Sacrifice – The Balancing Act

One thing that I think a lot of people without health issues struggle to understand is the constant struggle with energy usage. For those of us who do, we are constantly having to figure out how much energy we can allot for each daily task, life event, or personal relationship, as well as whether that particular thing is worth the sacrifice. I call it a “sacrifice” because whenever we choose to do something, we are having to give up something else. Everyone has to deal with this in life to some degree, but for us spoonies it’s a lot more complicated. A perfectly healthy person, for example, may have to choose whether to spend their time and energy becoming a lawyer or an attorney. They may need to figure out how they can balance work and children, or whether they can handle a relationship on top of school. But for us, we have to make decisions about every thing in the otherwise mundane world. Can I take a shower today? How many errands can I run (if any)? And for us, larger life events take up even more of our energy and divert it away from other things in our lives. That brings me to my latest news – my husband and I have adopted a kitten!

Even for perfectly healthy, energetic people, this would be an exhausting life event. Kittens have boundless energy (and love), and our little Lyra is no exception. Add onto that a chronically anxious 10 year old cat (who has feline idiopathic cystitis from it) who is used to being an only fur-child, and you’ve got a stressful situation that calls for a lot of energy. Even my husband, who is healthy other than treated psoriatic arthritis, is exhausted. Worrying about our older kitty has taken a lot out of both of us – even he slept 2 hours the other night because of his own anxiety about him. This last week has taken a lot out of me – he’s at work all day, while I’m home with the (fur) kids. I have to play with, feed, and discipline a very active kitten while pacifying a big ole scaredy-cat, all while trying to manage my POTS, try to get my jewelry business up, and work on taking over part of my Dad’s business as he retires. That’s a lot for anybody.

It’s important to be able to see what things in life are worth sacrificing your spoons for, and how long you can do that for. I’ve been preparing for getting a kitten since Rhys was a kitten 10 years ago – continuing to learn, simplifying my life, and testing/learning my limits. I know I can do this, but it is a sacrifice. I don’t have the time or energy now to do some of the things I love (mainly wire wrapping…which is double stressful because I want my Etsy to do well!).

If we all live our lives by letting our health conditions dictate what we can and cannot do without reasonably challenging those day-to-day restrictions, life would be pretty damn boring and sad. Sometimes you have to take a calculated risk and do something fun, make an investment for your future, and live a little. The short-term effects can be tough to get through, but the long-term benefits are worth it. (Rhys is proof of that – a couple rough months of him being a kitten brought about the last 10 years of immense love, comfort, and fun, and here’s to another 10 years with him and now Lyra!)

Our one-eyed beauty Lyra (she had an eye infection when she came to the shelter and it had to be removed)

Rhys & Lyra hanging out. He’s anxious but really loves being around her already

My handsome 10 year old baby Rhys

Growth

Let’s talk about an important subject that I think all POTSies struggle with. We as humans tend to measure our worth by a few standards – accomplishments, ability/skill, and growth. For those of us struggling with POTS (or any chronic illness!) this can be really tough. Many of us can’t measure ourselves with the regular metrics, at least not in the same way. While a perfectly healthy person can take pride in working a 40+ hour a week job, striving toward higher education, amassing awards or certificates either in their career or a hobby, or by watching the numbers in a bank account climb…Well, that isn’t always so simple for someone struggling. That’s not to say we can’t use these measurements – it just becomes that much more important to focus on the steps we can and have taken, as well as to factor in our selfcare. It may take us longer to reach those goals or we may have to take a different route. It’s easy to get caught up in the stats of it all – or perhaps, the status of it all – and get down on yourself. But I can’t stress how important it is to stop, take a breath, and look at how far you’ve come. Whether you’ve climbed Mount Everest or made it to the grocery store, take time to be proud of what you’ve accomplished. Take into account what your body allows and where you started from.

It’s in that spirit today that I’m going to look back at my last two months of wire-wrapping. I wrote in my last post that I began to make pendants using copper wire, and I’ve been continuing that wonderful journey. I’m not the best out there, but that doesn’t matter – what matters is that I’ve improved and that I’m enjoying my newfound passion. I’ve even opened an Etsy shop! Check me out: etsy.com/shop/TheVirtuousElf

My 2nd piece vs a later piece – same stone

I’ve really been enjoying seeing others’ work and learning from them. So far my brain hasn’t wanted me to sit still and pay attention long enough to follow a “how-to” video, but even just analyzing pictures has helped me tremendously. At first I was using a lot of wire just to have them be unstable. Now I’m able to create really sturdy pieces with far less base wire – the rest is for embellishments.

Now I’m making better-quality stuff! And today I reached 700 followers on Instagram

I’m hoping the shop I’ve opened can eventually support itself – I’d love to be able to make enough to buy some really nice stones and wire and create beautiful pieces I can share with others. But for now, I’m just thrilled to sit back and enjoy doing something that I’m steadily improving at – even with POTS!

The Power Behind Passion

With POTS in 2020, it’s sometimes hard to know whether you feel depressed because of everything going on or it’s actual depression. I think for me it’s been a bit of both. Sure, I’m happy enough (honestly ecstatic) in my little bubble with my amazing husband and our furry cat-son, but let’s be honest: 2020 was THE Worst. Year. Ever. I’ve hardly seen my parents since last March, and the few meetings we’ve had have been brief, socially-distanced visits with masks on. Nothing overnight, no hugging (apart from quick hugs hello and goodbye, literally holding our breaths), and no sense of normalcy. It’s been like a bad nightmare. Before all this, I saw my parents at least every 2 weeks, often for weekend-long visits. This past year it’s been more like once every few months for just a couple of hours. I’m an only child, and I’ve always been incredibly close with them, and since I’ve been sicker/diagnosed we’ve only been closer. Not seeing them has been so hard, but also so necessary. With my husband working in a state mental hospital (where he’s literally had patients not only refuse to wear masks but also try to eat them) and my father and his mild coronary artery disease (and medicated high blood pressure, cholesterol, etc.) plus his age, we’ve had to be very cautious. Heck, I got POTS after several bad bouts of strep when I was around 10 years old – the same symptoms and type of cause that creates the “Long Covid” issues people are experiencing. I swear, it’s all POTS.

Now we get to the fun part. Just under 2 weeks ago I started making wire-wrapped jewelry. I’ve been enamored with the concept for ages, but I finally decided to give it a try. Now, I have NO idea what I’m doing to start out – I’ve just been diving right in, and I’m having a BLAST. It’s strange, but I’ve had an absolute fascination and adoration for rocks since I was a kid. I used to sit outside for hours and pick up each stone on the front hill outside my parents’ house, looking for crystals. It took me a few years, but eventually I picked up just about every single stone on that entire hill – eventually it was all just dirt, when previously you couldn’t take a step without feeling 5+ stones under your feet. At recess instead of playing with the other kids I’d walk around looking for rocks, and I’d hide the best ones to come back after school to keep. There’s something about the ancient quality of those things and the individuality of each one that has always drawn me in. I laugh to think it may be because if there’s anything close to magic in this world, it’s nature’s ancient creations that would hold it. Or perhaps it’s knowing that these colorful pieces of earth will be here even after I’m gone that draws me in. Whatever the case, I’m excited to be putting my love for stones together with my love for jewelry to create some fun stuff. I don’t pretend to be a rock savant or a jewelry whiz, but I am having a lot of fun creating these little pieces. I find myself excited when I wake up and content when I go to sleep. My husband always makes me feel that way, but I’ve been lacking an intrinsic source of that passion and happiness for a while, and I’m thrilled to have found it.

Check me out on Instagram or Twitter – every single like or follow I get makes me giddy. It’s ridiculous, but make my day 🙂

https://www.instagram.com/virtuouself/

Twitter.com/VirtuousElf

Same Resolution, New Year

It’s been two years since my last post – a post promising to try to write more frequently, and to share my POTS experiences. Well, we can all see how that turned out.

I ended up doing something that I’ve done more and more since getting “sick”: I put pressure on myself to do something, sat around thinking and feeling guilty about it multiple times for an extended period of time, and effectually psyched myself out. Oops. One thing I’m trying to do is to learn to forgive myself for that. To forgive myself for experiencing anxiety (seriously?) about the little things, and to forgive myself for letting that anxiety control me and keep me from doing what I want or love to do. That’s actually been one of the most difficult parts of the healing journey. I used to hold myself to an impossible standard – and usually meet my expectations. However, this was at a huge cost…the cost of my health. I think that pushing myself so hard for so long eventually led to my POTS getting the better of me. It was like my body finally had enough of my bullsh*t. “No more. You’re done. I’m done. Rest.”

So I’ll start off this year with a summary of what’s gone on since my last post. I’ll keep it short for now, and I’ll likely elaborate on things later. Let’s hope this time I keep my goals! But hey, better late than never.

In May 2019 I married the love of my life. I wrote about him before and how he helps me tremendously. Life has been absolutely wonderful with him. We had a fairytale wedding at a botanical garden that I used to visit with my mother and her parents when I was a child. It was tiny – just 10 of us in attendance – with only the people closest to us. I really couldn’t imagine a more perfect or more fitting celebration for us. Hopefully I’ll write a much longer post about that soon!

Around that time I started really getting into web design using Wix. For a while I enjoyed it – I was finding new clients, working on interesting projects, and making some extra money. But eventually it became too stressful. I had some nightmare clients – one of which (when I told her I couldn’t do extra work for her) even went so far as to tell me that I suffer from POTS because I’m a “liar” and a “bad person”…though I’d worked with her for months longer than any other client, charged significantly less than the average (roughly 1/10th of researched average), and made many exceptions for her (working with a client with a 12 hour time difference, speaking via Skype instead of just email), and providing literally hundreds of edits to what we’d agreed on. Ironic, considering she was a yoga/mindfulness instructor who allegedly wanted to help people with depression and other issues… But I digress.

All of 2020…Need I say more? This year has been horribly stressful for everyone, and I’m no exception. It was also one heck of a year to turn 30. My husband works at a state mental hospital, so he’s been dealing with people that are less than likely to comply with wearing their masks or keeping up with good hygiene. He’s been an amazing trooper through it all, and I’m immensely proud of him. He finally got his first vaccination just last week, so that’s a relief! As for me, I’ve moved away from the web design and am currently on a working hiatus. I want to figure out my next step in life, and luckily my hubby is really supportive about it. Right now I’m leaning toward jewelry design, so I’ll be trying that out soon (I hope!)

I’ll be working on gently coaxing myself to return to this journal both to document my experiences with POTS and to spread awareness. I’ve been stuck in a rut for a while (and this past year hasn’t helped with that of courses!), and I’d love to be able to write more. My original life dream – other than finding and marrying my soulmate – was to become an author and publish a novel. Hopefully writing more here can reawaken my love for writing…or at least give me more of an outlet and a way to keep my mind sharp and out of the fog!

New Year’s Resolutions (POTS-style)

I suppose my first resolution for the new year should be to write in this blog more often — though I never meant for it to be a daily activity, I intended to write at least one entry each week, and for 2019 I’m going to try harder to stick to that.

My next resolution is to work on a terrible, anxiety-induced habit I have (that drives my fiance nuts): picking at my fingers. Apparently it’s a form of dermatillomania/excoriation disorder, which makes sense given my history with OCD as a child. It’s become so subconscious that sometimes I don’t even notice I’m doing it until the damage is done. This year I want to put a stop to it, so wish me luck!

My illness has made starting a career extra difficult (as if it wasn’t hard enough already), and this year I really want to see my marketing business grow…and/or actually put my real estate license to work…and/or find something else that works for my life. With the daily fatigue, brain fog, and the nausea/dizziness/lightheadedness that comes from any exertion, working a normal 9-5 is impossible, so I’ve got to work harder and be more creative. I absolutely hate relying on my parents and fiance for things, so this year I hope to become more financially independent.

This one is the same one that I have had every years since receiving my diagnosis of POTS in 2011: to be kinder to myself and forgive myself more for things that are out of my control. It’s been a battle (as it is for many of us with chronic illnesses) for me to accept my limitations and not blame myself for them. Every year I work to get better about this, and this year is no exception.

Finally, I’d like to get in better shape — for my health and for my wedding in May! I’d like to lose 5-10 vanity pounds and firm up my arms for the wedding, and I’d also like to get back into a better exercise routine to increase my stamina. POTS makes exercise tougher, but it also makes it more important, as our bodies can easily become deconditioned.

 

This year is going to be a huge year for me. I’ll be getting married to the man of my dreams and going on our honeymoon, and my parents are headed toward retirement. Changes bring a lot of stress and anxiety, but these changes are so positive that hopefully I’ll be able to handle and enjoy them to the fullest. I hope everyone that reads this is able to come up with some realistic, healthy resolutions and follow through with them. Wish me luck as I try to do the same!

The Difference One Person Makes

I’ve been incredibly fortunate to have two very loving and supportive parents. I know they always have my best interest at heart and that they have my back no matter what. I’m even fortunate enough to count them both among my best friends; we’re incredibly close and talk about just about everything. You can read more about how mom specifically helped me get diagnosed in my article on The Mighty. But even with all of that, I was once so scared of ending up alone because of my chronic illness. I was worried that I’d never start my own family or even find someone that was willing and able to shoulder the burden of loving someone with permanent health issues.

That’s where Jared came along. I’d had this online friend since I was 12 years old that had sort of come in and out of my life since we were introduced in a chatroom on AOL. I remember having a big crush on him in middle school; I printed out a picture of him and brought it to first period English to show my friends how “cute” and “hot” he was. We’d talk periodically through the years, and when we did it would last ages. I distinctly remember talking to him on Facebook for over four hours until 1am one night when I was in college. I had recently been diagnosed and was having some emotional trouble with talking about it to others (after so many years of “pretending” I wasn’t sick). He was one of the first people I really opened up to, and I was relieved and empowered by his polite, respectful, and honestly receptive attitude. I gave him my phone number (finally!) and then didn’t hear from him again for a while. Every time we’d talk he’d tell me what a huge crush he had on me, but I never took him seriously — after all, he’d kind of vanish for periods of a time from my life. But at the ages of 26 and 28, we got to really talking about finally meeting in-person. We had the money and time, so why not? We’d always been interested in one another, and we got along fabulously. He even understood my POTS, and he eagerly learned about it and how it affects my life. He came to visit me at my parents’ house for a week, and we really hit things off.

Fast forward two and a half years later, and we are happily living together and engaged! Our relationship has quickly become one of the most treasured things in my life. It’s truly amazing how one person can change your life. He’s so supportive, helpful, and patient with me that it makes me wonder how I ever existed without him. He helps me with the day-to-day tasks that sometimes overwhelm me; if I’m having an off day he’ll wash extra dishes, do laundry, clean the litterbox, etc…all after a long day at his psychology internship. Unlike me, he has energy to spare. He comforts me when I’m having a particularly difficult/stressful day and helps me pick myself up when I’m feeling down about my health. I can honestly say I’ve never met a more selfless, giving, and pure good person.  He says he’s got a “hero complex”, and the way that often manifests itself is by him doing so much good, both out in the world and here at home. I admire and appreciate him more than I can put into words. He’s my support system – my best friend, romantic partner, and true love.

Being with your soulmate won’t cure POTS (or any medical condition), but it sure helps. With his help, I am able to do so much more. I’m able to accomplish more and rest better because of him. My life is fuller, brighter, and more fun with him in it. Obviously the road goes both ways and I put my all into our relationship and to being/giving him everything he deserves, but that’s not the focus of this post. I hope anyone reading this, anyone lonely or lost, anyone who has lost or is losing hope of finding someone to share the journey of life with, hears me now: Even when life is bleak, remember that it’s just a dark cloud. The sky above you is still bright — there are still amazing things and people out there that can make life that much better. Two and a half years ago I was scared of being alone forever, just coping on a day-to-day basis. Just living. Now I’m still dealing with POTS, but I’m so much happier and my life is so much fuller. I’m not saying the “fix-all” for everyone is a good relationship, but it sure helps. Before Jared, I hadn’t dated in 6 years. I could blame that on the fact that I rarely got out or my illness, but in reality I had been with people that weren’t a good match for me and I didn’t want to waste my precious energy on unhealthy relationships anymore. I’d decided that I’d rather be alone that in a less-than-stellar relationship. I got used to being alone, even okay with it. I’d accepted that as a possible fate. I learned to be happy and I found other things to focus on that brought me joy. But nothing has healed my soul quite like having a partner that helps me carry this burden — physically, mentally, and emotionally — while thriving in the adventure of life together. He has truly changed my life for the better, and I can’t wait for every day with him. Thanks, honey, for being my rock and my hero.

My POTS Sense is Tingling

Perhaps one of the most annoying things I deal with as a POTSie is periodic random sensitivity to sound and/or light. Changes in light can be quite jarring, and artificial light often gives me a sort of floaty feeling–like I’m in a dream. It makes it super hard to focus, and that makes ordinary tasks like shopping much more difficult; when you can’t focus under florescent lights it makes finding a cute top or tonight’s dinner pretty frustrating. Waking up is difficult for the same reason; the change in light makes me feel drained. I also have a very difficult time falling and staying asleep if there is any light in the room. I’m immensely bothered by eye masks, so those don’t work (I can’t sleep if anything is covering my face).

Sound sensitivity–the reason for writing this particular post–is another extreme annoyance for people like me. Sometimes my ears have trouble picking up and decoding sounds…and other times they decide to act like giant receivers and pick up every single sound. Errant bass is often the worst. When a neighbor is playing particularly loud or rhythmic music that passes through the walls, it drives me absolutely batty. I can feel the bass, which tends to mingle with my already racing and/or overly obvious heartbeat. (The medical community refers to this as “cardiac” awareness–when one’s heartbeat is so strong that you can feel it throughout your whole body. It can be quite distracting!) On a Friday evening one would expect people in the college town I’m currently living in to be listening to music loudly (and let’s be honest, it’s 8pm and probably not loud enough to bother most people too much). It’s just a part of life, another inconvenience I have to deal with. At times like this I can’t help but think back to my mother always referring to me as “the princess and the pea”…and why I now not-so-fondly refer to POTS as the princess-and-the-pea syndrome. It’s easy to be seen as a complainer to others with this sort of thing; many people would probably write this off as being too finicky or letting the small things get to me. But as I sit here with my own music blaring (to try to at least drown out some of the loud base that I can feel from a song I don’t know and did not choose), pausing repeatedly to gather my thoughts and try to keep them from going to the void, I believe it’s important for people to be aware that sometimes errant noises can be troublesome for people. Those with heart conditions, sleep issues, chronic migraines, dysautonomia, and many other issues are affected by your “harmless” loud music. Maybe one day we will live in a world where all apartments/townhouses are totally sound-proof or all of these conditions are cured. Until then, let’s all be courteous and remember that while something may not bother you, it may be tough on those near you. And for those of us suffering from those things, let’s be patient with those who are lucky enough not to understand. Everyone deserves a little patience and love.~

The Importance of Sleep

I think it’s safe to say that just about everyone has experienced what it’s like to suffer through a low-sleep day. It feels like your body is a little heavier (especially your eyelids), your cognitive processing power is a bit slower than usual, and you may be in a less-than-enthusiastic mood. For most people, that’s about it–it’s a minor inconvenience that makes the day a little annoying to get through. But when you have a chronic health condition like POTS/dysautonomia, it can be much worse than all that. In addition to all those minor issues, lack of sleep exacerbates all the symptoms we normally experience. And if you’re like me and have sleep issues on a fairly regular basis, these issues can increase over time; as one of my Management professors in college told us many times, sleep debt accumulates. That is, the more often you sleep poorly, the worse you are going to feel overall.

For me, falling asleep has always been difficult. This goes way back to when I was a little kid, before I have any memory of anything resembling POTS symptoms. I can remember my grandfather (who was visiting and in charge of putting me to bed for the night) remarking in exasperation that it was like I never learned how to fall asleep. Unfortunately, what was true for me at age 4 is still true at age 28. Sometimes it takes me hours to fall asleep. I lie there in bed, eyes closed, trying my best to turn off my brain for the night. Of course that’s when my brain decides it’s time to do a run-through of my entire day, week, month, year…anything it can hold onto to prevent me from falling asleep. When I’ve finally managed to drift off, the next trail awaits: staying asleep. For most of the night I’m a very light sleeper; most sounds, smells, or fluctuations in light will wake me up. I also tend to wake up at the end of my dream cycles and/or to turn over. Once I’m awake, sometimes I’m lucky enough to fall right back to sleep, but a lot of the time I return right to step one. There have been times when I’m awoken by my fiance’s work alarm, only to finally fall back asleep 2-3 hours later. It’s a daily struggle!

In my case, I’m hit with a double-whammy. Not only do I have sleep issues because of my condition, but my mother’s side of the family has had horrible issues with sleep for decades. My grandfather (yes, the same one mentioned earlier) would often sleep for large portions of the day in the basement because he was up for enough of the night. For over a decade my mother somehow managed to survive on roughly 3-5 hours of sleep most nights. For her, sleep issues didn’t start until perimenopause hit, but she suffered until I suggested she try what worked for her brothers–an SSRI, sertraline. That’s the only thing that has helped anyone from my mom’s side of the family; they’ve all tried various medicinal, herbal, lifestyle, and natural remedies for years. Though sertraline helps a little for me, it falls short of fixing the problem.

So what do I experience on a low-sleep day? I feel like I’m floating through life. My brain flits from idea to idea, racing through various lists, memories, and tasks without holding onto any of them. I imagine that it’s something like what those who suffer from ADHD must go through. (But, sadly, while I’m on methylphenidate/concerta to give me energy for POTS, it doesn’t help with any of those symptoms.) I have a hard time holding onto any one thought or making decisions. My motor functions are also impaired; I have more trouble moving about, more likely to stagger and using a lot more energy to complete basic tasks. I tend to get headaches, sometimes for an entire day. My anxiety can also increase, partly enhanced by the fact that I’m afraid of being a burden on those around me. I always feel guilty for leaning on my parents or my fiance, but when I have an extra difficult day, that guilt is intensified. The lethargy I experience makes me feel useless. If I have enough brain power left to feel this way, I can get really down on myself. On the flip side, if I’m too tired to have any real emotions I’m spared from this and I can just space out and enjoy my “day off” from guilt.

Sleep hygiene is super important–I try to establish a routine and give myself plenty of time to sleep (I’m often in bed for 11-12 hours per day, just to get enough sleep/rest to function). I won’t lie…it’s horribly annoying. Focusing so much of my life on just getting enough sleep to function at a basic level around the house can be a real drag. But I try to give myself little things to look forward to that keep me upbeat (video games while I wake up slowly) and reasonable goals that I can accomplish (I’ll make a post about those later). Sometimes all I can accomplish is sitting down, listening to the rain, and writing a blog about it–and that’s okay. Sometimes when life gives you lemons and you’re too tired to make lemonade, you just hold onto those lemons and look forward to when you’ll be able to make lemonade!

It Was Love at First Sight [with my cat]

I’ve been going through a list of topics in the back of my mind, trying to figure out which one to tackle next, but as my cat settled into my lap for a nap (thus trapping me on the floor and preventing any productivity) I knew today was the day to write about my furry little miracle.

I’d wanted a pet (dog or cat specifically) since I learned how to walk. My mom tells me stories of how I would crawl into the bed of my aunt’s two giant golden retrievers, and my love for animals has always stayed with me. But much to my absolute anguish, my parents didn’t want one. When in the fall of 2011 my then-undiagnosed POTS got much worse, however, my mom decided it was time. I was so very sick; I had to take a medical leave of absence from college and could barely get off the couch. One of the few things I managed to do was to visit the local animal shelter with Dad to spend some time with the cats as a sort of self-therapy. Something about meandering among the giant cages of kittens and sitting in the adult cat room and just bonding with those furry creatures brought me relief and joy.

On one such trip, something different happened. While I was usually perfectly content to pet the cats through their cages and split my time among them all, one kitten in particular caught my eye. This tiny sleeping gray tabby just tugged at my heartstrings. I loved his white “eyeliner” marks on his eyes and he had the most innocent and pure face I’d ever seen on a cat. We’d been visiting this shelter for a couple of years, stopping by with donations of food and/or money, and I’d seen plenty of adorable cats. But something was different about this little guy. For the first time, I asked the staff if I could hold him. He woke up and we locked eyes. He studied me for a moment and there was a quiet intelligence behind them. I walked around for a few moments just holding him, watching him and his reactions to the room around him. While other cats that were being held were preoccupied by their surroundings or trying to escape, this little one’s eyes were focused on me. I settled into a chair, mesmerized by this little ball of fur. Eventually he nuzzled into the bend of my arm and started to knead and suckle as he slowly fell back asleep. I was shocked. I assumed this must just be something he does, but in the back of my mind I secretly hoped that I was somehow already special to him. I left that day with an extra warmth in my heart.

A day or two later we went back. This time, the kitten was awake. One of the volunteers saw me gazing at him and offered to get him out for me to hold. I immediately accepted as Dad wandered off to look at the other cats. Again, he watched me closely. After a few moments he began to knead and suckle vigorously on my arm, purring loudly. The volunteers all took notice and commented on how shocking that was; one even went so far as to take a photo and send it to my mom (trying to make the adoption that I knew was unlikely to happen). I took him over to my dad and told him with tears in my eyes that I was in love. While I was telling him about how sweet this kitten was and how I had already bonded with him, he woke up and started struggling. I was confused and tried to hold him back as he tried to climb onto my shoulders. I glanced behind me to see what it was that he wanted–and I couldn’t help but smile when I saw he was trying to get at one of the carriers that was on top of the crate behind me. He was trying to get into a carrier. Maybe he wanted to come home with me! I stepped away from the carrier and he stopped fidgeting, settling back again into my arms. My heart burned when we left that day.

That night I begged mom to meet him. I felt what I had never before experienced in my life, something I had never believed in until that moment: love at first sight. She refused, saying she didn’t need to; there was no point. Nothing would come of it. I was heartbroken. I remember lying on the couch, the last of my precious energy wrapped up in my pain…and my chagrin. It was ridiculous, but I had already formed such a close bond with him. I could feel that he felt the same way. But he was adorable, and cute kittens always went fast. He’d be there another week at most. I marinaded in my sadness, prepared to spend the evening that way. That’s when mom came in from the other room.

I’ll never forget what she said next, and she’ll never let me live down what I replied with. “I talked to your father and we decided…You can get the cat.” I stared at her, eyes wide with surprise. Surely I must have heard her wrong. She had made it very clear that there would never be an animal in her house. “Am I dying?” I managed after a few moments of confusion. That was the best reasoning I could come up with for her sudden change of heart. As she explained, she couldn’t bear to see me as shattered as I was mentally and physically because of my then-undiagnosed medical condition. We didn’t know how long it would be until I could get a diagnosis or go back to school, and she thought this would help me cope. She was right.

Dad and I rushed back to the shelter to drop off the adoption application, and the next day they told me to pick him up that evening. During the night in between those events I hardly slept–what if I’m wrong? What if mom can’t stand him? What if I’m a bad owner? I wanted this to work out so desperately, and although my mind threw all the logic it could at me, my heart still held firm. This would work. He and I were somehow meant to be. It’s weird, I know. But I was right.

On October 13th, 2011, I adopted my best friend. He eagerly climbed into the box that we took him home in, and he stared at me the entire car ride home. After fifteen minutes of exploring our house, he put his tiny paws on my knees, craned his neck upward, and gave me a gentle nuzzle on the nose–and with that kiss I knew everything would be fine. From that night onward he slept in my bed, kneading and suckling on my neck until I held him and calmed him down. He followed me everywhere like my shadow. He immediately learned his new name (I named him Rhys after a character from the Dragonlance book series, choosing to pronounce it “rice”). The best part was that for some reason I have been the only one chosen by him; he loves his grammy, grampy, and how his new daddy, but I have always been Mom.

There are few times in life where everything not only meets your wild expectations, but actually exceeds them. Next month I will have had my furry son for 7 years, and very little has changed. He’s ecstatic to see me every morning when I wake up (now he sleeps elsewhere, most likely because he doesn’t like the fans I’ve discovered I need to keep from overheating while I sleep), and he cuddles on my lap and/or chest until he falls asleep each day. He follows me through the house and we have the cutest conversations (he meows in response when I ask a question and listens intently when I speak), and I can honestly say I love him more like a son than a pet.

For now, this is just an introduction to Rhys. I’m sure I’ll write a lot more about those next 7 years and the many more to come after that.

The World Wasn’t Made For Us

Today’s blog topic practically hit me in the face today. I already knew it was going to be a rough day before I woke up; I was out of methylphenidate (which I take to give me energy) and my new written script wouldn’t come in the mail until after I was supposed to take it. That meant I was going to have to drive myself sans methylphenidate to the pharmacy to drop off and fill it. This may seem like a minor inconvenience to most people, but for me this was a much more difficult task. Mornings are incredibly difficult for me. Now when I say “mornings” I don’t mean the usual early morning post-sunrise part of the day that most people experience. “Mornings” for me start around 11 or 12 when I wake up and last until 2 or 3. This is because I am often in bed for 10-12 hours a day just to get the minimal amount of sleep to function, and then I take another 30-60 minutes just trying to wake myself up slowly enough that I don’t feel like passing out after getting out of bed. So getting my prescription filled meant going before I was fully functional. Let me tell you, driving when you feel like you are half awake is bad enough, but when it’s somewhere around 90 degrees and your body doesn’t handle warmer temperatures….well that’s just hell.

It’s when I get to my local pharmacy that I really start to feel it…to feel that this world society has created for us doesn’t really work for those of us with health issues. I stand in line, trying not to teeter back and forth, aware that my face is becoming flushed and I’m already sweating (in the air conditioned store, where elderly people are standing without any apparent issues). When I’ve dropped off my script and I’m told to wait the 15 minutes I make a b-line for a chair and grab one as fast as I can–not hard to do, considering of the 6 or so chairs, none of them have a person in it. I can feel the looks on me as I do so; in my mind, people wonder if I’m lazy or pregnant, or if I’m just going to be there for a long time. I try to ignore their perfectly rational judgement and wait for my name to be called. When it’s finally my turn, I head over to the pickup line–which is easily twice as long as the drop-off line. The 3 or 4 older folks don’t seem to mind the wait; when they get up to the register they take their time. I try to appear patient, but inside my body is on fire. I feel as though I’m walking on a tight rope with a blaze inside me, all the while trying to focus on the hear and now to keep myself from succumbing to my internal battle. Finally it’s my turn, and I pay the $130 for my one prescription (I have insurance, but GoodRx is actually cheaper!) and head toward my car. The second I’m inside I turn the key, blast the air conditioning, take one of my pills, and try to breathe.

In thinking about it, many of the people who go to pharmacies to pick up prescriptions are likely to have some health issue–whether they are dealing with the regular issues of the elderly, need medication to handle a common issue (high blood pressure, high blood sugar, chronic pain, etc.), or they are there to pick up antibiotics and such for an infection. So why is it that a place that literally exists to help people with health issues asks them all to stand in line and wait like normal, healthy people? Even people suffering from something as simple and generally non-threatening as the common cold are likely to want to sit down and rest. Elderly people, who already have trouble walking or standing up, should have something to sit or lean on. Part of it is because for a lot of us with health issues, we have our healthy family members pick up our medication. The elderly woman in front of me was dropping off medication for her even older and seemingly senile husband (she was a lovely woman who asked me for my opinion on men’s razors). Others in line are picking up something that doesn’t require a life-changing health condition to use, such a birth control. For those of us who do have a health condition, however, we have learned that we do what we must. We must drag ourselves out into the world and stand in line, quietly pretending that we are every bit as healthy as the other people who are quite possibly doing the exact same thing. That’s kind of mind-boggling, when you think about it. And what’s even crazier is that there is a simple fix for it: handing out numbers and having everyone sit while waiting to be called on. This now-antiquated concept would help so many people, but for some reason we are tasked with putting on a show of gathering into a long line and waiting, ignoring whatever symptoms may have brought us to the pharmacist in the first place.

 

The second big instance of what I call “acting normal” came almost immediately afterward. Upon getting home, I checked the tracking number on the bed frame that my fiance had ordered off Amazon. Apparently, it had been delivered–but surely I hadn’t missed the GIANT queen-size bed sitting outside my front door? I quickly went outside to investigate, hoping that perhaps I’d find a FedEx delivery person taking it off the truck. As my eyes scanned the area, my heart fell (and beat much more quickly). Somehow they had delivered it to the wrong end of the row of townhouses. I quickly walk over and see that it’s been put against two doors, most-likely blocking the poor souls of both townhouse A and B in or out of their homes. My fiance is at work until 5, and it’s now 3pm. There is no one that can help me, so I start tugging at the giant package. It must be 150-200lbs…I can barely move it. With much effort I’m able to lay it down, half on the cement and half on the grass. The sky threatens rain, so I start shoving it toward our townhouse–all the way to townhouse I.

There must be some god out there that took pity on me, because in that moment of shoving and crawling in the grass, a neighbor approached me. Not just any neighbor–a young man built like a football player (he was obviously a gym buff, if nothing else) and offered to help. While I generally try to do everything on my own, I leaped at this opportunity. I drew all the strength I had left in my frail body and somehow managed to lift one end and carry that giant package to my townhouse, up the three stairs, and inside. He left immediately afterward, having been on his way elsewhere at the time, and I collapsed into a heap onto the stairs. I could hardly breathe, and I was afraid that my heart would give out, but I made it. I was angry at FedEx and at the chronic illness gods, scared my fiance would come home to find me expired on the stairs, and grateful to Camryn (I think that was his name? If you ever read this: thank you from the bottom of my heart. And sorry if I got your name wrong–I was kind of preoccupied by trying not to die). But I was also incredibly proud of myself. That may have been a small achievement to many, but for me that was a major victory. I acted above normal for once. To see the look of surprise and even admiration on that strong, healthy young man’s face meant the world to me. He undoubtedly saw me as a surprisingly tough girl, for such a thin, weak-looking thing. What he didn’t know is that before he even came to help I was crying inside, wondering how on earth I was going to be able to move that thing another inch, but then I was able to move my own tiny mountain by getting it inside.

 

I guess it’s sort of weird to say, but though I loathe how society exists and works around healthy people, forcing us chronic illness warriors to fight extra battles, I love that sometimes I get to find strength in myself that I couldn’t otherwise have known I had. I get to prove myself wrong and be like a super hero–I’m stronger than I look and more capable than I make myself feel on my more down-on-myself days. That being said, the rest of the day will be spent relaxing and hoping that I don’t feel like death tomorrow for my endeavors. To all my other chronic illness warriors, I salute you in whatever you are able to accomplish today. No matter how much or how little it may seem, you are able to do so much. Don’t hold yourself to the standards of healthy society–they can do what any average person can do. You can do so much more than your limitations. Just by existing, you are fighting a battle others can’t, and you should be proud. Hang in there, and I will too.