I first have to say this isn’t my art. It’s just one of those things I found off the internet that struck me. Between my social media profile and my blog, I have had many people tell me that I am their blueprint for how to live.
I will first give myself 100% credit for taking really good care of myself. I absolutely put caring for my body as a number one priority. I eat super healthy, I engage in a daily yoga practice, whether it be in class or at home, I’m working to stay in love and not anger, I’m engaging in tons of self reflection on how to evolve to be a better person, but I’m also terrified.
I was diagnosed with meningitis a few weeks ago. I was supposed to follow up with my neurologist shortly. A call from his office this morning said his clinic is closing immediately. I’m still managing extreme headache, terrible forgetfulness, fatigue like I’ve never experienced, and if I overdo it, even slightly, I begin to slur my words very badly.
I asked if they could get me in somewhere else right away. I was met with a “no”. The pressure in my head is so bad, that I want to poke a hole in it to relieve the pressure. It is painful beyond anything I can explain. It’s unrelenting. It makes me cry as I just can’t believe how much it hurts. It’s awful. I put on a brave face so people don’t have to know as people leave when people don’t feel well and never get better, not everyone, but most. An average wait to see a neurologist locally is 8 months.
I’ve taken many pictures of myself in my illness and my victories over the past couple years as it’s mostly for my benefit. This picture was almost a year ago when I had horrible tremors for 11 days and my body would contort into weird positions even in my sleep. They couldn’t figure out why. They put me under anasthesia to do a complete MRI of my brain and spine and could only find that my spine had degenerated a lot more significantly and was beginning to have an S curve in my lumbar spine. It’s hard to show this picture, but this is my life as much as taking care of myself.
So I’m terrified as I was supposed to get follow up treatment for my meningitis. One of the things that has gotten me by is my very strong and stable mind. I seem to manage the physical stuff just because I have become so emotionally centered even with all that’s thrown at me. And of course they threw a psych evaluation at me for this neurological problem, which I was totally cleared.
I’m sleeping constantly and in those moments I’m awake, I feel my goals and dreams slipping away as my body just can’t. My mind is processing processing processing, but I don’t have the energy to sit up to do much. I’ve been getting to yoga class and doing my home practice a bit each day as I chose to come off opiate therapy to manage my back pain through my yoga practice.
My days are spent like this mostly in total fatigue hoping and dreaming for health even as I do as much as possible to facilitate it from my end. I dream of reuniting with my son, but I can’t think about it tons as the tears will flow so hard that my precious tiny bits of energy are completely gone and know the only way I have a fighting chance of seeing him is refilling my cup and charging my battery.
I couldn’t even really move in this picture. I was just trying to enjoy the bit of sun coming through the window and snuggly dogs on my feet. I have many diagnoses leading to lots of confusion to what causes what and my best ways to manage my diseases that have no cure.
The past two months have brought on what I can only explain as medical PTSD. I reached out to my medical providers, I went to the ER, I asked friends to stop in, I asked people to call… With it being the holidays, people were busy. It’s ok. They almost lost their friend, patient, loved one, mother. I’m figuring out many people really care about me, probably in the thousands, but the people who would take 15 minutes to go to the pharmacy for me is slim to none.
Community is a lost art. Sick people are scary. I can’t fault anyone. But I do sit in great fear with pretty serious neurological symptoms and no neurologist. Luckily, I saw my pain management specialist today who works with people who have neurological problems. I believe she should be elevated to sainthood. She was aghast at my care. She put in a stat order for me to get into a different neurologist, but the prescriptions to help are sitting at the pharmacy as I fell asleep at 5 pm as I’m just SO tired. Who has the energy to ask people when the answer is so often no as people are busy.
Community is a lost art. If you know a chronically ill person who is struggling, give them a phone call, pay them a brief visit. It could mean the difference between life and death. You might think of your friend. You might even pray for them. You might even admire their bravery, but I will tell you those things feel like nothing without a real connection.
Sorry for the rather sad post, but this is about authenticity. I’m not one to curl up and feel sorry for myself. I plan to get to yoga in the morning no matter how tired I am as it keeps me centered and grounded. I will continue forward in my fear and trepidation, but I believe it’s better to be real about it rather than just share my victories
An image of my poor, painful nights attempting to stretch away my painful leg spasticity.