I Have Succumbed to Madness

This week was the start of my being off my meds in preparation for the testing to come next week. This week also happened to hold our very first gathering for Dungeons and Dragons. 

Everyone had a spectacular time, but perhaps no one enjoyed it as much as I did. 

See, going off of 40mg daily of Paxil cold turkey has an interesting impact on people. For me, it means wildly moving between fantastically, over the moon happiness, crippling anxiety that leaves me breathless, intense and uncontainable fury, and crying for any, all, and no reason whatsoever. Combined with intense pain that cannot be addressed by anything strong enough to do any good?

I will consider myself incredibly lucky if I am not killed by Nikki or Pam before this is over.

In four days, we’ll also add sleep deprivation and unfettered nerve pain to the mix as I drop my remaining medications until after testing concludes on the 11th. 

So I will say again, if you hear very little from me over these next few days, I’m okay. I’m just losing my mind, that’s all.

The Slow Descent 

Cleveland Clinic Round Two is fast approaching and already, I’m having to slowly work off of my medications. This means my pain, my sleep, my appetite, my depression, my moods, everything will decline as I drop each medication. The night before requires fasting and no caffeine, which will have my autonomic symptoms flaring in no time. All this in the name of tests that I probably won’t even know the results of until I go back again in September.

I’m doing everything I can to counter the impact this is having and going to have on me emotionally by making plans, staying as positive as possible, and reaching out into my support network for those who are always willing to help me. 

In the meantime, self care is going to become a sole focus. Making sure I’m giving myself my best chance is key to making it through the next couple weeks with sanity, relationships, and body intact. Blogging may become a little irregular, as it has been for the past week. I hope, however, to use it as a means of keeping myself grounded.

Peace and love to you all. I’ll have good news to share with you very soon.

Kato

I apologize for not blogging the last couple of days. I needed to get myself mentally and physically prepared for a big opportunity I would be interviewing for. I can’t tell you about it yet, but I promise I will as soon as I can.

The moment arrives, the big interview begins as my cell phone rings. I answer politely, letting my comfortable spot on the couch coax my anxiety away from my voice.

Then Kato woke up.

He’s taken to sleeping on Pam’s bed, since she leaves her bedroom door open for the cats to have more space. We don’t have an issue with him doing this, obviously, but it comes with a particular issue. Every now and then, he’ll wake up not knowing if he is alone or not. He doesn’t like to be alone, so this search for companionship usually occurs with a meow or two.

Did I say meow? I meant banshee impersonation. Or demonic karaoke. Whatever it is, it is not a dainty sound, nor is it quiet or discreet.

I felt the color drain from my face as I flung my seated body sideways and into the hallway. He cuts off mid-scream and prances toward me as I carry on the interview, assuring the women on the other end of the phone line that the crash they just heard was nothing important and them calling earlier than expected truly was fine.

Then I watch him stray to the closet where we keep his food.

I knew what was coming next, but I was powerless to stop him as he got up, tapped the hanging toy from the doorknob as my wife helpfully trained him to do to ask for food, and unleashes another long, pitiful wail. This time, I hear a pregnant pause and feel the silent questions slinking through the phone line, but pretend I don’t notice and calmly answer their question.

This continues for another five minutes or so. Kato follows me around doing his best impression of a screaming human baby while I calmly get a sheet of paper and pen, write down a quick note pit stop in our snack cupboard, and walk out of my apartment.

Outside, I verbally affirm what’s being said to me as positively as I can while I beeline towards the landscaping professionals that have been sweeping, bull-dozing, yelling, leaf-blowing, mowing for at least an hour outside our building. I try to portray myself as non-threatening as possible as I hand them a note and a couple of cookies.

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Dear amazing landscapers,

My cat is conducting some kind of Occult Summoning of Demons Opera while I’m doing this phone interview. You get an Oreo each if you take a five minute break. ~I’m not crazy.”

Totally, not-at-all weird, right?

They gratefully laughed, gave me a thumbs up for good luck, and walked away from their machinery until I got off the phone, thanked them profusely, and went back inside, where Kato slept peacefully on the dining room chair closest to the door.

He’s lucky he’s cute.

Adulting

We joke a lot with each other that we aren’t ready to be adults. Despite that, we seem to do a pretty good job of it. 

Coming out of the bedroom today, Nikki and Pam were in deep conversation over budget things, figuring out the best way to time out what bills get paid when and by which person. I settled in across the table with my breakfast and typed out a letter that needed to be sent to my enrollment Counselor for school and booked the hotel for the upcoming Cleveland Clinic trip.

Then we all set off to various appointments and I, for the first time since second grade, made an eye appointment. I can tell my vision has been changing and I’ve been putting off an appointment for quite some time. 

Hopefully, the rest of the day will be more fun and less work, but these days come with a sense of pride. Knowing we can get up and tackle a day full of tasks helps us feel accomplished. It’s easy to forget that doing these kinds of things is a form of self care. Make and go to the appointments, take care of the administrative tasks for school or our finances. It feels like work, but it’s a very basic form of making sure we’re taking care of ourselves. When framed like that, it feels a little less daunting and a little more like support, giving ourselves our best chance.

“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.

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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. 😉

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.