I’ve felt pretty uninspired in the last couple of months. I know I’m not alone. I have bursts of focus, but they seem to require all my energy.
During the first week in December, I noticed that a blood vessel had ruptured in my right eye at the location of the stitches from my Retisert. It came suddenly and went away just as fast. It turned out to be nothing… but it threw me for a loop. I’m usually fairly decent at compartmentalizing my eye issues, but it took me a while to drag myself up from the low this time and I know it’s because of everything else going on.
The mental weight of having a chronic illness can be heavy under “normal” circumstances, but in a pandemic, it sometimes feels almost crushing. My older son’s school district is planning to implement hybrid learning for kindergarten next month (they’ve been virtual thus far). COVID-19 cases are the highest they’ve ever been (even without the new variant) and the bar for “acceptable” case numbers per 100,000 people, per County seems to be a moving target. If we don’t hit the goal, we change it. At this point, I’m not willing to risk my vision so that he can spend half his day in a mask. I can’t help but feel guilty. Kids need to socialize right? What is worse – having no social life temporarily or potentially having a blind parent? I don’t want to put myself in the position where I have to go off of the medicine that is preserving my vision to potentially save my life.
If you’re like me and on immunosuppressants for uveitis, you’re a bit down the priority list in terms of the COVID-19 vaccine.
The CDC website states the following, under People with Certain Medical Conditions: “COVID-19 is a new disease. Currently there are limited data and information about the impact of many underlying medical conditions on the risk for severe illness from COVID-19. Based on what we know at this time, adults of any age with the following conditions might be at an increased risk for severe illness from the virus that causes COVID-19:
- Immunocompromised state (weakened immune system) from blood, bone marrow, or organ transplant; HIV; use of corticosteroids; or use of other immune weakening medicines.”
“Might be,” as in, somewhere down the list from those with conditions that “are” at an increased risk. Among those conditions is smoking, which is a hard pill for me to swallow (and I take a lot of pills) since that’s a choice, and uveitis is Not a choice.
I know the line has to be drawn somewhere. In Washington, that line seems to be at least Phase 2 for me (currently listed under “future phases” on the vaccination timeline).
So, I wait. We wait.
Just know that if you are feeling the loneliness of isolation, the frustration of being the one for whom everyone else needs to be physically isolated, you’re not alone (or at least, we are alone, together).
In additions to sites posted on my Stories and Support page, here are a couple of other resources:
- The Ocular Immunology and Uveitis Foundation out of Boston has been hosting its Support Group Meetings via Zoom; you can join their mailing list to get notified.
- There are websites such as Patient Worthy specifically for folks with rare diseases (I submitted one of my blog posts) and communities like “Chronicon” for people with a chronic illness (there is a fee for this one, and I have not looked into it yet).
- What’s Different about COVID-19 for People Who Are Chronically Ill? From The Center for Chronic Illness) which also has a lot of good resources, including a Chronic Illness Reading List.
- Effects of Stress on Our Eyes and Health blog article from Natural Eye Care
I am happy to report that after a year of medication trial and error, my eyes were quiet at my appointment this month. “Finally!” in the words of my doctor, as we both took a breath before she injected my final Avastin shot (hopefully) of the series. (See blog post: “The latest on my uveitis“)
With the official “year of vision” behind us, I’ll continue attempting to manage the stress of life right now in a productive manner, processing information and emotions from the past year. If only my hindsight was 2020!