With Complex, Chronic Illness…
THE ACCURACY! 😒
The pandemic gave people with chronic illnesses a sense of belonging. Now they’re back to feeling like outsiders.
People assume you aren’t sick unless they see the sickness on your skin, like scars forming a map of all the ways you’re hurting.
My heart is a prison of, Have you trieds. ‘Have you tried exercising? Have you tried eating better? Have you tried not being sad, not being sick? Have you tried being more like me?’ Have you tried shutting up?!
Yes, I have tried. Yes, I am still trying, and yes, I am still sick.
Sometimes monsters are invisible, and sometimes demons attack you from the inside. Just because you cannot see the claws and the teeth, does not mean they aren’t ripping through me. Pain does not need to be seen to be felt. Telling me there is no problem, won’t solve the problem.
This is not how miracles are born. This is not how sickness works.” ― Emm Roy
Ultimate Guide To Letting Go…
I apologize for not being able to write this weekend, as intended. I’ve been suffering a few weeks now, not knowing exactly what was wrong. I hadn’t been exposed to anyone, so I was more in the mindset that maybe my migraine treatment was not working, which can happen. It’s not an exact science and your body can metabolize certain things faster than the next person, but yesterday things got so bad with my migraines that I went back to questioning what was causing my skull and face to hurt so much.
I took my new CGRP drug (Nurtec ODT) and hoped it would help. It made things considerably worse. By the end of the day, my skull was on fire, and I pretty much knew what was wrong. Because I’ve been suffering for weeks, I also knew I needed to see a doctor ASAP.
I went to Urgent Care to be seen, and to avoid any possible Covid exposure in my doctor’s office this coming week because Boston is still seeing an increase in cases and hospitals aren’t very safe. I’m glad I did. For the first time in a long time, going into a new experience with someone I’d never met before, I was treated like a human-being who was not “drug seeking” or trying to be a pain in the ass. I was treated like an intelligent patient who simply wanted to feel better, not worse. In less than an hour, I had my diagnosis, my prescriptions had been sent to the pharmacy, and I was glad I know my body as well as I do.
I will be down for the count for the next ten days, perhaps longer, though, as they chose to run a PCR test on me for Covid, and the results probably won’t be back until the 14th. Suggesting I hunker down for the time-being was a given. Even though I am pretty certain I wasn’t exposed to anyone who is actively ill, the nurse practitioner thought it would be a good idea since I could very well be asymptomatic. I can already feel the first dose of antibiotics working. This one is new to me and hits hard, almost as if it’s telling you, “You are NOT okay. You’re sick and you need to take care of yourself.” This is true.
I’ve been dealing with so many rough things that when I first started feeling lousy, I attributed it to lack of quality sleep. At one point, during the summer, I was almost convinced I had Covid, except Fibromyalgia patients can experience many of the flu-like symptoms of this particular virus. When I started feeling better two weeks later and had no fever, I didn’t sweat it. I’ve been extremely careful. I am not running a fever. In fact, I’m running at about 95 degrees. I can taste and smell everything far more than one might care to. I’ve mostly had head and an insane amount of face pain, sometimes stemming from my neck (Stress and tension in an arthritic neck is horrendous. I wouldn’t wish this pain on anyone. Add in rain and snow. I wanted to rip my bones right out of my body. My injured foot from January was so bad the other day, I was nearly in tears from the pain.), and this morning I woke up with a sore throat. I am grateful to the person who saw me today because there was a lot of compassion present. I will be informing the company she works for how amazing she was, because everyone deserves to be treated as I was today, but especially as someone who has experienced over a decade of medical trauma, gaslighting, and neglect, it meant the world to me.
If you need me, I’ll be writing and reading this week, in between taking my medicine and resting as much as possible. Oh, and don’t touch my Starbucks cup. As of thirty minutes ago, it became Strawberry Bubly and a heavy pour officially made it 100 proof. When I’m really sick, I usually do a couple of shots of whisky or vodka a day to disinfect my throat and speed up healing. This is a tried and true method that always works for me, and it’s something I know other cultures also incorporate into healing. I can’t hang with you if you can’t shoot straight vodka. 😉 Not the American crap, either. It’s got to be Russian. There are rules.
Be well, everyone, and stay safe.
‘As lockdown eases, those of us with chronic illnesses must not be left behind’
Please Don’t Compare My Chronic Illness Life to Your COVID-19 Life
Pain Diminishes Us
“Pain diminishes us, and it is so important to remember, in the midst of pain and everything that pain takes from you, that still … you are enough. You are enough just as you are. You are worthy of love and kindness. You are enough. And you have enough.”