So, we’ve had a few hard weeks here at the Dickinson house. Between isolation, homeschooling and the general fear of what is happening in the world, this has not been normal for us. And then there was more…
On March 4th, my husband Simon came home sick from work. I don’t think he’s done that in the past 17 years. He was feverish. Had a cough. Body aches. This was just before the WHO declared Covid-19 as a pandemic. But Simon was sick. He had a fever for seven days – up and down. He was tired.
I called my rheumatologist the next week, to get a gut check on what to do. For the first time in two years, he told me not to take medication while someone in the house was symptomatic. On March 28th, both Simon and I had a nasal swab to be tested for Covid-19. It took 8 more days for the results to come back, and they were negative. So, that was good news.
But given the fact that there was a high chance of a false negative, the doctors told us to self-isolate for as long as we were symptomatic. Simon was symptomatic for six weeks. It turns out he had walking pneumonia, but you see what we were dealing with? 6 weeks of me being off treatment.
Oh, and fear.
I am constantly battling between the benefits of the drug I take to slow down my disease, and being young and on an immunosuppressant. I constantly think about what the long term effects will be on my body. I am basically choosing between losing mobility or potential for long term side effects later on in life. And I battle this with myself every day.
My go-to is heeding my doctor’s advice. Because the Anklyosing Spondolitis was progressing aggressively, I have chosen mobility over the side effects of the drugs. Under normal circumstances, my family has been supportive of my decision.
Now is not normal
Given the fear right now, no one is supportive of me going back on regime. And that’s a challenge for me. Because now, not only am I feeling unwell, due to my treatment…but I am also feeling alone.
One of the cons of stopping my treatment for as long as I did…is that I feel like I am back to square one. Most weeks, I take the drug on Thursday night. The side effect I feel is like the worst hangover you’ve ever had, with a side of intense joint pain for 24 hours. Friday night isn’t great, but by Saturday, I am feeling like I can handle it. Maybe my body had built up a “tolerance” or maybe in my mind I had.
Either way, I am back at the beginning. This is my second week, and I’m bedridden because I threw up all night. By myself. Because Simon was working. I felt isolated and alone.
From a patient perspective, there is a certain amount of anxiety that comes from being medically vulnerable during a medical crisis. Making a choice that goes against my family’s wishes adds a whole new layer of stress.
Here’s what I’ve learned. I recognize that everything to do with Covid-19 is out of my control. The only thing I control is how I manage my body and how I keep myself healthy during this time.
I am listening to my physician. He is the trusted healthcare professional who manages my care.
And I acknowledge my fears about going back on treatment. This is hard, as a mom, a wife, a business person and a family member. So I got informed and made sure I had good knowledge in my hands. My commitment to myself is that I will continue be careful not to make my healthcare choices from a place of fear. Not my fear. And not the fear of my family. Doing this…this is the hard part. It is easier to make a decision from a place of fear. But that is not the right decision for me.
Be well and be safe, my community. We are all in this together.