Tomorrow morning I plan to do one of the scariest things since I decided to have my port surgery, I am going to go to the gym. “Why is the gym so scary?” you might ask, and I have quite the answer. I have a cane, and a handicap parking pass, and a port that is accessed 5 days a week, all of which make my illnesses a little less invisible. Now I don’t want to bring my cane to the gym because I feel its a short enough distance that I can walk without it, but what then becomes of my image to strangers as they see me park in handicapped parking because I cannot walk more than 200 feet without getting tachycardic? It is to begin remedying this inability to move long distances that has me going to the gym in the first place, so my abled appearance doesn’t make me any less sick but it can still offend others. I live in fear of that note I often see other spoonies find on their cars that accost them for their choice of parking space and accuse them of faking. If it were mere strangers whom I run the risk of offending I would not be worried, but this gym is on my (very small) university’s campus so these are people I know. My plan to avoid people is to go when the gym first opens at 6:30, since that’s the time they are the least busy but I still feel panic when I go over my plans for tomorrow. I guess I will just have to see how it goes. To whoever is reading this I wish you many spoons today!
Recently my POTS has been more than finicky and has led to frequent dizzy spells and bouts of fainting; due to these circumstances I had to miss my classes last week and my cane is now glued to my hand. My absence did not go unnoticed by my classmates, many of whom commented on my cane (I had managed to avoid using it for class until last night) and handicap parking pass with “wow! you’re a strong lady!” or “are you ok? what happened?”. I welcomed these questions and notes of support from my classmates but one person in particular stuck out to me; a girl who I befriended the first day of the semester had asked me how I was doing and about the purpose of my cane. I answered her questions and at first didn’t think twice about it, but then last night after class she came up and apologized because she felt her questions to be rude in some way. That was a harrowing moment for me, as I have always been keen on educating my peers about my illnesses and advocating for others like me, but I took a second thought. Is it disrespectful to ask people why they need a cane? In our society, it is commonplace for us to look away or try to ignore the adaptations our differently abled citizens may use. Now this is for good reason and I respect that, not everyone is as comfortable with talking about their disability as I am. But I wonder, is there a way to convey that it is ok to ask about my illness? I have considered getting dysautonomia awareness gear to wear on occasion, but I feel like that’s a bit much. Do any other spoonies have any ideas?
Today I begin my newest endeavor toward a healthier (or at least more stable) me; I am leaving my job to focus on school and more importantly my health. I do this at the behest of my doctors, who all agree that my full time grad school and full time work balancing act was just aggravating my illnesses and making me sicker which in turn affected my performance at school and work. So today I end an era and begin a new journey. I will set out, cane in hand, to find new methods of self care and maybe even rehabilitate a little. I am nervous because this transition means I will be living without any new income, but I have scrimped and saved for this day and am hopeful that my budget will hold out. So here’s to a new path, wish me luck and spoons!
All of my chronic illness warriors out there who have had to use steroids have probably had the experience of “Moon Face” and those of you lucky enough not to have experienced it have still probably heard of it. Moon Face is spoonie slang for swelling of the face and/or body; typically this is due to meds (more specifically steroids). As I was sending my partner his good morning “make an ugly face” Snapchat when I noticed my face looked like a blimp, I turned off the filters to be sure it was really what my face looked like and it was there, the dreaded Moon Face. I used to be ashamed of my appearance whenever I got Moon Face because I thought it made me look ugly and I would get the ever running swarm of elderly ladies at the supermarket saying they “could just pinch my chubby cheeks” (if you’re not my grandma don’t dare try). But as I have grown older and my relationships with my core circle of people has solidified a little more I don’t worry as much about my Moon Face, because my people know that Moon Face means I haven’t given up, that I’m still getting treatment, and that I have a chance to be healthier than yesterday. My Moon Face is part of my journey to health, and it’s only temporary. So to all of my fellow CI warriors, rock that Moon Face. You are perfect the way you are, and I know that’s the ultimate cliché, but in real life being strong enough to roll with these punches makes you pretty damn perfect. So battle on, Moon Face, spoons, and all.
When I first began dating my partner, I was sure to disclose my health situation after the third date. I explained to him what my situation was, which unfortunately for him was much better than I am now; but I did give him fair warning that I could get worse. Surprisingly he responded with affection and almost a sense of respect for the fact that he had never noticed before that I even was chronically ill (we’d known each other for a while before we began dating). He comes from a family of doctors, and his sister is chronically ill as well; he told me “if you don’t deserve unconditional love because you’re sick, then how could my sister ever find someone to love her?”. This was the most amazing sentiment anyone I had ever dated had said to me. When my illnesses began to spin out of control last fall, he was by my side the whole time. I would continuously ask “Are you sure you want to board this sinking ship?”, to which he would always reply “Of course, because you’re not sinking”. I had been repeatedly told by exes that I was a broken person, that I was damaged goods, or that if we had kids they wanted donor eggs because they didn’t want children with my DNA. But my partner has been amazing and kind, he cares for me as if we were already married. He’s held my hair back as I puke on the side of the highway from a migraine, he picked up my colon prep for me from the pharmacy before my colonoscopy, he even offers to drive me to my doctors appointments. As of last week we have been together for one year and 4 months, and he gave me a beautiful promise ring to remind me that when he sees his future it always has me in it. He is the first mate on my sinking ship, and he’s helping me find ways to patch my holes.
We’ve all been asked after a bout of illness “how are you feeling now”, “Are you better”, “Back to normal yet”, and many of us answer with a simple “I feel better”. For your average person who just got over a case of the flu, these words are praiseworthy; but for a chronic illness warrior these are some fightin’ words. It feels as though every time I speak those 3 words I am tempting fate, like saying “Bloody Mary” in front of a mirror. Last week during one of my most terrible weeks for pain yet, I made the mistake of using those words. After leaving the emergency room my mother called to see if their treatment had worked, and silly old me used those 3 fateful words to reassure her that her baby was ok. Within half an hour of the drive home from the emergency room the pain had returned tenfold. I was crying from pain the rest of the ride home and after I slowly worked my way to my room with the help of my friend, who had been driving me around all day, I slumped into my bed with every icepack I own running down the right side of my body. I had cursed myself, but really this ending was an inevitable outcome from the poor treatment I had just received. The true problems of this curse lie in a second feature. On “good days” or “low pain” days, we tell ourselves “I feel better” and that can be the worst thing to tell yourself when you’re too stubborn to pace your activity level as well as your physical energy, and your mental energy. “I feel better” can be a trick to us spoonies, and can lead to severe energy deficits, flare ups of our illnesses, and a multitude of other problems. And the worst part is having friends and loved ones come to you after you’ve over done it and ask “But you were so great yesterday, why aren’t you ok today?” or the hollowing “We had plans, you said the other day you were feeling better. How could you let me down like this?”. Therein lies the true curse of “I feel better”; in the words of Admiral Akbar “IT’S A TRAP!!!”. So when you feel like using those three beautiful words that you pray will last forever, remember to pace yourself and anticipate physical reactions if you just got over a mysterious illness like I had.
To the wonderful souls of doctors that actually listen to your patients, I would like to express my upmost gratitude for your bedside manner and your willingness to listen before you “help”. This past week I encountered quite a few doctors after a Botox shot for my migraines accidentally hit a nerve. I was in severe pain down the right side of my body from Monday until Saturday and addressed my concerns with quite a few doctors. First I messaged my neurologist through her patient portal and told her that I thought my migraine was getting worse, rather than message me back asking about the type of pain or how bad it was on the 10 point scale her nurse simply sent a message back saying “I have passed along your message and it will be addressed as soon as possible. I have yet to receive a reply. I do not blame Dr. H for this, it is primarily up to her nurses to keep her on track with important patient messages and emergencies; and in person Dr. H is one of the best listeners I have encountered as far as doctors go. I especially like that she understand that I have a background in neuroanatomy the biological aspects of her treatments, thus she speaks to me in words that my parents don’t understand but I fully grasp. In truth I hate when doctor’s speak to me in laymen’s terms after I have expressed my background knowledge; it becomes hard to advocate for myself when I am spoken to like an ignorant child. I called doctors upon doctors and even went to the emergency room only to be told “oh that’s just an atypical migraine for you”, within half an hour of leaving the ER my pain had completely reappeared because the treatment they gave me was for “just an atypical migraine”, as if in the 21 years that I have dealt with these migraines I haven’t learned to tell the difference between a migraine and other types of pain. This is what I dealt with from doctors all week until Saturday. I attempted to self advocate and express my concern that I wasn’t having a migraine and was terrified that it might have been a stroke, but they all gave me treatments as though it was a migraine so the pain simply continued to progress. By Saturday I had received a call from my mother letting me know that she had set me up an appointment with a new doctor at my GP’s office and that I should come to town and we could go together to find out what was going on. Let me tell you, this doctor was incredible, her first words after greeting me were “So I know the nurse already spoke to you about your symptoms, but could you tell me in your own words what is wrong?”. It was a miracle, I found someone who would listen! Over the course of the week my mother and I had been emailing each other different research on possibilities of what was wrong with me and we both concluded that it must have been a bad injection from my last treatment that Monday, and that Dr. H probably hit a nerve; so I was ready to sit and discuss exactly what was wrong, how I felt, and what I thought it might be. Dr. J, the new miracle of a doctor, ran a few tests just as a precaution. Due to the lack of swelling of the lymph nodes and she trusted my opinion that it was not at all a migraine, she concluded that I must be right and actually found the needle mark for which one of the 27 shots probably hit that nerve because she noticed it was a little knotted and bruised. She listened and treated me as an expert on my own body and it was amazing. I know there are more doctors out there who have the same compassion, as most of my specialists are of this understanding disposition. I am forever grateful for doctor’s who listen when you self advocate and who don’t assume that you are clueless about human anatomy. Not only have I gathered a plethora of knowledge on how the human body works, I have also had a lifetime of experience as a patient with chronic illnesses and have had them all well explained by doctors throughout the years. So when a doctor allows their office to be a space where I am the expert on my body and they are the consultant, it seems to make a big difference in how fine tuned your care is to your individual health. So here’s a shout out to all of the doctors out there who listen when we need you, you are literally our lifesavers.