MS in the Time of Corona
It has now been 7 years since my partner Chris and I were diagnosed with Multiple Sclerosis (him more than me). It has also been about a bajilliondy years since we have left our house to wander the world unfettered, put on proper pants, seen more than one friend anywhere but our back deck, or felt truly human.
For more context, at this stage of our MS, Chris receives bi-annual infusions of Ocrelizumab, sold under the brand name Ocrevus. It is an immuno-suppressive drug approved by the FDA in 2017 for the treatment of Relapsing Remitting MS. The goal of this treatment is to reduce the occurrence of relapses and slow down the progression of the disease. One of the side effects is an increased risk of infections, due to the suppression of the immune system. However, our care team recommended Chris should continue his treatment uninterrupted in this pandemic, and take necessary precautions to minimize the risk of infection.
It’s September now, and we are a bit more liberal about venturing out into the world. However back in March of 2020 (the year of our dark lord) “necessary precautions” looked a little like this:
- Fully remote working (no exceptions)
- 100% no contact grocery delivery only, no in-person food shopping (Thank you Amazon Whole Foods Market!)
- no food delivery or take-out, only groceries and home cooking (I miss you, Frutta Bowls!)
- no doctor’s appointments, trips to the pharmacy, post office, gas station, and if there is an urgent need to leave the house, only with gloves and a mask
- decontamination procedures if leaving the house is necessary included but were not limited to: full change of clothes, immediate shower, and generous use of disinfectant wipes
- all deliveries are to be disinfected before opening and/or thoroughly washed before cooking and consuming
-No visitors under any circumstances
You get it. Total disruption, goodbye normalcy, pause on 2020.
While we are lucky the costs of my mostly selective Draconian measures were not financial, as is the case for many Americans, there is a mental health cost experienced by adhering to these precautions. My earnest, perhaps overly paranoid, measures were non-negotiable. I think Chris would have been okay with a little less of my drill sergeant tendencies to enforce our full isolation. However I was paralyzed by the fear of him contracting this virus and being too weak to fight it. I was riddled with guilt that I obliviously continued to go to work for the first 2 weeks of March. I had nightmares that all the work we had done together to respond to his MS would be for naught if I cavalierly brought the virus into our home somehow and it claimed him. As a result, I set some pretty hard rules, and there was a cost. There were also some benefits. But, truthfully, the costs were mainly paid by me.
I am a practicing extrovert. I thrive on social interaction. This situation nearly broke me. I need human contact to function. I have had episodes of depression, irritability, lethargy, a lack of productivity and efficiency, among many other adverse effects. Regular online sessions with my therapist have become crucial. Regular Zoom sessions with my friends are compulsory. (Thank you Patch, Jenna, Reno and Miles!). However, there has certainly been an impact that still lingers now that we are more engaged with the outside world. We still won’t visit in anyone else’s home. I’m resentful. I miss cuddling my friends. I am missing watching my newest nieces and nephews grow up. I missed celebrating my niece’s college graduation. I wasn’t able to support my best friend when her mother succumbed to Covid. My mom lost her uncle to Covid and I couldn’t even give her a hug. I’m angry. I snap at people on the street who are not wearing masks on the rare days that Chris and I venture out for some precious fresh air. I hate these people. I viscerally hate them and wish them immeasurable physical pain and suffering. I am told that is not an appropriate way to regard my fellow man.
Chris is an introvert, so from a mental health perspective he is coping remarkably well. This is kind of his wheelhouse. He has been preparing for this moment his whole life. He is killing it at work, and has reconnected with old buddies through the magic of online gaming. However, physically he has not thrived. He has lost some weight. He lost some muscle mass due to being unable to meet with his personal trainer. The lack of walking has had an impact on his balance and the strength in his legs. He has seen some of his symptoms worsen, presumably partly due to the stress and isolation and lack of mobility. He also always struggled with creating an IRL network of support for himself, and while he was making some progress on that front pre-Covid, (boys nights out, weekly D&D sessions, etc) that effort has stalled, and it will have an impact in the future.
The easing of some of my restrictions has meant that we got take-out a few times. Our best friends and some family have visited with us on our deck and it has made all the difference. We even packed up all of our essentials and took off to a beach house for a week of relaxation and a change of scenery. It felt a bit like a different cage with a slightly better view, but I will take it.
I know that 6 months ago I made a choice. Yes, we probably could have been going to the store with masks on, or eating take out or visiting with our families and friends in pre-determined bubbles and outside. For me that risk was not worth it, and weighing it against the cost, I am satisfied with my choice. It has been hard, but there have also been some positive outcomes. I have become proficient at the ukulele. Chris has grown a voluminous lustrous head of hair that we have decided to keep. We are watching the same TV shows together, which is a new development. I have reached a level of cooking and baking expertise I didn’t realize was even possible for me. As with every choice we have to make in response to our MS, we choose to focus on the positive, most of the time.
Most importantly, the additional privacy and extra time and attention to focus only on our little world has allowed us to notice some things that might have taken us longer to notice otherwise. That Chris is struggling a bit more staying balanced, and manages his pain more regularly, and needs help more often with the everyday things. While it sounds scary and sad, it has been a gift and a comfort to have the luxury of identifying and getting used to those things in a controlled environment, taking the time to process it and address it intentionally and deliberately, rather than pushing through it and on with our lives. It has allowed us to hit the pause button on the world for a moment to notice this very real thing that is happening, deal with it together, and incorporate it into how we move through the days, slowly making changes and adapting. That, in the dumpster fire that is 2020, is something I am truly grateful for.
