to know that it’s a long one. Today is a day where I’m aware that even if my diet is perfect and I combat all my inflammation issues, my body will still be affected by this disorder at the most basic cellular level. I know there aren’t enough trips to the gym to enable me to enjoy Disney World in a couple of months without the aid of a scooter. I even realize that holding my body together for a week of vacation is going to require an effort of epic proportions.
I’m not trying to be negative. I don’t write this for pity. I don’t want anyone to feel like they have to encourage me to keep going on (though I appreciate all those who have done that in the past). I won’t quit. I know this feeling won’t last forever. However, today I’m sad. I’m so pitiful, in fact, that Joe is cooking lunch and bought me surprises at Walmart (a Frozen toy, Saved by the Bell t-shirt, and chapstick- I have simple taste, friends.).
My point is- it’s okay to be sad sometimes. You can’t live in the valley of despair forever. I’m not suggesting anyone live a life of self-pity, because that requires more energy than any of us possess. However, give yourself permission to mourn your losses sometimes. Tomorrow, I start with a new physical therapist. Wednesday, I get a haircut. Friday, Joe and I have a date night scheduled. This week won’t be a waste- I won’t let it. But, today, I’m tired. I’m a little sad. I need girly movies and puppy cuddles.
The Braves come on in less than hour. The lunch Joe is cooking smells highly edible. Today won’t be the worst one ever, but it’s a bit more complicated than most. (Even this blog is short, because my fingers refuse to do what my brain is telling them. What the heck, body?) Occasionally, I feel like a fraud, because I encourage everyone to try to make the best of living the chronic life- and, to be honest, occasionally, days like today happen. So, here I am. I’m being totally honest with you, and letting you know I’m drowning in self-pity today. I promise I’ll return to your regularly scheduled Crazy, Chronic programming soon. But, today stinks, and sometimes making the best of it means admitting that and having the best sad, lazy day possible.
Peace, love, and health, friends.
Does anyone know if “Pollyanna” is available on Netflix or Amazon Prime? I need an outside, sunny disposition.

When People Say, “You Don’t Look Sick.”

Every person living with a seemingly invisible illness has lived this scenario. Maybe you’re speaking to a distant family member when it happens. Perhaps you run into a former classmate or friend from work. It could be the sweet lady who sits in front of you in church. Regardless, we’ve all been in those situations where someone says, “You don’t look sick.” It’s a double-edged sword of sorts. On the one hand, this person thinks they’re paying you a compliment. On the other, it only adds to the invalidation we often feel. So, let me make it clear to all those who aren’t living with chronic illness. I think I can safely speak on behalf of all those with invisible illnesses when I say- Please, for the love of all that is good and kind and understanding in this world, stop saying we don’t look sick. It just isn’t conveying the nicety that you’re trying to insinuate.

For instance, if I “look healthy,” there’s been some serious effort that has gone into that façade. I begin preparing to go into public hours before I go. I know there will be people who try to diagnose my current situation based on how I look that day. I save myself effort and aggravation if I try to look like everyone else. This has nothing to do with make up or wardrobe choice- it has everything to do with waking up in time for my medicine to start working before I go in public. It is about me achieving a manageable blood pressure and often using enough heat or ice to make my joints feel functional.

Let me try to explain. I look mostly healthy. Don’t get me wrong- I’m exceedingly aware of all the ways illness keeps me from measuring up to society’s standard of health. However, I look like every other thirty something for the most part. This means when I see doctors I often feel like I don’t meet the bar for what is “sick enough” for them. I typically feel that my smile or laugh or even pleasant disposition (let’s be honest, that comes and goes) inhibits me from getting the care I need. Quality of life is not easily quantified, so I often feel like it is being determined at face value rather than by my actual experience. It’s frustrating. So, when you tell me I “don’t look sick” you’re listing another problem that keeps me from receiving care- rather than giving me a compliment. I completely understand that isn’t your goal; however, I would be lying if I pretended that I perceive that phrase as some sort of compliment.

If I dig into that phrase a little deeper, I’m able to understand why it strikes me as hurtful so quickly. When we say that someone does not look sick, we are essentially telling that person he/she has no obvious disability. This means as my illness progresses, and I inevitably begin using a walker or wheelchair, I will start meeting society’s standard of looking sick. I won’t necessarily be any sicker than I am right now. However, as my mobility changes, I will meet the definition others expect me to fit to be “sick enough.”

Please, understand that I am not one to nitpick over semantics. If you say something to me with the best of intentions, I will do my best to perceive it as you intended. I am not trying to make anyone hyper-aware of their language. However, in this world where I believe all decent people are called to learn how to constantly be better and to make their language as inoffensive as possible, I want to challenge you to say something different. In all reality, it’s not necessary to comment on how anyone looks anyway. Try asking someone how things are going- and genuinely wait for a response. Maybe tell someone that you are glad to see them- rather than invalidating their illness, you are letting that person know you value your time with them. I feel like all of us are above commenting on someone’s physical appearance.

Oh yeah, and if you make a mistake and accidentally tell someone they “don’t look sick,” no worries. All you must do is add some empathy. Follow up with “but I understand that you really don’t feel well.” See? That’s all it takes. I promise- I will always appreciate your empathy and understanding.

Peace, love, and health, friends.

What on earth am I supposed to eat?

Around Christmas last year, I realized a painful truth- I had fallen victim to leggings. How does one become victimized by leggings, you ask? I put on jeans and realized that without the comfortable stretch of elastic, I could no longer get into my normal size. Given that I truly hate shopping for jeans, I decided I would lose weight rather than buy more.
So, I began researching diet plans. I’m sure some of you are thinking, “Why don’t you cut back on junk food and start working out?” Well, it’s a little more difficult. First, my exercise possibilities are seriously limited by joint dislocations. Also, I needed a diet plan that allowed me to eat the sodium I need to maintain a sensible blood pressure. So, after a lot of research (and by research, I mean I consulted Dr. Google- not an actual nutritionist), I decided to try the low carb diet. It was great. I ate eggs and butter and bacon, and I still lost weight! My jeans fit. My husband was thrilled that we were eating meat and eggs for almost every meal. It was a beautiful thing.
Then, at the end of February, I had labs drawn and realized my cholesterol had almost tripled from December until then. After a fairly one-sided discussion with my cardiologist (where he reminded me that EDS and POTS are not exactly compatible with strokes and heart attacks), I started cholesterol medicine and committed to no longer eating meat.
Poor Joe. He went from eating meat at every meal to trying soy hot dogs (which he actually prefers over “real” hot dogs) and lentil shepherd’s pie. One week I was preaching about how our bodies need animal fat- the next week, I was telling him how pigs are slaughtered. This poor man has been the real victim in my dietary indecision.
Here’s what I’ve learned- everyone seems to have strong feelings about how we’re supposed to eat, but I’m not sure anyone actually knows what they’re doing. A few days ago, I posted in an EDS forum asking for advice for recent digestive issues. First, let me say that I was thrilled with the number of responses I received. Everyone was so kind and genuinely trying to be helpful based on their personal experience. However, I couldn’t help but laugh at the range of answers I received. Go vegan. Eat meat. Eat more bananas. OMG, don’t you dare eat bananas. Potatoes are evil. Eat all the potatoes. Eat some yogurt. Dairy will kill you. Eat low carb/ high fat. Eat high carb/ low fat. Then they started using words and non-words like “histamine, alkaline, and FODMAPS.” What in the world? Is everyone as confused as I am?
Remember a few years ago when we were convinced that everyone should be gluten free? I tried that for 5 months with very little success. But, at least that sort of made sense. Now, I’m clueless. Twenty-five years ago, I had to drink milk every day. I think there was some part of Parenting 101 in the 80s that said children had to drink milk or you had failed. Now? Milk is frowned upon. Get your milk from an almond or a coconut, people. But, as with all things nutrition, I can’t actually tell you why you shouldn’t drink milk/ eat dairy. It’s just a thing we’re saying.
I say all this silliness to make this point; no one has all the answers. There are those who will blame your illness, symptoms, mood, or hair color on poor eating choices. But, in fairness, I doubt that any two of those “food blamers” would actually agree about what is/ isn’t healthy. I’m trying to fuel my body the best I can. My jeans currently fit. (Okay, I’ll try them on again at Christmas to check.) I don’t eat meat- even though I just made a pot roast that smells delicious. The only thing that I can eat without getting nauseous right now is a baked potato. I eat too much cheese- even though it makes me feel awful. (But, seriously, y’all- cheese is delicious and worth the sacrifice.) I’m headed into football season, and I know that game day food options for a vegetarian will consist mostly of French fries. We’re doing our best- even when the “best practices” for healthy eating seem to be changing daily.
Peace, love, (organic bananas) and health, friends.

This one’s for the teachers who can no longer teach . . .

Back to school time is one of my favorite times of year. I love buying crayons and pencils far more cheaply than any other time. I enjoy the enthusiasm of a second-grade girl picking out the perfect backpack. (In my day, kid, we had Lisa Frank Trapper Keepers, and they were the bomb.com.) I appreciate a clean classroom that shows the tireless efforts of the janitorial staff to prepare the building for young learners. And, I’m borderline obsessed with classroom decorations. (Seriously, parents. If your child has a teacher that has decorated every inch of his/her room, please comment to the teacher on how amazing your child’s learning environment looks. Those decorations are time consuming and EXPENSIVE- and more than likely came out of the teacher’s personal funds.) I have loved this time of year since I was old enough to join my older brother for back to school shopping when we were kids.
Now, though, it’s different. I still love the energy and hopefulness of both teachers and students at the beginning of the year. I still enjoy hearing about first days of school. I’m thrilled that my social media is filled with teacher friends’ pictures of their classroom for this year or parents’ pictures of their little ones headed off for the first day. I even look forward to taking a super obnoxious “First Day of School” picture of my own absent-minded professor (and husband) when he heads back to the classroom. There are aspects of this time of year that make me smile, but the fact remains that this time of year hurts.
I am a teacher- or I was, at least. Mentally, my calendar still runs August to May rather than January to December. I still have nightmares where I’ve missed the first day of school or I have a class of 40 students who won’t listen to anything I say. But, if I’m being honest, I’m also haunted by a dream where I go back to work, and I’m a teacher again. In the dream I keep saying, “I never thought I’d be well enough to do this again.” Then, I wake up, and my shoulder is dislocated and my heart is racing, and I realize I’m still in the same body that disabled me more than four years ago when I taught my last class.
I’m not complaining, really. I’m certainly not trying to put a damper on anyone’s back to school enthusiasm. I’m simply saying to all those who feel especially vulnerable at back to school time, I feel you. I feel your tears. I feel your mourning of unrealized future plans and dreams. Most of all, I get it. I understand how it feels to simultaneously be grateful that you’re able to stay home and focus on your health- all while being enraged that your body has demanded that of you. I understand how it feels to want to hide from your former colleagues because of the shame of “not being able to hack it”- all while hoping they’ll tell you about their classroom experiences so you can live vicariously for a moment. I understand what it means to hurt this time of year- even though it’s one of your favorite times of year.
I don’t have advice on how to handle this hurt, because I’m in the middle of it. I know that it gets better with time- I haven’t openly wept in the back-to-school section of Wal-Mart this year, so that’s progress. I don’t know when or how broken hearts heal. I imagine this will always hurt a little- especially at this time of year. So, while I continue to try ‘to bloom where I’m planted,’ I’ll be the first to admit that where I’m currently planted hurts, but I’m not the only person living that reality. So, former teachers, school employees, and students who can’t return to class for whatever reason this year, I feel your pain, and I’m here. Maybe if we keep our heads down and watch a lot of movies on Lifetime, August will pass quickly and painlessly.
By the way, my absent-minded professor has requested to wear a Spiderman costume for his first day of classes, because he saw it in a Wal-Mart back-to-school commercial. (Goodness, this guy . . .)
Peace, love, and health.

Being a Sick Perfectionist

This morning I stood in my bedroom for a full minute trying to wrap my head around the amount of laundry, luggage, and shoes that currently litters the floor. It’s not all mine, but a fair percentage certainly is. Things like this drive me bananas. I like to have everything in its place at all times, but there are times when I lack the energy to put it there.
I’m a perfectionist. Don’t misunderstand- I am ridiculously far from being perfect, but I always have a very clear picture in my mind of how things are supposed to be. When reality doesn’t match my desire, I get stressed. I’ve always been this way. When I was a kid, I wanted my books arranged on the shelf in size order. As an adult, I have very particular views about the direction the toilet paper must turn. (Time out here to say that I have 0 understanding of people who don’t even put the toilet paper on the roll- I’m looking at you, husband!)
Unfortunately, my body can’t always keep up with the demands of my brain, and I have had to let a few things go that I never would have dreamed I would. For example, my towel closet (I think I’m supposed to call it a ‘linen closet,’ but we just aren’t that fancy here.) is a mess. In the perfect world where I have plenty of energy, I would fold everything neatly. Towels would all face the same direction, and there would be a stack of white towels and a stack of multi-color towels. In reality, everything in that closet is clean, and that’s all I can promise. I’ve developed a few general rules to keep this perfectionist as calm as possible- and to keep me from threatening my husband with bodily harm. (See what I mean? The man is an animal. PS- This is NOT my bathroom; it’s his.)

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Decide whether the issue is truly a matter of right and wrong.
When you’re bothered by someone’s actions, it can sometimes feel like a personal attack. It typically isn’t. For example, Joe has a strange pile of assorted pajama/ lounge clothes in the corner next to his nightstand. That pile makes me crazy. I can’t conceive ever not folding clothes when I’m not wearing them. There is an illogical part of my brain that tells me sometimes, “He just does this as a passive aggressive attempt to irritate you.” You know what? That’s not the case. The pile of clothes just does not bother him, so he doesn’t think twice about it. If it’s really bothering me, I ask him to minimize the mess, and he has never failed to do so. There isn’t a rule that says “comfy clothes” must be folded when they’re not in use. No one is trying to personally wrong me by not following my imaginary rule. This is not a battle I’m willing to fight.

laundry

Ask for help- even if it doesn’t feel helpful.
My perfectionist tendencies tend to make me cringe when it comes to asking for help. Why? Because the person helping doesn’t do things “right.” Again, these are typically not matters of actual right and wrong- but more matters of how I want things done. I tend to go back and forth between saying, “Joe, will you help me with laundry?” and “Never mind, I’ll do it. I’m picky.” Now, occasionally my concerns have warrant- he has put my “Hang to dry” clothes in the dryer a couple times. But, typically, it’s stuff I can learn to deal with- like folding tshirts down the middle instead of in thirds, as I prefer. Do I really care if I walk around with a crease down the front of my shirt? Probably not.

Laugh at yourself.
Sometimes I have to step back from a situation and laugh at how uptight I’m being. I’ll even ask Joe, “Am I being a little crazy right now?” (He always answers that question way too quickly.) I can recognize how silly it is that I cleaned out a closet before we had friends over to watch the Super Bowl- even though there was absolutely no reason for our guests to look in our closets. I can even laugh at how ridiculous it is that I refuse help when I’m physically incapable of completing a task. That doesn’t make sense- at all.
Friends, if you lean toward being way too worried about insignificant things, the chronic illness life will be especially difficult for you. I’m learning to let some things go. I truly don’t care how things are put in the dishwasher, (Unless my Harry Potter cups are in the bottom- because they will melt, and I won’t be able to celebrate my Hufflepuff-ness daily.) My house will always be clean (or clean-ish), but it will never be spotless. There are probably a few pairs of shoes peeking out from under our bed right now. My kitchen counters probably have a few crumbs on them, and there’s a pile of laundry at the base of the stairs (that lead to the laundry room), because I lack the energy to actually carry clothes downstairs. In spite of all this, I’m sitting on the back porch and typing at the computer without hyperventilating. If I’m learning to deal with this perfectly imperfect life, so can you.

Peace, love, and health.

Rare Disease in Small Town America

The shower head in mine and Joe’s bathroom won’t stop dripping. It’s incessant “drip, drip, drip” keeps Joe and I awake at night. I catch myself nodding my head in time with the drips. It has essentially become the metronome of our existence at home. We’ve tried everything to fix it. We turn the shower on and back off again. Sometimes that slows the dripping- other times it gets worse instead. We’ve cleaned the shower head and the on/off lever. Sometimes we push really hard on the nozzle in hopes that we’ll make the shower completely stop running water. It doesn’t work. Nothing works.

Now, some of you are saying, “Why don’t you change the shower head?” Well, that’s a fine idea, but it’s not exactly in mine and Joe’s skill set. You see, Joe and I have a variety of gifts and talents- none of which include plumbing. I mean, technically, Joe fixed our sump pump a couple months ago, but he used a couple dumb bells and duct tape to do so. I’m not sure that solitary experience makes him qualified to change out shower fixtures. I once fixed the toilet chain in a college dorm toilet (Seriously, Cumberland College, why was I fixing my own toilet?) with a paper clip, but again, that’s hardly professional experience. It has come to this- we need a real, licensed plumber. That comes with its own set of difficulties. It takes days of sitting around the house before a person actually shows up for non-emergency water problems. “Real, licensed plumbers” are way more expensive than mine and Joe’s pseudo- expertise. At this point, we have just accepted that the shower drips, and that’s a strange quirk of our home.

Why do I think you care about my plumbing woes? Well, I don’t suppose you do. However, the drippy shower has become my constant analogy for living life with a rare disease. My body has several medical “quirks.” The quirks are the background noise for every day. But, at this point, I don’t have the time, energy, or money to address the issues. Much like my dripping shower faucet, my aches and pains have become such a part of my existence that while I’m not happy with the situation, I’ve accepted them as part of life. My pain is not adequately managed, and I don’t always deal with it well.

However, small town medicine is about as effective with managing a rare disease as Joe and I are at handling our plumbing situation. I have great doctors, really. I am sure they are great with managing many common illnesses. I feel like if I were a typical patient and went to any of my medical team with strep throat or high cholesterol or any number of other common problems they could handle it beautifully. Let me be clear- my frustration is not directed toward local practitioners. My frustration lies in the fact that awareness is lacking, physician education is lacking, and I’m the one suffering. Unfortunately, when you’re a “zebra” in the medical community, your problems are anything but common. Even when my complaints are “common” there’s always a rare disease (and its complications) to take into account.

The people that are equipped to help me (you know, the ones who have actually heard of my illness?) are hours away. They’re in clinics with a two year waiting list. But, I’ve never really had a medical issue that I’ve thought, “Wow. This should probably be addressed 24 months from now.” That’s not how illness works either. It’s complicated. It really is. For my friends with complex medical issues, medical care is pretty much a gamble. We are begging to be heard (drip, drip, drip), but we are blending in with the masses.

I get it. I don’t expect that any doctor in small town America is an expert in any rare disease. I’m not blaming doctors for this discrepancy. I’m simply saying this life is difficult. My medical issues aren’t easily addressed, and I am tired of being turned away. My illness is a constant dripping that keeps me up at night- praying that at no point does the drip turn into a gush- and knowing that if it does, I’m poorly equipped to handle the fallout.

Peace, love, and health.