On Monday July 3rd, which is normally a joyous day as it’s my father’s birthday, my family went into mourning for one of the most influential family members we’ve ever had. Our dog of 11 years passed away that day in her favorite place, under the swing set in my mothers arms. She was 14 and had been inexplicably ill for the last month. And I’m sure you are all thinking oh this is just a sappy post made because she’s sad; but truly I think there is something we can learn from her impact as Spoonies. DC (our dog) had been with me since my POTS began. Unfortunately for me, my disorder began at a time when I was mostly forgotten by my family; they were all consumed with problems that didn’t involve me and thus neither did their thoughts. DC never forgot me though. She was often the one waking me up after I passed out by licking and scratching at my face. When I had migraines she would lay with me so I could hide from the light in her fluffy black fur. When I was 14 and entered an abusive relationship I would cry into her fur in a corner in my room as she basically hugged me (she was almost my size). When that boyfriend became an ex and decided that he was going to change that by coming to my home, DC was the one who’s wolf like appearance and large teeth scared him away; for me that was the first time she saved my life. The second time was when my POTS and migraines were so out of control and I was in so much pain that I felt like nonexistence was the only option; and feedback from my mom who had begun locking my in my room when I had a migraine or growing impatient when I was POTSy only increased that feeling. Now, I don’t blame my mother for her behavior, there were other problems going on that she had to take care of, and I never disclosed to her many of my emotional traumas that led to my attempts. My abusive ex had beaten me regularly, the bruises I covered with long sleeved hoodies even in summer, and for a little over a year he got away with having raped me before a football game. This combined with my pain led to 3 suicide attempts; first I tried drowning myself in the tub which of course didn’t work, then I tried taking a whole pack of cold pills thinking that would do it, finally I laid fully clothed in the warm tub, cut my wrist a little, took a bottle of pain meds, and went to sleep. I woke up rather quickly to the feeling of scratches against my arm, face and chest, the sound of barking, and her licking the blood on my wrist. I quickly vomited up the pills as I leaned over the side of the tub; and then passed out again. DC stayed with me, and kept licking and scratching to wake me. Eventually she was successful in fully waking me (as I continued to vomit) and I realized I could never put her through that trauma again. From then on, she was my angel. No one other than my psychiatrist has ever heard this story before today; but I think it is necessary for every Spoonie to know that sometimes when you feel like giving up, there are forces that will stop you and loved ones that you will scare. Chronic pain patients have some of the highest rates of suicide amongst other medical conditions, but for many of us there is hope and even sometimes an angel like mine. Thanks to her diligence 8 years later I am here in grad school working to become the professional that helps people who are in those shoes I wore, so that maybe I can be someone’s angel. So I hope she rests easy on the other side of the rainbow bridge.
**Side Note: I also understand the necessity of palliative care and I fully back physician assisted suicide. But I feel that it takes a team of doctors and your caretakers to help you make that decision because no one should have to go through that pain alone.
Today is one of my “good days”, it’s not that I suddenly feel healthy; it’s more so I can tolerate normal activities in spite of my illness and pain. As of now I am adventuring new parts of my home town with my boyfriend in 90 degree weather. This worries me solely because with POTS heat is the enemy and I already have enough trouble staying hydrated. But I only get to see me boyfriend a few times a month because I’m away at school so I’m not giving up these precious days. Also tonight is my father and sister’s combined birthday bbq; and I would never miss their birthdays. I found out that my sister has actually already had a party with her friends and invited my other sister but not me. When I addressed this with my mom I got a hurtful response “she probably just assumed you would be too sick to come anyway”; tonight at the bbq I will put on my bravest face and prove to them that I am not this sick frail little woman who can’t do fun things with friends and family. I’m fact yesterday I went on an adventure with my boyfriend through the river in our town and through some old vintage shops and went to the best diner all before going to celebrate my nephews 5th birthday. I made it without a cane yesterday and I rocked my port proudly. And next weekend I’m going with a friend for a bachelorette weekend at her cousin’s private beach house where we will be doing all the wild and crazy things that bachelorette parties entail. My friend didn’t assume that I would be too sick to come. She was ecstatic to hear I was coming and fully embraced my need to bring supplies. So today I will adventure and I will keep proving that it’s not all bad days for me.
So anyone with chronic pain, severe depression, chronic fatigue, or Ehlers-Danlo’s syndrome can tell you, every day hygiene for healthy people is a struggle for us. And don’t judge us for this fact, for me with my POTS a hot shower could make me pass out, with my port (which is accessed 5 days of the week) I can’t get it wet, and with my migraines a hot shower will make me vomit and increase my pain tenfold. This is all not to mention that with my chronic fatigue and depression it takes a lot of energy and motivation just to get undressed for a shower. This is a struggle many of us know, but we hide from the public. Now I struggle to shower, so I have adapted to sponge baths on days when I have to go out and I can’t get myself to shower, if I’m not going out though I’m not moving. But there is one pro to showering less often than a healthy person, it actually increases the health of my hair by not exposing it to such heat so often and it preserves my lovely violet dye job a little bit longer. I have also adapted to not having energy to wash my face or brush my teeth, I keep a water bottle and spit cup with a dollar store toothbrush on a table near my bed and face wipes on my nightstand, this way it takes less energy, but it still gets done. Another pro to showering less, I save a ton on shampoo and conditioner which since I use the salon brands is a lot of money. Con to this, I rely on dry shampoo and Pinterest “how to hide dirty/wet hair” to make it through my week and still look professional. But if someone you know or love that has a chronic illness seems to be having a hygiene problem, don’t judge them, they’re trying their best. But maybe carefully choose your words to encourage trying this great new shampoo you found or invite them to get a blowout so they don’t have to bother with their hair for a few days. Just be kind, and remember we’re trying our best and for you our best needs to be enough.
We live in a world where we are all connected, not just in the ways that our parents, teachers, and preachers, tell us but through the technology we thrive on. After all, through this computer I’ve built this relationship where you care about my thoughts, but you’ve never heard my voice and I’ve never seen your face; that’s the power of technology. But there’s so much more those of us with chronic illnesses can do thanks to technology that we never could before; we contact our doctors through patient portals, we track our water intake with health apps, we use our phones as pedometers, our smart watches are heart rate monitors, and that’s become normal for us! Would you have believed ten years ago in the possibility of essentially text messaging your doctor or their nurse every time a small problem came up so that you wouldn’t need an office visit? For those of us with trouble getting out of bed each day let alone drive ourselves to a doctor, this is a miracle, when we run out of our numbing cream for injection sites or other such problems. We can track our own health data to accurately describe to your doctor what your quality of life is like; I use apps that track my sleep, my heart rate, and my stress on my smart watch and I use apps to track my fluid intake, how often I remember to take my meds, how often I exercise, how often/severe my migraines are, and what I eat on my phone. When I step into any of my many doctors’ offices, I have a comprehensive profile of my current condition that they can access if I simply send it to them in an email or even a text message. I just found out at work that there are water bottles that sync up to your phone and track your water intake down to the sip. This technology is incredible and it could lead to leaps and bounds forward for those of us with limited ability to leave our homes. So to all my readers, look into this technology, especially if you’re struggling to even get an actual diagnosis, it gives your doctors a broader picture of you and honestly an app can remember your diet and activity levels more accurately than you.
Throughout my life I have always been a severe introvert, but thanks to my extroverted brother I’ve always had friends. In high school and college I began to attract my fellow chronically ill peers, they treated me almost like a model for what living like this looks like. But when you’re friends with someone with as miserable of a disorder as you, or even the same disorder as you, we often subconsciously begin to compete. This has cost me two friendships, but one I’ve rekindled we’ll get back to that later; I had one friend with severe POTS like me and one friend who had chronic migraines like me, now both of these are spectrum disorders and both make me miserable. But Mel, who had POTS, always wanted her illness to be the center of attention, she wanted the world to know she was sick and give her attention for it, whereas I was more of a caretaker towards my sick friends I would take her to the ER sometimes multiple times a week and sit by her side throughout the night but I was never “sick enough” for her to care when my POTS made me too sick to help or go to class or even function. She ended up leaving college, and with that our friendship ended, because honestly could either of us justify that relationship? Then there was Brit, I lived with Brit for a year and a half, she had migraines 3 or 4 times a month, I had them 3 or 4 times a week. I never intended to compete with her, we were truly best friends, but in actuality I was hurting her the same way Mel hurt me. Whenever she had a migraine I would always say “me too” or “I know that feeling” which for me was just typical response. Little did I realize but I was making her feel as though her migraines weren’t as bad as mine and her pain wasn’t as valid as mine. In fact, we ended up in a screaming match about it once, which is where all of this came out. I realized what I had done and she forgave me, but I never said sorry. And that still haunts me to this day. She moved out a year ago, and up until a month ago I hadn’t heard a peep from the girl who was my partner in crime for our senior year of college and my best friend. But as fortune goes, she became engaged to a wonderful man she met while we still lived together and their wedding is in a few months. She invited me to the wedding, that was the first I’d heard from her. Then she invited me to her bachelorette weekend. And last night we had a dinner “date” at Arby’s, which is where we would always go to eat when we felt sick or wanted to talk about our problems, we even sat at “our” booth. I realized she still wanted to be friends with me, I just needed to put the effort in to, and remember not all Spoonies are alike but all of our pains and feelings are valid. Bonus good news, I found out her migraines have seriously reduced in frequency and pain level over the last few months. So to anyone reading this, don’t make the mistakes Mel and I did, don’t invalidate someone else’s illness just because you have your own, it can and will cost you some of the best friends of your life. For now I’m trying desperately to climb back to the top of Brit and I’s friendship tree.
My cane has become fully integrated into my life now, it follows me everywhere I go unless I’m with my boyfriend whose shoulder I use as a walking assistance device. But my cane has become part of me, kind of like how your car becomes part of you, so I gave it a name. My shiny cheetah print cane is named Alexam, which is a combination of the names of my two biggest stability providers when I get POTSy and wobbly. But I’m wondering, do other people do this? Do people name their wheelchairs or scooters? Or am I crazy?…Just a thought bubble of the day.
Like many people, I shop when I feel bad. I particularly have a problem with online shopping while on my narcotic pain medications. My solution for this has always been to follow another family motto “never pay full price for anything”, so I buy exclusively from sales and clearance. But here’s where the trouble came in, I had a bad bout for about 3 months straight this year where I felt no hope which only worsened my clinical depression; and was on prescription pain killers multiple times a week and when I wasn’t on those I was on prescription benzodiazepines to reign in my irrational panic about how I’ll be able to live my life how I want to while I’m this sick; essentially I saw no light at the end of the tunnel. This began a bad trend, one day I’d find something cute for $3 on the Wish app and I’d think “this is great”, but then I’d keep scrolling and adding to my cart and two weeks later in the mail ta-da here’s a package I don’t remember ordering! I spent nearly $400 in 3 months on retail therapy on the Wish App, H&M’s glorious clearance section, Zulily, and Amazon. It isn’t that I couldn’t afford that, I mean if I couldn’t keep working I wouldn’t have but if I got better I could afford this no problem. Well I got better, sort of, and I’m still receiving packages I ordered while I was sick; now I call them my surprise presents. But seriously, this was a completely unhealthy coping mechanism, and you would think as a mental health counseling student I would have recognized that; but all I recognized was it felt good to hit enter on my orders. My aunt has severe spina bifida that has kept her out of work my whole life, and I remember I would go stay with her for weeks at a time and we would do this same thing, only in the time before internet shopping, so Home Shopping Network purchases. That’s probably where I picked up the habit, but I don’t blame her, these were my own choices. But to my fellow Spoonies, I highly recommend locking up those credit cards when you’re feeling down because trouble follows close behind them. And for now I’ll enjoy the spoils of what “sick me” did; even if it was wrong.