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Are you okay?

By Matt Cavallo

March is MS Awareness Month, which makes it the perfect time to take inventory on how you are feeling. People living with multiple sclerosis often try to put a brave face on for everyone else. There is a certain responsibility in having a chronic illness that makes you feel like you have to reassure everyone you are doing fine, but are you really okay?

I’ll let you know right now that I am not. I put on a front for my wife, my kids, and my coworkers, but I have been having a tough time lately. Life has been a bit of a rollercoaster. I have been taking on too much and some of the cognitive difficulties I have with MS are starting to show. 

My wife recently lost her grandmother, Barbara, who passed away on the morning of her 94th birthday. Barbara was one of the sharpest people I knew. Long before Google, if you had a question, Barbara would have the answer. That started to change during the past couple of years as dementia set in. I could see her using strategies to try to remember a person or a topic, but it became evident that she was struggling.

In many ways, her dementia mirrors some of my cognitive struggle. If information isn’t critical for me to retain then I tend to let it go. So, people are getting frustrated with me and saying things such as “I told you this”, or “I emailed you that.” I just truly have no recollection, so I see myself using the same compensatory strategies Barbara did in her later years as her memory faded. 

This is really affecting my work. I see things falling through the cracks I would normally be on top of. I try to use tools such as email, calendars, and other technology to compensate, but I find myself talking to the boss all too often about how my performance isn’t what it used to be, which creates a feeling of uncertainty. All of a sudden, I went from an employee of the year candidate to concerned about my job. Mostly this is because of my cognition. This is not okay.

This is just one area of life where I do not feel okay. Cognition effects my personal life as well. My kids call me out for using the wrong words or not remembering what something is called. While they may think it is a joke, how do I tell them that MS is messing with my mind? 

In addition to my mind, there are other things I am not okay with. I have talked in my articles about my struggles with weight loss. I am not obese, but the doctor did tell me I need to lose about 20 pounds. I am also growing older and things that were once easy for me are becoming harder. When I think about how I feel inside, I am not okay.

It is actually refreshing to type this as too many times I have passed off being okay, when really, I am not. They say the first step to fixing a problem is admitting the problem exists. So, now that I have admitted that it is a problem, the next step is to address what is making me feel not okay.

For example, if I lose twenty pounds, my clothes will fit better and I will feel better about myself. The problem is that it is not as easy as it sounds, so I have to be okay with the strategy of how to get from here to there. I have to accept there is a transition phase and it might take some work on my part, but if I am willing to put in the work, I will be okay.

Addressing my cognitive issues is a more difficult discussion because I don’t have control of it or the ability to reverse the damage. For these reasons, I feel tremendous loss, sadness, and frustration. In my next article, MS and Mental Health, I will talk about strategies for how to work through not feeling okay as a result of MS.