In The Darkness
As a rare disease patient I have learned to be a very good patient. I can do hard things and I am brave. I can trial new medicines that usually make me react. I can have and recover well from surgeries. I can self inject to manage reactions and avoid the ER and I can get through daily life and ignore the many symptoms that may arise. This is my normal. I have worked almost a decade now to regain control of my life. I have pre and post medication protocols, plans for when I do react, plans for how to prepare for things like a vacation that used to overwhelm me to the point of feeling like I couldn't travel. Having these plans gives me a sense of control and safety.
Part of what has been so scary about the pandemic for me and our family is the unknown. The unpredictability of what would happen if I got COVID, the lack of meds I would be able to use to support me through it and how my already complicated body would handle such a hit. It is why we stay masked and weigh our risks so carefully. Because our reality is already complicated and so much is unknown about COVID, of the virus itself or the risk that long-covid could set any progress I have made backwards, or even worse take any hope of new progress away for the foreseeable future.
And thankfully for the last 3 years we have stayed largely healthy. I rarely do get sick with the usual viruses as I often think my mast cells are already on such high alert they let nothing in. This is good when it is viruses and not so good when it is food I'd like to eat.
I suppose it should come as no surprise than that on the first day of 2023, I became unhinged when I suddenly had a sore throat. I had lost control. I had what one has when they have a virus, a sore throat and congestion and off and on body aches. And I also had off and on anxiety when I felt really badly having no idea what would happen next. Was it COVID? Will my body be able to fight whatever this unknown virus was? I thankfully confirmed it is just a virus- not Covid, flu or RSV but I am still working on recovering. Yes, it was a hit to my system but so far I am making it through.
It was certainly not the way I thought I would start 2023 but I think we all know to expect the unexpected at this point. And while a new year often brings hope for all that may come, this time of year feels almost opposite to me. The days are darker and colder and our world feels smaller as we can do less outside which is our safest way to see people. And of course viruses of all types run rampant. And while most of the rest of the world can move on to a a more normal state now even in the midst of a new covid variant and flu spike that is not true for us. We can’t let our guard down yet, this past week of being sick is further proof of that. While logically I understand this it is still hard not to feel that we are missing out on living and the hopelessness that can comes with that.
I am never one to wish time away but right now I find myself struggling with that feeling right now. These months certainly bring a level of stress that I do not have in other times of the year and it hard not to long for Spring.
As I sit with these feelings and the stress of this past week both mentally and physically on my body I remind myself that sometimes it is OK to feel this way. I do not have to feel badly for longing for easier days. It does not mean I am wishing away life or ungrateful for the blessings I know that make up my life. It also does not mean that I won’t find joy in the present in small ways while I still simultaneously long for the days that may feel safer and brighter. So for now I am focusing on recovering from this virus, leaning into a slower pace that I know comes with these winter days and being kind to myself as I ride the waves, some easier and some harder, that the next two months may bring while I wait for the lightness to return.
“It is the way of all things that the night ends and the light returns. The light will always return.” ~ Brian Andreas
