“The Lobster in You”
By João Medeiros:
There’s no question that COVID-19 has left an indelible mark on the world. And as everyone around the globe adapts to remain safe from it, as people living with MS, we must ask ourselves: “Am I so safe from Covid that I’m putting my MS at risk?” In other words, is our fear of catching coronavirus stopping us from seeking the essential help and support we need?
It’s important for us to get it all out on the table and take an honest look at our actions.
- Avoid public meetings and crowds
- Avoid using public transport whenever possible
- Whenever possible, use alternatives to routine face-to-face medical appointments (for example, telephone appointments).
- Caregivers and family members who live with, or regularly visit, a person with MS should also follow these recommendations to reduce the chance of bringing the COVID-19 infection home.
Even though it’s sometimes difficult to balance the risk of MS and contracting COVID-19, I always look for information from my NHS and have even participated in an initiative promoted by my neurologist where, for almost 30 minutes, he got to know our biggest concerns. One of my concerns has been access to medication, which has now been provided as two packages in order to avoid too many people visiting the hospital. Another concern was taking MS medication and whether we should stop it. No! We should never interrupt our MS medication as we need it continuously.
In addition to this initiative, my NHS platform generated very useful alerts, such as:
This reminds me of the lobster´s story.
In order for a lobster to grow, at various stages of its life it must shed its old shell and start to form a new one. This means that for about 20-30 minutes the lobster is vulnerable to predators as it has nothing to protect it.
However, unless it embraces this vulnerability, it will never grow bigger.
In other words, a lobster has to be comfortable being uncomfortable in order to thrive.
In essence, this is what we need to do.
Decision making beyond COVID-19 for MS patients can be really challenging. In fact, it has forced me to replan my life. At first this unnerved me, but now I have embraced it.
I have found that entering confinement does not imply to be alone or let ourselves be inactive. For me it was a unique opportunity to enjoy the privilege of being with my family every minute of the day, which I was hardly able to do before, even at the weekend. I dedicated myself to doing things out of my comfort zone that ordinarily I would have put on hold. Reading, writing, and listening to music are some of the things that have kept my brain active during this time.
I have also found Zoom an essential tool in my day-to-day work. It has allowed me to make friends even without leaving the house. It has also enabled me to avoid feeling isolated from those I used to spend time with on a daily basis. In fact, I have felt a real sense of community, despite not seeing as many people during this pandemic. Knowing other people are also in good health makes this new reality a little bit more bearable.
Adopting these new found techniques during the pandemic has helped me keep track of my MS and allowed me to stay busy and remain occupied. Although there are risks associated with making decisions around COVID and maintaining my MS care, as it involves what once were simple decisions to require more thinking, this period has helped improve my decision making process.
Dealing with things in a different way, such as how to face MS at the same time as COVID-19 has created value, not just for me, but for others like HCPS, family, friends who are our best support.
And by shedding that fear, much like the lobster, you can find value too.