“Have You Tried Yoga?” and Other (Not So)Helpful Suggestions

I went to the gym today! I lifted some weights, walked on the treadmill, and was starting to feel pretty kickass about the whole thing.

Until a fellow gym user approached.

“Your heart rate is pretty high for speed you’re going. You okay?” he asked, concern clear on his face. This irked me for a multitude of reasons and honestly, I could write for years about why mansplaining irritates the crap out of me, but that’s not what this post is about, so I’ve benched my inner feminist for the time being. Applaud, people, she doesn’t sit down easily.

I patiently explained my conditions and he listened with the fairly standard look of concern and shock. Then his expression shifted and his lips parted. He took a breath.

Oh no.

No, please. Not that. Anything but-

“You should really try yoga!”

I feebly thanked him for the tip and left the gym with the intent of coming home and following some of my favorite barre videos to complete my workout for the day.

His suggestion is one of the most common things people, usually able bodied people, say to me and other not so able bodied people like me. At face value, it’s a thoughtful suggestion that shows a desire to help, to offer an alternative way to get or stay healthy. The issue, however, is that, unless you are my doctor, I don’t really want your advice on how to manage my illnesses. Chances are, the other lemons and spoonies of the world are also tired of this suggestion.

ableist bingo
Notice the first box? Yeah, it’s not just me.

Now, I don’t want you to think that I don’t recognize and appreciate the intention behind some people’s suggestions. As I said before, they almost always mean well and just want to help you feel better. That’s the problem, though; there is no “feeling better”. There are good days and bad days, sure, but the root of the problem with suggestions and statements like these is the lack of understanding of what a chronic illness really is and what it’s like to live with.

One of these days, I’ll get around to writing the post I’ve been meaning to write about things you can say or do that are more helpful and supportive, but today for me needed to be about voicing some of the irritations. I know so many lemons and spoonies out there with horror stories of their own. If you’re ever looking for some fun times, look up Chronic Illness Cat memes. If you laugh at them, chances are you’re a spoonie or a lemon. If you don’t really get it or if you’ve said these things to someone, you should maybe talk to the lemons or spoonies in your life and work with them to come up with some better ways to talk about their health and wellness.

In the meantime, I’m off to give this yoga thing a shot. It comes highly recommended, or so I hear. ūüėČ

Changes

This particular Sunday feels lathargic. I hit snooze on my alarm more than usual, I didn’t want to blog, I didn’t want to eat breakfast. Even sitting on the couch watching Pam play Zelda was broken up by spacing out, losing minutes to some void of attention. 

“Get your sunshine in today.” Ordered Pam and our good friend Liz. “Take selfie with you and Kato outside and send them to us.”

Kato hadn’t gotten his turn outside yet while River has been out twice, so this seemed like good motivation to head out. I grab our outside blanket, a pad of paper and pen, throw Kato on the harness and lead, and made my way out to the courtyard across the street. 

At our old place, Kato loved going outside. He would chase leaves and make friends with our neighbors, wasting hours in the sun. Today, though, he stayed glued to my side and cried until I relented and brought him back inside.

It’s one more thing that’s changed in our move from Okemos that leaves me feeling as if we’ve had something stolen from us. We don’t greet our neighbors like we used to. We don’t chat with fellow pet owners and we don’t know the names of our management. 

I hate it. 

We moved under terrible circumstances, having been the victims of escalating hate crime that made us feel as though we were fleeing our home. Our apartment in Okemos was bright and cheerful, with plenty of sunlight and fresh air coming through our windows. Our apartment faced east, so the morning sun always spilled into our living room for the cats to soak up. Our white walls were broken up with a cool blue and touches of peach from our couch pillows. We knew our neighbors, became particularly close with our upstairs neighbor, Lauren. 

I met our first neighbor last week, four months after moving to the new apartment. The floor plan of this apartment feels more spacious and the floors and appliances are all more upscale, but it’s dark and cold. We tried to bring warmth with a creamy blush and wine colored walls, but it only truly feels warm when the sun sets and we turn our lighting fixtures on. The ease of stepping outside and grilling on the patio has been taken away, replaced with walking through our dark, dull, basement hallways and up a flight of stairs to reach the outside that doesn’t ever seem to reach us. 

I keep waiting to fall in love with this new home. I’ve always struggled with change and know that change brought on so suddenly and by something so terrible was bound to leave me feeling a little unhappy. It’s only now, as the days begin to stretch longer and the breeze becomes warmer, that I’m beginning to fear that I’ll never have that fall in love moment. 

In the meantime, the sunshine is beckoning. 

I Get By With a Little Help From My Friends

I’ve been lucky enough to have a very supportive and loving family for the entirety of my twenty-six, almost twenty-seven years of life. My Mom the counselor, my Dad, the teacher, and Fruit Snack, who inspires me to work a little harder every day and is growing into an amazing individual.

But my family unit now that I’m an adult has grown. Pam and Nikki, the three of us self-titled as The Ampersands, are a family.

That means when things challenge one of us, it challenges all of us. This can be difficult when all three of us have an instinct to keep our problems and challenges to ourselves. We let pride and a sense of necessity keep us from sharing what stresses us, what causes us pain or fear, with the other two.

Lately, as I said in another post, our cost of living has become a little more daunting. We had a fantastic handle on things last month, but several large bills came in at the same time and we suddenly feel far less on top of our finances than we did before. Naturally, we each turned inward as we independently tried to puzzle through how best to handle a tough situation.

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I’m not exaggerating when I say several¬†large bills. This is just my Cleveland Clinic initial visit. Note the helpful $110.00 that insurance covered.

This is a bad habit of ours. We go off on our own and stew over the issues at hand until one of us finally caves and admits that we’re about ready to pull hair out over the situation. By the time we finally reach out to the others, we’ve driven ourselves mad.

We forget too easily that we are a family. That a problem or challenge for one of us is a problem or challenge for all of us. Inevitably, we hit a breaking point and feel as if we couldn’t possibly bear anymore stress, only to realize that it wasn’t ours to bear alone.

Accepting support is something I’ve talked about before, but I’ll never shut up about it. No matter how many times I write about it, it’s something that will always come back to me with one more point to make. The three of us are so gifted when it comes to supporting one another, but we still struggle terribly with asking for support or accepting support when we’re in need. We’re the first ones there for our friends, but seem to fight against our friends when they try to support us. As I stated, it isn’t a good habit to have and we work to improve ourselves every day. We work together, because that’s what families do.

We’re not facing anything we can’t handle. We have deep wells of support around us and safety nets to catch us if we slip as we climb ever higher towards our goal of being debt free and financially stable. I’ve been assured countless times that we are far from the first and far from the last who will fight this battle. In today’s economy, there’s more of us struggling than there are of those who aren’t. A kinship in “the good fight”.

For our little household, the dust is settling and we’re finding our way back to each other, back to the center, where we know it’s safe and can develop the plans we need to succeed.

It just takes a little help from our friends.

The Better Choices

Yesterday was the first grocery trip I took with my better health in mind. I steered away from my usual cravings of cookies and cakes, pizzas and hot dogs, and instead picked out veggies, fish, and healthier snack options. 

It was the saddest feeling, but I’d be lying if it didn’t feel pretty good to see all of the wonderfully healthy things piling up in the cart, knowing that I would feel better about myself and what I was eating with this lifestyle. Added to exercise that has kept me exhausted, but happy, and I have the makings for a much happier life with fewer symptoms and not so bad days.

We’re enjoying decent harmony in the Ampersand Household, despite the last week or so yielding some not fantastic developments that had us all feeling a little tense. We know that with patience and care, we’ll manage to figure it out without much pain or fussing.

The Cleveland Clinic trip is beginning to loom on my horizon. A full day of testing after a full 48 hours off all my medications and 12 hours of fasting and caffeine wouldn’t make anyone happy. Luckily, we will be able to stay the day before and the day after to avoid wearing me out too much.

Getting ready for school to begin has been an excellent distraction. The anxious walk to the mailbox has been both the bane and blessing of my days as I wait for the one last thing before I get my classes figured out and can dive into preparations with a clear goal in mind. 

Keep your heads up, even if things aren’t going very well. We’ll get through it together, okay?

Quiet

I feel hushed today. The feeling of being on steady, solid ground has left me, replaced with unease. There’s a sense of trepidation I can’t seem to shake off and it makes me want to go silent, get smaller and hide from view until the storm passes. 

It isn’t logical, it rarely is. 

I don’t really have words today. The blog will get its shortest post out of me. I have no point to convey, no story to tell. Today is just a practice in writing without the desire to, like exercising a muscle. 

Missable Moments

Saturday night, I ended up staying up late and doing a surprise Easter Egg Hunt with Nikki and Pam. I filled the eggs and hid them around the apartment while they waited in Pam’s room, then came out to find full easter baskets (flower pots, actually) and proceeded to find the sparkly eggs Nikki and I had bought a few weeks ago.

In the excitement, however, I forgot to take my night medications. I grabbed them out off my nightstand, even got a drink ready to take them with, but just missed the step where I actually take them. By the time I realized I’d forgotten them, it was way too late in the night to take them if I wanted to be at all functional the next day. Thus, I was up all night and dealing with pain. This gave me the rare opportunity, though, to watch the sun rise.

Our previous apartment didn’t have a very good view. It faced the building’s parking lot and another building, so our blinds were drawn the majority of the time. This apartment, however, offers a cute view of the treetops and the sky if you’re laying in bed, as I was when the dawn of Easter Sunday painted the sky in spring colors. The window was open, letting in that light, crisp morning breeze, and birds were beginning to sing. I love the sky and especially love mornings (despite being all but incapable of getting up in the morning), so I ¬†enjoyed my rare chance to watch the sun rise.

As light filled the bedroom, though, grief found me. I studied the colors of the sky, trying to name them, when a thought flitted through my mind, asking “how many more sunrises will you see before you’re gone?”.

How many mornings do I have left?

That’s the difference being terminal has created in me. Now and then, fear and sadness blossom and cause me to pause and question how many more moments do I have? How many times do I get to laugh with my loved ones? How many Easters will I spend filling and hiding eggs for Nikki and Pam to find? How many times will I wake up next to my wife?

It’s hard to face these questions. Probably the most difficult part of this whole journey, in all honesty. It’s the moment when it’s no longer about the symptoms, but about living and the eventual end. I try to seek out comfort in that everyone is mortal, we all share these moments, though maybe not with the knowledge or certainty that comes with mine. I try to be grateful, since knowing my time is limited perhaps gives me a greater sense of appreciation for the moments I do have. I try to make the most of my moments, just as anyone should, so that I miss as few as possible. Every little moment of joy becomes something worthy of celebration, even no reason at all. Living is worth celebrating, after all.

Excitement in Spades

Yesterday, I willingly and knowingly skipped blogging. I knew I was going to have an incredibly busy and taxing day, so I knew giving myself permission to not do a couple things would allow me to enjoy the day with minimal stress and symptoms.

That said, it was an incredibly eventful day, beyond even what I thought it would be.

I gained a shower chair that I put to use, allowing me to shower without someone being home for the first time in a considerable amount of time. The feeling of independence was so gratifying, I haven’t the words for it. Flying high from that, I got dressed and struck out into the world.

I had made the decision earlier in the week to attend Church in a Pub and help as much as I could, which meant a roughly hour and a half long bus excursion involving three busses, two transfers, and a decent amount of walking. I was a little nervous, but I made sure I’d hydrated well before leaving, dressed to account for any temperature craziness my body or lovely Michigan weather could throw my way, had all my maintenance/prevention medications on hand in case of any symptoms that need taming. In short, I was doing this right. The rest was up to fate.

Fate, it turns out, had a few curveballs to throw my way before I would arrive at church.

The most unpleasant was a woman making a terribly insensitive comment about my presence and the presence of multiple people of color around her. I responded as coolly as I could and managed to not only silence her, but make everyone within earshot laugh. Nothing major, I let it roll off my back.

The odd one, the middle event, was having to explain to a woman how standing downwind of a smoker while they smoke is why she is getting smoke in her face and, to rectify the situation, she could move upwind. She did not understand the concept of upwind/downwind, which I explained as patiently as I could.

The very first encounter of the day, though, and by far the best and most stunning to me. I climbed onto my first bus, bag settled beside me on the seat and a woman about my age looked over and noticed my lemon keychain. She looked at it a minute and laughed. Feeling sociable, I asked if she liked lemons.

“I just started reading a blog, lemons and spoons or something like that, and since I started reading, I’m seeing lemons everywhere.” she told me laughingly.

To say I was floored is an understatement. So shocked, in fact, that I did not say a word after that. She got off the bus a few minutes later and I scrambled to grab my phone and message Pam and Nikki on our group chat.

I hope you see this, even though I don’t know you’re name. I was too stunned to ask for it. I was too stunned to tell you it was my blog you were talking about, too overwhelmed to thank you for reading. You were an answer to a prayer I didn’t know I was praying. I’m sorry I didn’t say anything and I hope this blog helps you as much as it helps me.

Peace and love, Lemons and Spoonies! If you see this crazy blogger with the lemon keychain out and about, I’ll try to actually show my deep appreciation for your support and your time, but forgive me if I don’t. I might still be too shocked!

Relevant

Yesterday, I talked about the struggle of suffering with the invisible.

Today, I want to talk about the fear of irrelevance.

With a bad pain day combined with an unhappy fog, I decided to do something I rarely enjoy and simply sit and watch something on TV. I’m a notorious multi-tasker and usually find it all but impossible to just sit and stare at a TV. I usually need to be working on something else, keeping my hands busy or at least the half of my brain that can’t focus on the show that’s playing in front of me. Today, I picked Grace and Frankie, the new Netflix original series that dropped starring Jane Fonda and Lily Tomlin.

It was towards the end of the third episode, The Dinner, when inspiration for today’s post struck. Grace and Frankie sit in a car together, having just been thoroughly ignored by a rude and ageist cashier at a grocery store. Grace’s barely there grip on her emotions slips and she cried, forlorn, “I am not ready to be irrelevant!”.

My throat closed, my eyes watered, my face grew hot. I felt that. For completely different reasons, or maybe terribly similar ones, I felt this character’s fear and rage. Is there anything more terrifying for someone who wants to change the world than the idea of being irrelevant? Of going through life invisible, unnoticed? Unchanging and unchanged?

This is one of my greatest fears; irrelevance. It holds me close and paralyzes me with a freezing grasp of iron tight shackles, but doles out self-loathing like food to the starving. I am frozen by the fear of being irrelevant and thus I make no moves towards being relevant.

But that isn’t quite right, is it?

Today, Maundy Thursday, draws me one step closer to the end of the Lenten season where I gave up self-loathing and replaced with with self-love and the open, free bestowal of that love to others. In this practice, I have found in myself a capacity to love and accept and grieve and feel unlike anything I thought I was capable of. I have found the bonds of each and every friendship and bloodline. I have renewed appreciation for the people in my life and, for maybe the first time, I see clearly my own worth. I see what my life gives to others, what I am still capable of giving, and feel a deep and moving call to give as much and as freely as I can for as long as I can.

Relevance in life doesn’t mean earth shattering changes. It doesn’t mean going down in history or rewriting laws. It doesn’t take epics and song or to be immortal.

All life is relevant. Every moment, every life.

How can you fear not accomplishing what you accomplish by simply being?

Invisible

Imagine, for a moment, that you wake up one day and your skin has turned electric blue. You frantically wake up your partner/spouse/roommate/pet and cry “look at what’s happened to me! I’m blue!” and the person/animal you have awoken blinks, then ignores you. “You’re fine. I don’t see anything.” they tell you.

You call off work and go to the doctor and, upon arrival, the nurse asks you “what brings you in today?”.

“What do you mean? Can’t you see? I’m blue!” you reply. The nurse makes a note and nods sympathetically.

“Sometimes, that happens. The doctor will be in shortly.” They quit the room and you know they didn’t see your cerulean skin. They don’t believe you. The doctor comes in and reads from your chart for a moment, then considers you. Right away, the sigh gives them away.

“So, what seems to be the trouble?” the doctor asks coolly. You try to stay as calm as possible, but by now, you’re not just blue. Now your hair is producing an electric current, your hands and feet are highlighter green, and you can hear someone singing opera off-key. You tell the doctor, who looks you over, then goes back to their chart reading, never leaving their stool.

“That’s not what you told the nurse.” they say matter of factly. You try to explain that you were scared and didn’t really notice the other symptoms. The doctor shakes their head and sends you on your way, with a prescription that might help the blue fade a little if you’re lucky.

You’re frustrated, right? Yeah, me too.

That’s what each experience can look like when you’re dealing with invisible illnesses. You try your hardest to explain, but the message just doesn’t seem to come across to whoever you’re trying to tell. Sometimes, its someone giving you a dirty look when they see you take the elevator instead of the stairs. Sometimes, its the disappointment you hear when you cancel plans on a friend,¬†again. Sometimes, its medical professionals turning you away outright or putting you through the ringer when you have to see someone that isn’t your own doctor.

The struggle to be seen and heard when managing invisible illnesses can be horrifically overwhelming. While some get lucky, others have it harder. I was able to find a doctor who genuinely listens to me and does everything she can to help me. I have a dear friend, however, who is still fighting to even be diagnosed with EDS, even though she displays all of the hallmark traits of the disease.

Then there’s stigma. Think of the feeling you get when you see someone who appears able-bodied on one of the motorized scooters in grocery stores or department stores. You get irritated, right? “Get off of that,” you think, “you obviously don’t need it.”.

I should be using those. I’m too afraid to use them and end up on the receiving end of that disapproval. I avoid using my cane in public unless I absolutely need it or I know I’m going somewhere “safe” because of one person who felt entitled to tell me off over it.

Thankfully, there are more and more resources and support groups popping up every day for those who live with invisible illnesses and the conversation is beginning to turn in a very positive way. Talking about these things isn’t so taboo anymore and compassion and acceptance are becoming, slowly, the normal response. I’m more often greeted with a “really? Me too!” than I ever thought I would be when I talk about some of my struggles and illnesses and every time a new lemon or spoonie comes forward, I feel a surge of kinship, that “me too” hitting soul deep and allowing me to forge bonds with people that make me stronger.

If you struggle with an invisible illness, be loud. Use your voice and your story to bring visibility to these hidden menaces in our lives. You never know who could be watching or listening.

If you don’t struggle with an invisible illness, be kind. Show compassion and strive to understand and listen and never offer judgement or derision. You never know who could be watching or listening.

Our illnesses might be invisible, but we’re still people.

The Laws of Motion

Newton’s Laws of Motion state that an object will remain in whatever state of motion or stillness until outside forces are exerted upon it. An object in motion stays in motion, an object at rest will remain at rest.

Depression, I’ve found, can be summed up similarly.

If I keep moving forward, I’ll keep going. I’ll be productive, I’ll still make progress, I’ll do the things I set out to do.

If I stop for any reason, however, I become immobile, unable to step forward. Frozen in stillness by doubt, anger, and hate all aimed, with lethal precision, inwardly and at those closest to me. In my stillness, I become bitter, jealous, spiteful. My words no longer intend to soothe, they aim to cut and sting and bruise. If left alone, the fire dissipates, leaving an icy wasteland of apathy for me to exist in. The most basic of functions become too much effort, any physical movement rendering me spent.

Currently, I find myself growing stagnant as I wait for something to pitch me forward again into progression and movement. I’m anxiously checking the mail every day, knowing that any delivery could bring the papers I need to enroll in and subsequently start school. The end of the week brings Easter, which my church is celebrating with ten different services across four different venues. Plenty of activity there. My mother has generously offered up her Sundays to help ensure I get at least one day out of the apartment. Once I have school underway, I can make outings to coffee shops, campus, and other locations to help me stay focused and motivated.

For now, though, I’m collecting dust on the couch.