Chances are you remember the story of the trojan horse from school or remember hearing about it from a book or movie? It’s the one about the huge hollow wooden horse constructed by the Greeks to gain entrance into Troy during the Trojan War. The story goes that the Greeks gave the people of Troy the large wooden horse as a gift convincing them that it was something that would protect them and make their barriers impenetrable. Yet—some of the Greek army hid inside and upon night fall attacked them from the inside.
Over the last year of this global pandemic, I have heard countless conversation both in the media and from individuals about all the risks associated with COVID. We have all been watching and waiting and worrying about when and if it will hit us, or someone we love, or maybe it has already impacted us in some way.
The mental health issues associated even with the potential risks are all something we face right now. We are all living with the fear of this silent attack on our bodies. We don’t know when, or if, its coming—and whether or not we have passed it along.
Doctors, researchers and scientists are working late into the night to find ways to protect everyone from any potential threat, and the scariest part is we don’t know if we are affected until its too late and the barriers have been breached inside of us.
I understand these emotions all too well.
The ongoing mental roller coaster of I need to protect myself and my family but I need to keep living my life! I need to protect others but what about the affects of social isolation?
These are feelings we are all becoming too familiar with.
But for me, these feelings are not new; these are feelings my family has wrestled with for years. You see, my child has a rare autoinflammatory condition: a genetic mutation that he was born with that causes his immune system to turn on itself and never turn off. His body can one day —without warning or cause—develop what is called Macrophage Activation Syndrome, causing a cytokine storm. These are words that you may have become a little bit more familiar with, as you have heard them more in the media as one of the life-threatening risks of COVID19.
So, what is a cytokine storm?
Essentially it is a severe immune reaction in which the body releases too many cytokines into the blood too quickly. Cytokines play an important role in normal immune responses but having a large amount of them released in the body all at once can be harmful. A cytokine storm can occur because of an infection, an autoinflammatory condition, or other disease. It may also occur after treatment with some types of immunotherapy. Signs and symptoms include high fever, inflammation (redness and swelling), and severe fatigue and nausea. Sometimes, a cytokine storm may be severe or life threatening and lead to multiple organ failure.[i]
So, what do we do?
In the last 6 years of managing my child’s illness, it’s been a process. It’s been a hard balance for both us and the doctors, and you must live moment by moment. So here are five tips that we use to manage our mental health when faced with uncertainty:
- We cannot treat the what if’s, but we have to consider them
- We monitor, we watch, and we take precautions wherever necessary
- We don’t take unnecessary risks
- We enjoy the moments of peace, and
- We live our lives thankfully and as normally and with as much joy as we possibly can.
I know that all of this may be easier said then done, (trust me—I know) and sometimes it can be more complicated than usual. My child’s health has always been a puzzle and there isn’t always an explanation so some days will be harder than others. But give yourself grace, practice mindfulness, and allow yourself to find joy in the day to day.
If you are struggling with mental health issues, do not hesitate to reach out to your health care provider for help, especially during these uncertain times.
If you are interested in reading and learning more about life with a rare autoinflammatory disease, we would love for you to follow along on our journey by connecting with us on our social media page.