The COVID-19 pandemic required people around the world to adjust their lives. For me, the adjustment was twofold: adhering to pandemic rules, plus dealing with my own disability and imposed isolation rules.
Disability comes with its own set of rules. I consider myself fortunate if I am able to accomplish my activities of daily living (ADLs) without using any extra energy. If I am expecting a visiting friend and want to impress them with cocktails and a feast, I stand a snowball’s chance in hell of providing either of those.
I consider myself lucky just to look presentable for a guest. Giving them a ride or meeting them out somewhere is out of the question. I know it would take me a week’s worth of valuable energy to do that.
My Life Revolves Around Conserving My Energy
Can isolation be imposed, but not in an “incarceration” sense? Absolutely. How do I deal with this circumstance?
Winters in upstate New York are long, snowy, and cold. On top of that, my world is incredibly small, and it’s simultaneously regimented and inconsistent.
It’s small because my main focus is getting through my ADL’s, everything from a shower to getting dressed, so I am physically and mentally prepared for my day. Contending with uncooperative legs (my left one is paralyzed) uses twice the energy as would normally be necessary, especially for getting dressed. So I have to engage in energy conservation with everything I do.
By definition, my world has to be regimented. I am methodical with everything I do, careful to avoid simple mistakes such as putting the wrong leg into my pants leg; not doing this correctly results in a mess. I have to eat three square meals a day at around the same time, with the meals easily accessible by being pre-made. I do appreciate not having to fend for myself when it comes to preparing meals, because doing it takes too much energy.
Inconsistency Is a Given When You Have MS
As many of us with multiple sclerosis (MS) already know, inconsistency is one of the hallmarks of the disease. As much as I try to make a mental template of a seemingly viable solution to a certain dilemma (such as getting out of bed), it doesn’t always work.
Like many people, I turn to YouTube videos to learn new skills, but I have to take care when watching, because specific MS issues are not taken into consideration. A good example is the “log rolling” for getting in and out of bed, which requires bending both knees. I am so riddled with spasticity that I cannot bend my left knee at all. So the video instructions don’t really work for me. I suppose I can improvise, which is exactly what I do.
During the day, I encounter inconsistency all the time. I think a great deal of this depends on my energy level. If I’m fatigued, I am doomed to failure. Nothing seems to work like it was intended to. We often blame inconsistencies on the “good day, bad day” syndrome, but given the way energy plays such an important role, I’d say inconsistent energy is what’s behind good and bad days.
The Support of Old Friends and New Makes All the Difference
One should never be alone to the point that one feels lonely or empty. I never was fond of the term “housebound,” but that is what I have become. I am at the point when people come to me, I don’t go to them. This includes friends and family who will come and visit me whenever possible.
I have an MS support group that helps me get through the rough times in my MS life, so I try to keep questions about MS or any negative thoughts for my group. People who don’t have MS rarely have a reference point upon which to understand it.
My partner, David, has by default become my caregiver. It so happens that he is taking a 10-day trip to the Midwest, and now that I have secondary-progressive MS, accommodations had to be put in place for the time he will be away.
My imposed isolation, not something of my own making, has taught me a lot about myself and the way I work. I make friends easily, which is innate and not something I work at. In my current situation, friendships are the most important treasure I could have.
Earlier in my life when I was moving around and in no way established anywhere, there was always the National MS Society and other resources only a phone call away.
Today, my friendships from college are still solid and recently resulted in 11 classmates coming to my house to help with the construction of my new handicapped-accessible home addition. These are classmates from my class during my undergraduate years; now in their late fifties, many are empty-nesters, so they have time to come and help me.
I will not see my college friends during the winter months, but I have made local friends, who out of the goodness of their hearts, have made a schedule to make sure I have meals while David is away. We live in the country, and neighbors have volunteered to plow the driveway so others can come inside to help me.
All the support I receive from others helps me to tackle various situations such as getting dressed and preparing myself to learn to face challenges. This unconditional support makes isolation worth accepting and learning about.