Being stuck at home is new to many people. But I started sheltering in place in 2013 when I was diagnosed with Lyme disease. I spent three years on IV therapy, seven days a week, and walked only to the bathroom and back. The years after IV therapy was just as rough.
I required assistance with everything. The pain unbearable–going to the bathroom, taking a shower, walking down the stairs were so difficult. Mentally I struggled, too, trying to remember to make appointments and phone calls I needed to. I couldn’t even handle putting my medicine in the case each week without mistakes. I felt so much guilt. I thought my husband would leave me as soon as he could, or maybe he would have an affair. Why couldn’t I keep up with showering and fixing my hair? When was the last time I wore makeup?
But I have learned to overcome my guilt by dealing with facts, not fears, and knowing I can handle whatever reality throws my way.
In addition to Lyme disease, I’ve been diagnosed with fibromyalgia, cognitive dysfunction (which includes lack of balance), and dementia. Dementia is the real kicker. There are a host of other ailments I suffer from, and I’m sure I will have more as the years pass. I was told early on that Lyme would cause problems that seem unrelated for years to come because there is no cure and my immune system remains compromised. This past month I found that to be true again when.
I was diagnosed with a new immune disorder, hypogammaglobulinemia. Hypogammaglobulinemia is a problem with the immune system that prevents it from making enough antibodies called immunoglobulins. Antibodies are proteins that help your body recognize and fight off foreign invaders like bacteria, viruses, and fungi. Without enough antibodies, you’re more likely to get infections. People with hypogammaglobulinemia can more easily catch pneumonia, meningitis, and other infections that a healthy immune system.
This makes the COVID-19 pandemic especially scary for me. I get stressed out when I watch more than an hour of news a day, or see people not wearing masks.
In general, though, I’m very used to having to stay at home. I quit driving years ago and have only driven a handful of times in recent years. It’s not that I couldn’t drive, but my husband came along to take notes at appointments since my memory is not what it used to be. Don’t get me wrong. I miss the independence of driving without my husband having to take off work. I also miss being able to see my hairstylist, getting a manicure, and finding great spots for taking photos.
I have to get out of the house for my mental health, at least a little bit, regardless of my immune deficiencies. We still go for a Starbucks run as often as possible. We have a whole sanitation process down, including wiping down his mask, credit card, steering wheel, and both of the top of our cup to the bottom. We take all precautions when he brings groceries in and packages, we wash our hands immediately and wash again after putting everything away. He doesn’t want me to get sick, and I know he does everything possible every time he leaves the house.
I’m ready for this to pass and it will pass, but for now, I’m staying calm and entertained indoors as best as I can. I hope you can do the same.
by: Melinda, Hypogammaglobulinemia Patient
International Pain Foundation; iPain Blog Post
