Chronic Illness · Life Posts · Mental Health

Disappointed But Not Surprised

Disappointed but not surprised is definitely the mood for 2020. With everything that has happened and is currently happening, this year is shaping up to be one big :/ face. Being separated from friends is my norm. Due to the complexity of chronic illness and symptom flares I often have to cancel physical plans and spend time via text and Skype. But for some reason, this isolation has been worse on my mental state. I’ve had to go off one of my psych meds for a sleep study I’m having done in April, so that isn’t making things any better. That specific medication affects the REM sleep cycle. Since they are looking for Narcolepsy, it could skew the results if I’m still on it. I’ll have to manage until then, which is easier now that I am seeing a therapist again. I feel this new provider is a good fit and am hopeful my mental health will finally start to stabilize.

In the realm of Narcolepsy, I’m having a moderate gait problem that we’re thinking is cataplexy. It’s…frustrating to say the least. I can get around my house without too much trouble, I wear my knee brace for support or use my cane. But I am trying to get a pair of forearm crutches, they would give me more support and would be more efficient for navigating my small house. Before my gait problem I was needing my wheelchair for longer trips out of the house where I was walking or standing a lot. Now I’m using it for short trips as well, like to a PCP appointment or the pharmacy. My legs are giving out too often and I’m too much of a fall risk. It’s like my brain sends the signal to move and instead my legs decide to lose all muscle tone. I don’t fall flat on my face thankfully, but I crumple to the ground. The whole thing; the gait, when it happens (cataplexy can be triggered by strong emotions, mine seems to be stress/anxiety), the fall actually looks very dramatic and kinda fake unfortunately. All of it makes my imposter syndrome creep out and not having answers makes it that much more intense.

A more recent curve ball that came my way was that I thought I had appendicitis. And so did my doctor, who sent me to get stat labs and a CT at the one location where they were sending everyone with upper respitory symptoms. It was right next door and had availabilities within the next hour. Thankfully, the staff brought me back into the IV area when someone else entered the waiting room, as a precaution. Also, turns out it wasn’t appendicitis, so thank the gods no hospital, ER trip, or surgery. It is however, colitis and I’m on antibiotics and probiotics. I have a follow up with my PCP and my GI doc because while my symptoms aren’t worsening, they aren’t getting much better. Which means my GI most likely will want a colonoscopy and biopsy to see what’s causing the inflamation. We are thinking my Mast Cell Activation Syndrome is the cause as my GI tract has always been the most heavyily hit by that condition.

During this time of isolation and unnerving health problems, I’ve been trying to keep busy. Mainly by crafting, writing, and doing all the things I put off last year (cleaning my desk, organizing my medical files, etc.). Because of my ADD I have a hard time doing things to completion and in a timely manner. That is unless I am hyperfocusing and spend a full day chronologically organizing 5 years worth of medical papers. I guess a small positive about this whole pandemic is that being confined makes me get shit done.

I hope y’all are staying safe and connected to your support systems. I want you to keep an eye out for the positive, it will help you avoid slipping into the deep dark hole that seems to be growing larger by the minute as of late. Even if it’s just a tiny sliver of good, a silly cat video, finishing a craft you’ve been working on, hearing your favorite song and performing it in your living room. Grab on and don’t let go. Acknowledge the darkness around you, but trust in the light you’re embracing.

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