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An Open Letter

To my Friends, Family, and Loved Ones,

Hi there. It’s been a while since we’ve talked. Not chatted, we do that a lot, but really talked. How are you? How are you really doing? Tell me all the ups and downs, the hopes and worries, the dreams and aspirations. Fill me in on life. I’m sorry I haven’t been there to experience it all with you.

I’m sorry I couldn’t go to that thing with you, or support you at that event, or go out with you, or even spend time doing nothing together. It breaks my heart every time I have to say ‘no’. And I’m afraid that with every ‘no’ I get closer to being uninvited. They say, ‘absence makes the heart grow fonder’ but they also say, ‘out of sight, out of mind’. I am so frightened of the latter.

I feel like all we ever talk about these days is my health, my illness, and me. Please know that this isn’t because I don’t want to hear about you, or talk about other parts of life, it’s just that right now, this is my life. It’s not all encompassing, at least not every day. But it’s always there. I know that it’s changed our relationship, and made some things more difficult, but I will do everything I can to keep us together.

It’s a weird balancing act, isn’t it? Some days I’m running around with you, finishing projects, going to the movies, and laughing like I used to. Then other days I’m stuck in bed with a pharmacy on my bedside table and so much guilt floating in my mind.

I’m writing you this letter because I want you to know how much you mean to me. You are such an important part of my life; I cannot imagine it without you. Sometimes I forget to say it, but I love you with all my heart. I might not ‘get better soon’ but I am working hard to feel better soon. Thank you for being patient with me. Believe me, I’m just as frustrated as you are.

You are so important, and so are your struggles in life. I want to hear all about it and I want to support you in every way I can. Please never feel like you can’t confide in me because I might have it worse. Everyone’s lot in life is different. I’m just glad that our lives intertwine.

You mean the world to me. When I am sad, stuck in bed, I think of you and all the fun we have and tell myself that this too shall pass. And it will. Because if not, when will we have fun again?

Thank you for being here for me. I know that sometimes you don’t know what to say or do, but just knowing you care is enough.

I love you. I love you so much. The next time I have a good day, you know I will be right there by your side, enjoying it with you. Until then, you’re welcome to join me while I stay horizontal. I have enough blankets for the best fort imaginable. Though excuse me if I leave the construction up to you 😊

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Babe with a Mobility Aid

I’m working on a show this month. A great show. “Good Kids” by Naomi Iizuka. (While a great show, some caution if you wish to read/see it. Trigger warning for sexual assault.) In the show, there’s a character named Deirdre who is in a wheelchair. The show isn’t about her, not at all, though towards the end of the show we do learn her Tragic Backstory of how she ended up in the chair. But that’s not what I’m writing about here.

We’re just working on table reading right now, so we aren’t doing any blocking or staging of the show, but our director brought in the wheelchair today. When I walked in, rehearsal had already been going for about an hour and the actor playing Deirdre was hanging out in the wheelchair. Nothing wrong with this. Seriously, nothing. Yet, I was angry. Why? I have no idea. I don’t know.

I spent some time using wheelchairs this past fall and winter. Not for the reason most people associate with wheelchairs: total paralysis of the legs. I just got tired and would be in a lot of pain in I stood for long periods of time or walked long distances. So, when I went to the British Museum, or spent time at the airport, I was in a wheelchair. Yes, it was a choice. I didn’t have to be in the chair. I could have made the decision to not go to the museum or to just take loads of ibuprofen and deal with the resulting pain from standing so long. But I made the decision to be in a wheelchair so my friend and I could enjoy the museum and not have to completely change our plans because of my illness.

And that choice confused a lot of people.

“You don’t need a wheelchair! Save that for people who actually need it!”

“If you’re so uncomfortable with the attention, just walk.”

“Why do you care so much about what other people think?”

And that’s the ting. No one actually said anything to me when I was in the wheelchair. But they didn’t have to. I’ve never before felt so inconspicuous and conspicuous at the same time. Lots of people looked at me, but no one would make eye contact. They would make sympathetic noises and expressions towards my friend who had to push the chair when my arms got tired, but would stand in the middle of the doorway so I would get stuck behind them, just trying to get through.

Going back to the beginning of this post: the actors playing around in the wheelchair. Why did that bug me so much?

I think it’s because to them, that wheelchair is just a toy, a prop. Something they could fool around in, wheel themselves around the theatre department for fun, not having to worry about making it through doorways or bathrooms, or worrying about having to justify why they’re using the chair at any moment. Because to them, it’s a joke. I don’t think they believe needing a wheelchair is a joke. They’re good people and they care about others. They just don’t have to think about that.

And that’s what I think is bugging me so much. It’s not something everyone has to think about. Until they do.

I’m at a point now where I can walk for longer distances and stand for longer periods of time without feeling as fatigued or being in as much pain. And I’m lucky. I’m lucky to have such an understanding Physical Therapist and a Psychotherapist who helps me work through my frustration and grief.

It’s all fun and games when your friend pushes you down the hallway in a prop wheelchair. Because you don’t have to worry about the judgmental stares. The worries of not being “disabled enough”. Wheeling yourself around even though your arms are burning and you can feel the blisters forming on your hands and you know this will hurt tomorrow but not wanting to bother your friend and be so dependent as needing someone to push you around.

And that’s okay. I don’t want you to. I’m glad this is fun for you. It just isn’t for the rest of us.

Spring Cleaning- Chronic Illness Edition

Ah spring time! The sun comes back, the birds sing again, and the pollen in the air reminds us why we don’t usually go outside in the first place. It’s around this time of year that people begin a major cleaning of their living space. The dreaded Spring Cleaning. I don’t know about you but say that simple phrase and suddenly I’m 10 years old again, vacuuming the back of the refrigerator and sneezing a year’s worth of dust out of my sinuses. Culturally, the idea of spring cleaning is fascinating, with many religions and spiritual beliefs practicing a spring cleaning of sorts. Orthodox Christians heavily clean the altar on Maundy Thursday to prepare for the coming of Christ on Easter, observant Jews clean the house of all chametz (leavened bread) for Passover, and some Iranians still practice khaneh tekani (literally, ‘shaking the house’) in time for the Persian New Year. Whether your Spring Cleaning has religious justification, or if you just think it’s about time someone washed the drapes, this practice can be particularly draining for spoonies. Sometimes just keeping up with the everyday chores of washing dishes, folding laundry, and preparing meals can seem a feat in itself, particularly when you struggle with illness-borne fatigue. So here are some of my tips for a productive spoonie spring, without a trip to the ER.

Write it out

I am a very type A person, and almost nothing makes me happier than new stationary and a perfectly organized planner. So, when I am faced with a task, simple or long-term, one of the first things I do is write it all down in my Handy Dandy Notebook. I tend to look almost exclusively at the big picture when it comes to projects, and then become easily overwhelmed, spiraling into a ball of stress and anxiety when in reality I only had to complete three things. For me, writing things down is both a joy and a necessity. For you, this could mean breaking down every task by room, type of cleaning, and materials needed, or this could be as vague as “clean living areas”. Whatever works best for you.

Toolbox

Before starting any project, and I am absolutely counting cleaning as a project, make sure you have all the tools necessary to be successful. I used to dread cleaning my bathroom as it required a lot of bending, squatting, and kneeling, things that I struggle with on a good day. So, my sinks got a nice wipe down about once a week, my toiled scrubbed every other week, and my bathtub… well, let’s not get into that. Then one day, I was at Target and found a scrubber sponge, get this, on a stick! What a concept! I was so wrapped up in my physical abilities, I didn’t remember that there are tools out there to practically do the job for you! Now my bathtub is just as clean as the rest of my bathroom! (Granted, this is probably not up to a Southern Grandmother’s standards, but I digress.)

Slow and Steady

I have the habit, whether because I’ve put something off until the last minute, or because I am filled with the burst of energy only a new idea can give me, of trying to do everything in one swoop. And I do mean everything. 10-page paper I’ve had months to complete? Who needs sleep anyway! Laundry been piling up for weeks? That’s what industrial sized washing machines are for, right? Cleaning the apartment? Just give me a few hours and an ABBA mix-tape and I’m ready to go! Unfortunately, this is not the best way to approach life (and probably not the best way to approach my research papers…). Overexert yourself today, feel the repercussions for a week, so make sure you’re spacing out your tasks. Make a game plan but go easy on yourself if you can’t complete it all within your ‘set time’.

Mood Music

Sometimes, no matter how pressing the project may be, you just don’t have the motivation. And trust me, I get it. Between the physical burn out of chronic pain, and the mental/emotional burn out of life with chronic illness and a sprinkle of mental illness for flavor, motivation is not a common guest in The Brain of Alex. But there’s just some shit in life that must be done, and only you can do it, muse or no muse. That’s when you treat your brain like a toddler or puppy. Want to listen to that audiobook? Well, you can only do that if you are also washing dishes at the same time. Feel like accidentally mispronouncing every Korean word in a BTS song but enjoying it all the same? Sing and dance your heart out! Just make sure you’re folding the laundry too. This is a trick used by the greats! For example, when my sister has a lot of grading to do (she’s a teacher, aka Super Hero) she turns on one of her favorite tv shows or a movie and grades with that on in the background.

Remember in this time of new life and blooming that just as the seasons change and rotate, so too do we. Sometimes our energy will be overflowing, and we’ll wonder how we ever struggled with X in the first place. Other times the pain or illness will be too much to handle and we’ll feel like we’re trapped in the body of someone who Just Can’t. No one expects a flower to bloom all year long, so why do you expect your body to do the same? Take a breather, drink some tea (my solution for everything) and remember that you are a Warrior, fighting battles others cannot even dream of. So, if spring cleaning takes a back seat, let it. It’ll still be there when you come back to it. And in the meantime, if all that clutter is bothering you, they made bedroom closets for a reason.

Alex here! Thank you all so much for your love and support of this blog! Make sure you’re subscribed to get updates when I post something new, and let me know if there’s something you’d like me to talk about next!

Post-Op Thoughts

Hi everyone! For those of you who don’t know, I underwent a diagnostic laparoscopic surgery on Monday to look for the cause of my pelvic pain.

Since I was 17, I’ve been on continuous birth control to skip my periods due to extreme fatigue, nausea and vomiting, cramping, emotional upheaval, and debilitating pain. My first GYN told me it was all normal PMS stuff and that I would just have to learn to live with it like everyone else, but prescribed me hormonal birth control nonetheless. When I got to college, the pain continued and disrupted my life should I forget to take my pill on time or, heaven forbid, actually menstruate. That’s when I started doing research and talking to different doctors who told me that most likely, my pain was caused by endometriosis (for more on that, check out my earlier blog post, What’s Wrong With You Part 1). So, for two years we’ve been treating the symptoms, assuming we’d discovered the source of my pain, and deciding to put off surgery until I had a solid chunk of time to recover. Then Monday comes around, I go under, the doctors go in, and…

Nothing. Zip. Zilch. Zero. No endometriosis, no scar tissue, no cysts, no nothing.

Don’t get me wrong, I am relieved I don’t have endometriosis! As a painful medical condition without a cure, endo is not something anyone wants to have. But this begs the question: What do I have? If all my insides look hunky-dory, and believe me, they checked everywhere, what’s causing all the pain? Could this be part of my fibromyalgia? Or is there an underlying hormone condition spiked by my menstrual cycle?

We have no idea.

Right now, the only thing I can do is wait, and then discuss my options with my GYN at my post-op appointment next week. Until then, the thing I need to worry about is recovery, because even though they didn’t have to remove anything, they did cut me open in 5 places, and that’s something that requires a bit of recuperation.

I will admit, I’m feeling particularly frustrated. Part of me wanted there to be tons of scar tissue and endo so that I could have a feeling of justification for all the doctors who doubted my pain, and if I’m honest, so I could justify some of that pain to myself. In order to kill a monster, you have to be able to name it and right now it feels like we’re back at square one. I’m like Wile E Coyote after his rocket propelled skates shot him past the Road Runner and into the cliffside: back to the drawing board.

The positive is this; we’ve ruled out a few causes of my pelvic pain. And my fellow WorryWarriors know, sometimes that’s the best you can hope for.

What’s Wrong With You? Part 3: ME/CFS

Myalgic Encephalomyelitis. As difficult to diagnose as it is to pronounce, ME is more commonly known as Chronic Fatigue Syndrome. I personally try not to tell people about this diagnosis as they generally believe it’s an excuse to be lazy or complain about being tired. The catch-all name “Chronic Fatigue Syndrome” doesn’t help with misconceptions either. While fatigue is a symptom, there are many others including: Post-exertional Malaise (PEM), sleep problems, muscle and joint pain, reoccurring pressure and tension headaches, orthostatic intolerance (dizziness and lightheadedness when standing or sitting upright), depression and anxiety, and memory and concentration problems.

Like many conditions found on this blog, ME/CFS is difficult to diagnose and treat. There’s no blood test or lab result that can confirm or deny this illness. Because of this, patients with ME/CFS might feel anxious talking about their problems to family, friends, or doctors.

“You just need to sleep better!”

cute cartoon woman with insomnia on the blue background

If I had a dime for every time someone told me I would be less tired if I charged my phone in the other room, or put it away two hours before bed, I could actually afford the stupid thing. I will be the first to admit my phone is probably not helping my sleep patterns. There have been many nights when I’ve fallen down the Youtube rabbit hole of cute Kim Namjoon videos and suddenly it’s 3am and I’m not even in my pajamas but oh look, another BTS compilation video! But let’s back up. One of the symptoms of ME/CFS is insomnia and sleep disturbances. Yes, Kim Namjoon’s beautiful face found all over the interwebs is not helping my sleep, but it certainly is not the cause. And to answer your questions, yes, I’ve tried that herbal tea, that essential oil, that meditation app. And they’ve helped! But they’re not going to solve my problem.

“You’re just out of shape!”

Okay, yes. That is a fair statement. I haven’t been in proper shape since I was in high school and playing field hockey. Even then, I was mostly living off of a teenager’s fast-paced metabolism and fun. Now I’m a sad adult living off stress and alcohol. Oh how the times have changed. Jokes aside, my lack of physical activity is not causing my fatigue, my fatigue is causing my lack of physical activity. I wish I could go out dancing with my friends, walking around downtown Towson and not worrying about my legs suddenly turning into overcooked noodles. Sometimes I can, sometimes I can’t. That’s the joy of an episodic chronic illness- you never know when it will strike.

“So, what can you do?”

Short answer: I don’t know. Longer, more accurate answer: I don’t know for certain. Some days my energy is up, and I am able to lead almost the same life I could 5 years ago. Other days I need to take a rest midday if I want to make it to my afternoon/evening classes. This usually means a lot of planning ahead on my part and occasionally using a mobility aid. When I had the great opportunity to spend some time abroad, my friend Linnea and I went to the British Museum. We wanted to see everything, and that place is huge! We decided the best way for me to get around was in a wheelchair borrowed from the museum. That way I could still have some independence in wheeling myself around but could take a break if I needed to. And Linnea and I didn’t have to pay for bag storage; my lap worked just as well.

If you know and love someone with ME/CFS, the best thing you can do is be flexible. And if you are someone living with ME/CFS, know that you are not alone. It can be a frustrating, depressing, and infuriating illness, and I completely understand. Remember that the only person who has to deal with the after effects of overexerting yourself is you, so take the time you need to recuperate, and then get back out there and be the kick ass, WorryWarrior you are!

Class is a Pain in the Ass: Surviving School with a Chronic Illness

Ah college. A wonderful time filled with doubt, debt, binge drinking, and research papers written the night before. School can be lots of fun and it can also be tear-your-hair-out stressful. When you’re a spoonie, the stress has a way of following you on days when other people would be skipping. Sometimes it seems like all you do is worry and make explaining to your professors “I really do like this class, and I take it very seriously, I just wasn’t able to do the homework for the third class in a row” a career.

I’m now *technically* a senior in college (more on the technical aspect later) and along this 4-year path, I’ve learned a few tricks to keeping my spoonie head above water. Hopefully this post will help my fellow Worry Warriors. Have a tip or trick of your own? Feel free to post in the comments below! Let’s keep this conversation going!

Be like a Boy Scout

The best trick I learned, after spending an entire semester bumming ibuprofen off friends, was that it always pays to be prepared. I always carry ibuprofen around with me in my bag because part of a chronic illness is never being sure when the pain will strike. What I carry with me on a day-to-day varies based on that day’s activities. Know I’m going to be doing a lot of hand-sewing in the costume shop today? Better bring my wrist braces, just in case. On campus shuttle not running today? I should make sure I’m wearing my sneakers, so my feet don’t tire out as quickly. At first you might feel like a doomsayer with all these ‘just in case’ items in your bag but trust me: it only takes one time without to be grateful you planned ahead.

Do some research

While colleges don’t fall under the Individuals with Disabilities Education Act (IDEA), they do have to comply with the Americans with Disabilities Act (ADA), meaning there should be a Disability Support Service (DSS) on campus. Before the semester starts, reach out to your school’s DSS and see what paperwork is needed to qualify for accommodations. Most universities will have an easy to fill out form for your doctors, and once it’s submitted, you’ll be assigned a case officer to help decide which accommodations best suit your needs. This can be anything from extra time on tests, to bi-weekly check-ins to make sure you’re staying on task. It depends on your needs and your university’s ability to provide.

Become your own advocate

I’ll admit, this one is a bit tricky. Being an advocate for yourself is difficult in the best of situations, but this is a skill that every spoonie, worry warrior, and general pain fighting badass needs to perfect. While your doctors and your DSS case manager will do what they can, ultimately it is up to you to get the help you need. If your case manager isn’t offering an accommodation you need in order to be successful, don’t just sit there and suffer in silence. Speak up and tell them what you require! I also recommend stopping by your professors’ office hours and taking some time to go over your DSS forms and discuss your thoughts about the upcoming semester. If the semester has already started, it’s not too late! Your needs are important, and your professors want to hear from you. Remember, you have the power! Use it!

Take a break

Taking a break is important for everyone, but is especially important for spoonies. If you’re studying for an upcoming test, make sure you have a timer set for 15-20 minutes, and once that timer goes off, give yourself a 5 minute stretch break to help all your muscles breathe, including your brain. During the week try to plan something fun or energizing to look forward to. Maybe meet a friend for coffee before class or take the time and paint your nails one evening. Proactive self-care is crucial for a successful semester. (Pro tip! Proactive self-care isn’t just the pretty bubble baths and skin care products you see on Pinterest. Sometimes it means sucking it up, cursing the day you decided to take this stupid class in the first place, rolling up your sleeves, and doing the research paper you’ve been putting off for a month.)

Time is of the essence

Recently I’ve found a new way to inadvertently annoy my roommates: lots of affirmations and inspirational quotes taped up everywhere around the apartment. I do mean everywhere. On the mirror, the fridge door, above the sink, by my bed, across from the toilet! I see them all the time and they remind me of ways I want to live my life. My favorite is a Chinese Proverb that helps me with my spoonie time management: “The best time to plant a tree was 20 years ago. The second best time is now.” Obviously it’s best to nip all this in the bud so you can continue kicking butt and taking names, but maybe that wasn’t an option for you. The best thing you can do is support yourself now. Don’t wait until things seem almost impossible. Think of it as self-care for your future self. Future you will be grateful.

In the same vein, it is important that us spoonies operate on our time table, not someone else’s. Remember above when I said I was *technically* a senior? I say that because even though I’m a senior in college, this is not going to be my last year. I am going to take an extra year of studies. Coming to the place where I could make this decision was really difficult. I felt that I was letting myself down, that I was adding more to my debt for no reason, that I was just being lazy. But the thing is, I know my body better than anyone else. If I push myself too hard today, no one is going to have to deal with the consequences but me. If taking an extra year is what I have to do to keep my class load manageable and my pain levels down, that’s what I’m going to do.The four-year college plan isn’t for everyone. Heck, college isn’t for everyone! I’m confident in my decision because I know it’s what’s best for me. And everyone should operate, not by society’s set timeline, but by what is best for them.

Thank you all being so patient while I worked to get this post up! I am working to have another post up next week!

Updates

Hi friends! For those of you who were waiting for this week’s blog post, that was supposed to be up on Friday, I’m sorry for the delay! As you fellow Worry Warriors and Spoonies know, chronic illness can get in the way of many of life’s activities and sometimes we have to prioritize necessities over wants. This week I’m changing medications and am dealing with all the lovely side effects that come with that, the least of which is a debilitating headache that keeps me in bed. I should have the next post up soon, but until then, I hope you’ll stick with me through the wait!

Why I Dislike the Pain Scale

Have you ever had a headache? Or stubbed your toe? Or accidentally burned yourself because you were too enthusiastic when flipping pancakes? (Just me…?) If so, you can probably remember what that pain feels like. Maybe not specifically, but at least enough to empathize with someone who’s done the same.

But what about more serious pains? Migraines? Broken bones? Herniated disks?

If you’ve never broken a bone, you can’t really empathize with someone who is waiting to get an x-ray. You can sympathize, sure. But, by definition, you can’t empathize.

When you go to the doctor for pain, whether a routine appointment or an emergency room visit, the first thing they ask you to do is rate your pain on a scale of 1-10, 1 being a small annoyance, 10 being the worst pain you’ve ever felt. And for most spoonies, this is exactly the point where everything goes wrong.

Right now, I want you to imagine the worst pain you’ve ever felt. Think about that moment, what was happening before, and how you responded to the pain. Now go talk to whomever is closest to you and ask them what was the worst pain they’ve ever felt. (Don’t do this if you’re on public transport or something. Obviously, don’t be creepy about it. Ask someone you actually know.) The odds are pretty high that your worst pain experience is vastly different than theirs. If I asked my mom, she’d probably describe the labor she went through with me and my twin sister, super preemie with an emergency c-section, or the pain of my brother’s labor which progressed too quickly for an epidural. If I asked my dad, he’d probably describe the time as a child he jumped off a barn roof onto what he thought was a pile of snow, but what was actually a giant block of ice, and shattered bones in his legs, feet, and ankles.

Hopefully you’ve made better life choices than my dad, so your worst pain could be very different. Or you could be one of the wonderful saints on earth called “Mom” and you could know exactly what my poor mother went through.

Everyone’s ‘worst level’ of pain is different. If you’ve never broken a bone before, then you smash your finger by accident and break it, suddenly that’s the worst pain you’ve ever felt. So that pain could be a 9. But if you’re my dad, a broken finger is around a 6, because it’s not the worst pain he’s ever felt.

This is frustrating for doctors and patients. When I first started dealing with back pain and muscle spasms, the pain was so bad I could barely move. When I went to the health center on campus they asked me to rate the pain on a scale from 1-10. I told them it was a 7-8. And the doctor did not believe me. She asked me if I was sure I was in that much pain, that it was highly unlikely I was experiencing that much pain, and that regardless she wasn’t going to prescribe me any pain killers so I should keep that in mind. She insinuated that I was exaggerating because I wanted a prescription, and then when I tried to defend myself, she told me there was nothing she could do, and that I should just take some ibuprofen.

Unfortunately, this is not uncommon, particularly for spoonies. The pain scale is relative, and that makes it hard for people to understand. Personally, this also causes a lot of anxiety. I hesitate to use higher numbers on the scale for fear that my doctors won’t believe me, and that one day I might have a different feeling of what a 9 is and won’t be able to express it because I’ve already used a 9.

The best way I’ve found to get around the Pain Scale is to describe my pain with visuals and compare it aloud to different pains I’ve felt previously. I keep a list of pain descriptors in my medical binder, as well as my personal Pain Scale to show to doctors when the need arises. That way I can show them that for me, a broken finger would probably fall around a 5 or 6, but intense back spasms and pain from endometriosis could fall around an 8 or 9.

As difficult as it is for patients, the pain scale doesn’t do much to help doctors either. Pain is one of the hardest things to diagnose and treat, and as difficult as it is to remember, doctors are humans too. They aren’t omniscient beings. Living with chronic pain is hard and can feel isolating. It’s important to keep an open dialogue with your care team and if you ever feel that you aren’t being heard, speak up for yourself, or bring an advocate so that your needs are met. What’s most important is that you are getting the best care possible.

Alex here! I will now be updating every other Friday, so keep an eye out on the 22nd of February!