Tag Archives: chronic fatigue

Sleep.

I’m really tired. I’m always tired- this is hardly a revelation. But, if I’m being entirely honest, I have the absolute worst sleep habits ever. I don’t apologize for my strange relationship with sleep, though, because I have done everything within my power to help the situation- to absolutely no avail.
Here’s where I get around to making a point. Please, (please, please, pretty please, with melty cheese on top) do not cast judgment on the sleep patterns of those with chronic pain. Occasionally, I hear my chronic illness/ pain friends commenting about how their family/ friends have told them they would feel better if they would sleep on a normal schedule. While I agree that would be super fabulous- are you actually kidding me? Do you truly believe anyone chooses to stay up all hours of the night? Of course not. When you don’t/ can’t sleep your mind becomes victim to all the “what ifs” of your condition, relationship, and general life. Who would choose to do that? No one.
Now, don’t get me wrong. I don’t think chronic pain patients are the only people who can’t sleep. I know mental illness and hormonal changes affect sleep patterns. I’ve heard that my parents of newborn friends are rather sleep deprived as well. Joe has sleep apnea, and sleeps with a CPAP. It’s a sleep disorder. That’s another legitimate concern. I’m truly not trying to act like I’m the only person with a sleep concern up in here. (Although, Joe sleeps like a sweet angel baby once he dons that CPAP mask- as if there’s never been a sin to enter his blessed life, and I’m a little jealous.) I’m sorry. I really am. I feel your struggle, and I’m not trying to detract from it.
But, seriously. To all the people who feel I- or my other chronic illness/ pain friends- should just go to bed at a reasonable hour, please keep this in mind:
When I go to bed at night, I am quite literally putting myself into a device of serious discomfort. If I lie on my left side, I have to worry about my left shoulder dislocating. More specifically, I know my left shoulder will dislocate if I don’t move to another position quickly enough. If I lie on my right side, I’m lying on the hip that dislocates. Even if it doesn’t dislocate- it hurts. It really hurts. If I lie on my back, I lose feeling in my arms and legs- which makes my 37 nightly restroom trips almost impossible. (Seriously, you try walking on numb legs.) I don’t even try lying on my stomach, because my back spasms to the point that I literally can’t move to sit up. (Again, seriously inconvenient for the whole 37 restroom trips situation.)
I am a human rotisserie. I spend my nights spinning in place- hoping I will find a place that is comfortable enough to doze.
So, please. If you have opinions about what time sick people should go to sleep, keep them to yourself. It’s not easy. I assure you- we have tried every supplement, sleep aid, magic ointment, and tea. We are trying. We are combating pain, adrenaline surges, and the general fear of the unknown. It’s not easy, and I assure you- your advice about going to bed at 9 or turning off devices at 6 do little, if anything, to help. Please, give us some grace to figure all this out. It isn’t easy to live like this during the waking hours, and it when it’s dark, it gets even harder.
Chronic illness/ pain friends, please keep in mind that not everyone keeps our strange hours. I’ve found solace in online support groups during the wee hours of the morning when it’s impossible for my husband to be awake. I’ve had to learn that it’s okay if Joe is resting well during the hours that I’m trying (without success) to sleep. Joe has had to learn that it’s okay to let me sleep well past the hour that functional adults typically sleep. If you are living in a relationship that is juggling chronic illness/ pain, you have to learn to be patient while the other one sleeps. There are typically 6-8 hours of the day that one of us is awake and the other is not- just because our bodies run on opposite schedules. We are often quirky ships in the night. That is not only okay- it’s part of the balance of this life.
While we’re being very honest here, I’d like to also mention that my dog wakes me up for a drink of water (in which she must actually be walked to her bowl because she’s scared of the dark) at least three times a night, and Joe is a blanket hog. Those are very real situations in which the advice of healthy people is always appreciated. I’m considering making both of them sleep in the bath tub.
Peace, love, and health, friends.

 

Advertisements

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.

Birthday, Anniversary, and U2- Oh my!

Who am I? Where am I? Does anyone know what day of the week it is?

Seriously, y’all, we’ve had way too many holidays in the Early household. First, there was Joe’s birthday. He doesn’t ask for much- just a small party with his parents, a day in Louisville for the two of us, and a small party with close friends. Dude wanted 3 celebrations. Now, I can’t judge. I declare the entire month of September as the “Festival of a Tiffany,” so I can’t really begrudge his three celebrations. But . . . by the final celebration, I was sticking potato chips in the dishwasher. Because, when I’m tired that seems like a totally logical place to store chips.

Now, if you’d told me six years ago when Joe and I chose a wedding date that my body would eventually require a couple weeks to recuperate from Joe’s birthday, then I wouldn’t have had the wedding eight days after. But, it’s not legally possible to change my marriage date, so the next weekend was devoted to our anniversary- which happened to involve a U2 concert.

Yikes. Here’s the thing- I love music but, sort of, hate concerts. But, you guys! It was U2! That’s basically a check on everyone’s bucket list, so I had to go. The problem? I was still in recovery mode from Joe’s birthday palooza. Literally, the day before the U2 concert, I was in the recliner all day with insane chest pain. (Note- I’m not being an idiot and refusing to get a medical emergency checked. My chest pain comes from EDS/ POTS, and I have a decent understanding of its source. Over the last six years, I’ve learned this weird body better than I ever thought possible.) There were several points that day when Joe offered to sell our concert tickets on Facebook. But, it was our anniversary trip. I could have cancelled. Perhaps it would have been wise to cancel.

But, to be entirely honest, I’ve lost enough to illness. My marriage has lost enough to illness. If there is a possible way for Joe and I to do something (within reason, of course), then we’re going to do it. Friends, here’s the truth. I didn’t feel great. The concert was outside. U2 came on a couple hours later than expected. It was hot. Joe and I were both tired (him from pushing my wheelchair in 95 degree weather and me from this new phase of never ending chest pain), but we did it. We saw U2! I’ll be honest; if you watch Bono, and don’t get a little emotional at some point- you’re made of steel. I was already a U2 fan (albeit not a superfan), but I have so much more respect for that group and all they stand for. Fan girl shout out- One Republic opened for U2, and they were the bomb.com!

But . . . you know what? The weekend wasn’t over. After the concert there was still the matter of our anniversary. Fortunately, Joe and I decided to forgo the whole gift giving/ fancy dinner thing and instead spend a couple nights in Louisville. That meant I got two nights of 10+ hours sleep (Why do I always sleep better in a hotel? I refuse to admit that it might be the lack of the four-legged bed hog named Zoey that sleeps between Joe and I.) Obviously, when we made our plan, we didn’t know that I was going to be very much on the struggle bus. But, I was so grateful for those two nights of rest.

Here’s my point. Being chronically ill complicates every aspect of life. My marriage is permanently marked by the stain of illness. Joe asks how I’m feeling/ doing every single day- because my health is unfortunately a constant theme. However, Joe and I have made a commitment to having all the fun we can in our time together. Sometimes, that means taking a chance on a concert when I feel like dirt. Other times that means going honky tonking in Nashville the night before a serious doctor’s appointment at Vanderbilt. Friends, I’m far from a relationship/ general life expert, but I still have advice. Take every chance for fun. Put yourself in situations that might be hard but will also be fabulous. Obviously, make sure you’re with someone who will understand if you have to bail, but take the chance that the entire experience could be wonderful.

While I’m giving advice- here’s a little more. I used Snookie (the wheelchair) in order to enjoy the concert. That wasn’t in the original plan, but she became necessary. Once we realized that I was feeling rough on Thursday, we called the venue to see if disabled seating was available. This required us to drive to Louisville a little early in order to swap our tickets. Switching to accessible seating also meant we were on Club Level, so I could go inside and cool off under air conditioning as needed. Also, by taking Snookie to the concert on Friday, I saved what little energy I had available in order to enjoy Saturday/ Sunday in Louisville.

My memories from the U2 concert? Priceless. I wheelchair danced like an idiot. I sang along loudly and off-key with Joe. (We sort of specialize in both loud and off-key singing.) My weekend memories with my husband are just as special. This life is rarely simple, but I am so glad that Joe and I have made enjoying each other a priority. My challenge for each of you is that you take a risk in order to enjoy time with someone special to you. Maybe that’s going on a vacation to a whole new place (if so, I want to hear all about it!) or maybe that’s staying up late to watch a movie that will make you both laugh until your sides hurt. Do what works for you, but take a chance on something fun with someone who matters (family, friends, significant other).

By the way, we’ve already bought tickets for a Bruno Mars concert in Louisville this September. (Thank goodness, the Yum! Center is indoors.) The fun and insanity continue. Live it up, friends.

Peace, love, and health.

I’m Pretty Sure You Want This Book.

This (link at the bottom) is my book. Okay, technically, it’s Joe’s book too, because he did a lot of work on it. But since I’m the person with the chronic illness and this is a book about chronic illness- well, I’m a little emotionally attached. Just in case you’re thinking you don’t need this book or don’t especially want it, humor me while I make my case.

So, here are the “Crazy, Chronic Reasons Why You (might) Want to Read This Book.”

  1. It’s a beautiful love story. Okay, it’s not exactly a beautiful love story. As a matter of fact, I mention bodily functions that are neither beautiful nor lovely a couple times. However, Joe and I wrote this together. He literally saw my desire to write a book and not only encouraged it- he did a lot of the work. We talked through every chapter together before I wrote it. He physically typed a lot of the book, because my crazy, dislocating hands wouldn’t allow me. We have called ourselves #TeamEarly from the beginning, and this collaboration showcases exactly why. We work together. We laugh together- and, when necessary, we cry together. So, while a book instructing you with how to cope with very public and very projectile vomit isn’t exactly romantic, the love and cooperation that went into each page certainly is.
  2. It’s likely to boost your confidence. Do you want to know why it will boost your confidence? Because as you read through this book and experience our raw honesty, there will be times when you’ll think, “I would never be dumb enough to get myself in that situation.” See? You’ll feel smarter. Okay, seriously, this book talks about embarrassing symptoms that so many of us face- brain fog, incontinence, mobility struggles, etc. Let’s be honest- I’m about as graceful as an elephant changing underpants. I have a long history of blunders to share. I will give you tips to saving face as much as possible when your body decides to be a jerk in the least convenient of places. Personally, I always feel more confident when I have a contingency plan.
  3. People seem to actually like the book. You guys, I have reviews, and they’re not bad. They’re actually, well, great! Even more impressively, to the best of my knowledge I am not related (by blood nor marriage) to anyone who has reviewed my book. You never know when you write something if it will reach your audience in the way you hope. There’s a chance that Joe and I have been drafting and typing our little hearts out on a project that stinks. But . . . it’s beginning to look like it doesn’t. I actually believe we may have accurately portrayed this life in a way that others can relate.
  4. It will make you cool. Okay, there are many words that could describe me, and “cool” will never be one of them. I will never listen to the right music or understand pop culture references. However, illness has made me more sensitive to the needs of my chronically ill/ disabled friends. We have done our best to convey to significant others, caregivers, friends, congregations, and ‘that lady from WalMart’ how to be aware of the needs of others. And, seriously, what’s cooler than compassion? Am I right?
  5. I will appreciate your support forever. Everyone isn’t in a place where they can buy a book. I understand that completely. Please know that every word of encouragement, like, and share mean the world to me. My Crazy, Chronic Life blog audience was the driving force behind this book, and your love and encouragement help me keep my head above water on the hardest days.

Friends, each of you have encouraged Joe and I throughout this process, and we truly appreciate it. (I considered telling everyone that to show our gratitude Joe would be available to sing at the wedding of anyone who buys our book. Strangely, he didn’t consent to that.) So, one more time for the people in the back- my book link is below. Try an excerpt. See if it’s for you- or if it might help someone you know.

Peace, love, and health to each of you.

T-5 Days Until Disney World!

I woke up to one of the sounds of summer this morning; Joe was singing. (Let’s all have a brief moment of reverence for the loss of my quiet morning routine.) He is a morning person, and I’ll be honest,  I think God’s sense of humor has never been more evident than it is in the fact that I married a person who sings in the morning. Ugh. All the ughs. All griping aside, the sounds of summer mean two things. 1. The college semester has ended, and Joe is home for the summer. 2. It’s time to go to Disney World. (I promise- I’m really excited about both things.)

We are five days away from going to Disney. Joe is totally packed, and I have refilled all my meds- so essentially we’re ready to go. (Yes, I realize I have to pack clothes, as well, but seriously, Joe would rather have me medicated than wearing clean clothes.) I’ve already written about the preparation process of Disney and general advice (Here.), so I’ll spare you the monotony. However, I want to share the pre-vacation prep schedule with you, because I know I’m not the only one in our community who deals with this.

1. Packing. I hate packing.

Joe is totally packed. I don’t even have enough clothes to be decent for a week. Here’s the struggle. First of all, why are women’s shorts so indecent? Don’t get me wrong; I think women (and men) should dress however they’re comfortable. I’m just not comfortable in shorts that’ll make me feel like I forgot to wear any. Also, there’s the whole wheelchair situation. (For those of you new to the crazy, chronic game, my wheelchair’s name is Snookie, and she’s infinitely more fabulous than I’ll ever be.) Some shorts are just not meant for sitting, and my body was clearly not meant for standing. It’s a colossal conflict of interest on the best days. So, yeah, I have to buy shorts within the next five days in my teeny tiny town. Ick.

2. I’m in energy save mode.

My house could stand to be cleaned. Some of the clothes Joe packed could use ironing. You know what? It’s not happening unless magical fairies bestow me with their abilities. That’s okay. It really is. I’m doing everything I can to reserve my energy for the vacation I’ve been making payments on since last July. I’m sleeping 10+ hours. I’m napping when I want to. I’m generally refusing to do anything that I don’t absolutely have to do. Fortunately, Joe is totally cool with that. He actually requested that I save as much energy as possible, and I’m grateful for the suggestion.

3. Planning for the worst- hoping for the best.

Let me be clear. I have no plans of having a health meltdown while I’m in Disney World. Clearly, Joe and I wouldn’t plan a vacation that we didn’t think I could handle. However, I’m trying to be practical. I’m packing books in case I don’t feel like leaving the room one day. I’ve taken every possible precaution for general comfort. (Here’s to hoping my body doesn’t throw a huge EDS tantrum!) I have rescue meds, cool packs, KT tape, and anything else that might be useful. I’m not being negative. I think my week at Disney will continue to be my favorite week of the year. At the same time, I don’t want to be totally unprepared for something that I knew could possibly happen. Besides, who really wants to buy a $9 bottle of aspirin in the most magical place on earth? If my body decides to throw a curve ball, I’ll be prepared (unlike my Braves . . . smh).

I’m excited- can you tell? I can hardly wait to go. I’m aware that it might not be the type of perfect healthy people imagine, but I can almost guarantee that it’ll be Crazy, Chronic Perfection. At this point, that’s all I ask. If you want to follow me on my Disney journey, feel free to friend me on FB (Click here- be my buddy!). I can also guarantee that I’ll upload pictures all day every day, and I’ll try to keep you informed on the whole traveling with a disability thing too.

Hugs to each of you always!

Peace, love, and health.

Wheelchair Etiquette- The Continued Saga (and Trevails) of Tiffany and Snooki

Every time I spend a couple days on wheels (AKA in my wheelchair, Snooki) I realize that the world is sadly lacking in basic wheelchair etiquette. Now, I’m not going to attempt to answer questions like, “Do I hold the door for someone in a wheelchair?” or “If they seem to be struggling, should I offer to help?” The truth is- I have no idea. We are as varied and different as the same number of able-bodied people, so how could I possibly know? (But, please, if you see me struggling with a door whether in a wheelchair or not, please help! I’m probably deciding if entering/ exiting is really worth dislocating my shoulder.) However, there are apparently a few things that need cleared up to make my (and others’) rolling days a little simpler and possibly less frustrating. Below you will find a few helpful hints about what not to do upon seeing someone in a wheelchair.

Hint #1- Do not touch the wheelchair user.

Just don’t do it. Unless you are shaking hands, giving a high five, or fist bumping . . . there’s just no reason to touch a person you do not know. Let’s think of it this way- You walk into a room. Everyone else is taller than you (Fun wheelchair fact- you’re stuck at butt height to all adults when you’re in a wheelchair. Lovely, just lovely.). Now everyone starts patting your head, bumping into your legs, and tickling your tummy (Yes, that has actually happened to me.). My guess is you would start feeling a little claustrophobic and ultimately disdained. It’s hard to feel as though you’re on equal footing with the rest of the adults of the world, when the other adults of the world treat you like a particularly ugly puppy.

Hint #2- Do not talk in funny voices to the wheelchair user.

Again, there are exceptions. For example, my voice is just funny, in general. (Oddly reminiscent of Velma from “Scooby Doo” . . .) That would not keep me from speaking to a person in a wheelchair, obviously. If a normal adult conversation necessitates using a funny voice, by all means, please do. We wheelchair riders (much like “normal” walking folk- *gasp*) enjoy a silly story. What I am talking about is using a voice that isn’t meant for adults with an adult simply because he or she is in a wheelchair. Case in point, while rolling into a football stadium with my husband, a security guard spoke to me in a (not at all impressive) Donald Duck voice. It some sort of- “Quackety-quack. I bet you’re not *quack-quack* sneaking anything in! Quack!” Now friends, tell me how that is EVER appropriate. I mean, it’s strange enough that he would assume that because I’m in a wheelchair I wouldn’t possibly think to sneak in contraband. (For the record, I was NOT sneaking in contraband though.) It’s even more strange that he used a duck voice with an adult. Again, it’s hard to feel like you’re not inferior to the walking world when the walking world is using baby talk to speak with you.

Hint #3- Do not attempt to diagnose the wheelchair user.

This is a tough one. To be entirely honest, before I became a part time Snooki user, I probably assumed that people in wheelchairs could not walk at all. I, on the contrary, go for walks in my neighborhood, walk to get my groceries, walk inside my house, but use a wheelchair for long distances or particularly unfortunate days health wise. I realize this is confusing, but I also realize this most certainly does not mean I am faking my need for the Snooks. Not long ago while using the wheelchair, I stood up to walk into the bathroom (because opening a bathroom door while trying propel myself through it will most certainly end in a dislocated shoulder). A young man 10-15 feet away said, “Oh my God! She can walk! She was just using a wheelchair, but she can actually walk.” This doesn’t make me angry; it’s not like he insisted I crawl to the bathroom. It’s just awkward. Yes, I can walk; the walk to the bathroom is perfectly manageable for me. It isn’t manageable for all people using a wheelchair. Much like some people who can walk long distances are capable of running a 5K and other aren’t. What frustrates me, though, is that people who are not using a wheelchair somehow feel qualified to comment on who should and should not use a wheelchair- as though being able to walk qualifies them for such assumptions. What if people in wheelchairs started calling out everyone with a limp or who stumbles? “Hey, hey you? You stumbled. You aren’t good at walking. I’m in a wheelchair, so I know this. You should be in a wheelchair too!” See what I mean? Being in a wheelchair does not make me qualified to diagnose a walker as incapable of walking, and being a walker does not make someone capable of diagnosing a wheelchair user as not needing the wheelchair.

Hint #4- Teach your children that people in wheelchairs are, um, people (who happen to use wheelchairs).

One of the most awkward moments I face in a wheelchair is when children are involved. You see, I don’t mind at all when a child says, “What’s wrong with you?” or “Why are you using a wheelchair?” I’m not going to give them a long, graphic response. I’m going to say, “Sometimes I can’t walk very far, and my wheelchair helps me to be able to go the places I can’t walk to. I named it ‘Snooki’.” That’s it. I get to encourage a child’s curiosity, and a child learns that someone who looks different isn’t something to fear. Everyone wins. But . . . when a child says, “What’s wrong with you?” and a parent/ guardian angrily shoos him/her away out of embarrassment, no one wins. You see, I’m left feeling like some sort of animal that the parent was afraid of provoking, and the child has learned that people who look different are something that makes parents uncomfortable- so they become uncomfortable too. Your child is more than welcome to ask nosey questions. If I don’t want to answer or think the answer is too much for them, I’ll ask you for help explaining. But I never, ever want a child to be afraid of me, because I’m different. It’s okay. Please let them be nosey; let them pry. It’s perfectly, perfectly fine.

This brings us to the final and most important point.

Hint #5- Look at the PERSON in the wheelchair- not the wheelchair.

Everyone one of us has something that makes us different. Even when I’m walking, I’m limping and stumbling along with dislocating hips and shifting kneecaps. There is always something that makes me self-conscious, and I think that makes me very, very human. See, that’s the thing. I sometimes feel a little like I’m step behind the rest of the adult world, because I’m using a wheelchair. But, if we could all sit down and talk, we would probably realize that we all have something that makes us feel that way. All I’m asking is to be treated like any other fellow human. When you’re meeting a fellow human in a wheelchair, don’t make assumptions about them. Talk to them just like anyone else, because we are as varied and unique as all the other people you will meet.

Finally, it took me a while to write the post- partially because Joe is researching for a new book about the subjugation of women throughout history, and he kept reading crazy and disturbing things aloud, but also because I was a little afraid. You see, I would rather you fail to follow ANY of my hints than for you to avoid me for fear of offending me. I’m guessing that most of my friends on wheels feel the same way. I’m not easily offended; I’m not even particularly sensitive about the wheelchair. If you say something completely offensive, I’m more likely to ask you to clarify or just to give you the benefit of the doubt than I am to walk away and meltdown. At absolute worst, I might make a joke. Recently, Joe was pushing me in Snooki, and we were attracting a lot of stares. Joe’s response was to yell, “Hodor! Hodor!” as he pushed me. (Game of Thrones fans, you’ll get the reference.) I will never try to make you feel bad or less than anyone else. I promise. All I’m asking is that all of us try to see each other as fellow humans- crazy, chronic illness humans or not.
Peace, love, and health friends.

Wedded Bliss Can Be Hit or Miss

There was a moment in the first months after Joe and I married that I realized that the whole marriage process had left me completely unprepared for marriage. I was cleaning the bathroom floor in our teeny apartment (Seriously, do males think the toilet is merely a suggestion for their urinary pursuits?), and the absurdity of the whole dating/ engagement/ wedding process hit me. Joe and I had a great time dating. We went to sporting events, festivals, historical landmarks, . . . truly anything and everything we wanted to experience together we did. Then there was the engagement/ wedding time. It was filled with teas and brunches, hair appointments and fake nails, vows and ceremonies. And, essentially, none of those things occur in real life. Real life (at its rawest and most real anyway) is filled with laundry, mystery stains on the bathroom floor, and the never-ending need to prepare another meal.

Don’t get me wrong. Marriage has enough redeeming qualities to make up for the gag-worthy moments. It’s a great feeling to know that your best friend will be beside you as you fall asleep at night or that the person who always makes you laugh will be joining you for dinner forever. I wouldn’t trade all that marriage is in order to get rid of the responsibilities that come along with it. I just realize there is very little leading up to marriage that has anything to do with the actual act of being married.

Before I got married there was a bridal brunch- now there is coffee and Facebook.

Yep. There was a legit bridal brunch in my honor before my wedding. There was a yummy coffee flavored punch out of a beautiful crystal bowl. I wore heels and pearls and wiped my mouth on dainty embroidered napkins. I was fairly confident I had reached the pinnacle of being a lady. Now, I stumble out of bed at the last possible minute I possibly can and still make it to wherever I have to go. I wear an odd assortment of Joe’s clothes (because boy sweatpants and t-shirts are the most comfortable articles of clothing ever). I drink coffee (or I make coffee and leave it setting next to me because I’m too tired to remember to drink it) and peruse Facebook statuses in silence. I don’t talk, and if Joe speaks (or God forbid, sings) I grunt in response.

I was given a beautiful collection of silver, china, and crystal. We use paper towels as much as possible.

When you get married you get a lot of gifts that you will probably never find a reason to use. I remember receiving beautiful crystal pitchers and china pieces and imagining the elaborate dinner parties I was going to have. Yeah, um no. I’m not a huge fan of plastic/ styrofoam plates since they’re far from environmentally friendly, so we rely on a lot of paper towels . . . or anything dishwasher safe.

That beautiful bridal wardrobe is irrelevant in real life.

I have an awesome collection of dresses that I bought during the time leading up to my wedding. I recently loaned all those dresses out for a couple months, and I can honestly say I didn’t miss them once. All those beautiful pastel dresses are just not necessary for my life now. I haven’t had on high heels in years, and it would probably take me the better part of a day to remember where I put my pearls. During my engagement I bought those dresses because that is how I imagined a “real grown up” would dress. Yeah, I’m living real grown up life now, and it’s all about what is clean and what is comfortable.

There were solemn vows and a reverent, “I do.”

Again, don’t misunderstand. I meant every word of the vow I made to my husband. I have every intention of holding up my end of “for richer or poorer, in sickness and in health . . .,” but I had no idea what any of those things meant. I thought sickness was a temporary thing that happened then got better- or that it didn’t happen for a really long time. I thought that people were either rich or poor or somewhere in the middle- not that life went in cycles of relative comfort and then just way too many bills.

In truth, I thought life would keep running along just as it had been during dating and engagement. I knew there would be laundry and meals to cook, but I didn’t realize I would be trying to do those things (with my husband’s help- I’m not insinuating that I’m on my own in all things domestic) with absolutely no energy. I didn’t know that in order to keep up with the speed of our dating lives I would be expending every ounce of vitality and enthusiasm I possess. Life is manageable, but it’s just so very different from what I imagined.
A wedding is a bizarre way to start a marriage. It would probably be more appropriate if the soon-to-be- wed couple spent a week on the clean-up crew of a high school football camp. I mean, at least there would be a little more on the job training for the messiness of life than what a wedding offers. However, because we are all a bit unprepared when we get married . . . that means it’s not just me. I’m not the only one that jumped into the deep end and can barely tread water!

You see, when I became sick after I got married, I was so ashamed. I felt like I had tricked Joe, because I changed so much after he married me. It seemed only fair that I should remain the same person I had been throughout our dating life, but illness took that from me. There were so many times that I have wished I could go back before the wedding and tell Joe all that I know that- at least then he could make an informed decision.

It has occurred to me recently, however, that none of us really know what we are doing when we get married. We all enter marriage with the absolute best intentions. We plan to love our spouse the best way we know how, and we try and fail and try again and succeed a million times on our way to that goal. I’m not saying I will never feel guilty again that I stuck Joe with a chronically ill wife. There will be those days from time to time. I am saying that I have forgiven myself for getting sick and all the ways it has affected those around me. Yes, I surprised Joe by becoming sick (and staying sick) in the first couple weeks of our marriage. But, then again, I probably surprised him a million other ways too.

So, yeah, there have been a lot of surprises after Joe and I have gotten married. I wake up super grumpy. Animated movies make me cry. I get up multiple times during the night to brush my teeth. I only own about three pairs of socks. Joe forgets to close drawers after he opens them. He refuses to sleep under a sheet (but will sleep under a blanket?). He puts ketchup on green beans and doesn’t like dessert (more for me!). Obviously, some surprises are more fun than others, but I’m enjoying our life together- so I’ll deal with the surprises as they come.

Peace, love, and health.

Join us in the Crazy, Chronic Life Facebook support group by clicking the link below and requesting to join the page. (We’re accepting everyone except robots!)
Crazy, Chronic Support for Crazy, Chronic Lives