Immunodeficiency and the Pandemic

Its hard to fully explain in words what it feels like, I have had many challenges in my medical life, I was diagnosed with Autoimmune Hepatitis when I was 14. This was the first bump in a very bumpy road that has twisted and turned through a very unfriendly terrain. I have had times where my platelet count are 0, Neutrophils were 0 and a whole bunch of other fun things which include and not limited to an ICU stay and several bowel operations.

So after my preamble lets get down to how I am going to rephrase total and utter fear fest. So lets break down a day eyes open. A period of time is taken to check my equilibrium. Is everything ok, does something ache, does anything hurt. Then you get up, avoid the news and limit the type of social media you read. The news is a constant bombardment of SARS-CoV-2 numbers, deaths, hospitalizations. These are a constant reminder of the danger that exists. not just outside my house but there is a clear risk to me from people coming in from the outside, food coming in, groceries etc 

The Anxiety builds day to day as the numbers increase because the reality is that if I catch it it will most likely put me into ICU and I won't make it out. Now tell me knowing that reality how would you feel? How would you modify the risks in your life? For me I don't go outside for about 3 weeks at a time, I wear a mask outside and when I go for a walk I plan time and route where there is low risk. It is easy to find yourself quickly a hermit after all the lowest danger is inside without exposure. However, I cant do that because of my health, I have had to see a lot of Drs in person over the last year. I also have to get outside every so often so I don't lose my mind.

So how have I avoided losing my mind, bold of you to assume I haven't, but there is a few things. I used to go to a weekly wargames group, we have two groups I am a part of from that group where we play various games every Sunday. That has helped a lot, talking to my friends online people like Heidi Lindroth, Miguel Rodríguez-Rubio, Kate Tantam, Segun Olusanya and Megan Hosey. That helps flatten out the anxiety and keep me able to manage it. 

Daily life is tough and I am not saying I am having it harder than most, there are Doctors dying to Covid for doing their job. That said I am not going out and things are not normal and its a weight on me. It is an anchor on my neck and its dragging me down and I am swimming as hard as I can. With my friends and family I will make it out but like after my ICU stay I am not going to be the same person I was, I can't be. 

 

In Covid times I have developed another immunodeficiency disorder which also causes painful abscesses Hidradenitis Suppurativa. Another issue eating at my resolve and having been found in Covid times it has meant seeing a specialist has been extremely slow. That in itself is causing anxiety and is adding to the burden already weighing on my soul