I Wish They Knew
Last updated: October 2020
I am so tired of being tired. I'm tired at failing to balance my disease gracefully and to ensure that those close to me don't flee from my inability to connect with them at random times.
My "dance with MS"
Let me tell you a little bit about me and my "dance with MS." I was diagnosed on October 22, 2012, (can't forget), and I thought that I was in control of my disease and doing "my thang." After recovering from my initial exacerbation, I was able to work full-time, socialize with my friends on a regular basis, stay connected with family, and maintain my physical fitness regime. Life seemed back to normal.
A car accident abrputly altered my life
However, over the years, I have noticed that my ability to maintain balance in my life was becoming strained. Being honest, I did notice it, but hey, "I'm still good" (sarcasm again). Then, on October 1, 2018, I was rear-ended by someone on my way into work. Little did I know, once again, in that instance, my belief that I could maintain a healthy balance in my life was abruptly altered. The accident, coupled with my 6 years of "dancing with MS," resulted in me having to receive seven months of cognitive therapy and two years of long-term disability, which I am still on today. Oh, and did I mention that my 76-year-old mother has been living with me for the past year, due to early signs of cognitive impairment? Yes, I have had just a "little bit" going on in my life the past few years (please note the sarcasm). But now, back to "I wish They knew..."
Isolating from friends and family
The "They" that I am referring to is composed of my family and my social network of friends. I know that we all have a "different dance" with MS. In my process, I happen to be overtaken at random times with severe "brain fog" and anxiety. I can go six months or even a year and then, BAM! I know what is happening, but I can't stop it or the anxiety and depression that accompanies it. I feel anxious about the possibility of disappointing people, so I isolate. By isolating and not connecting with my friends and family, I become anxious because I have not reached out to them, so I isolate even more. It is a vicious cycle that I cannot stop. All that I can do is wait it out, rest, and regroup for a few weeks until I feel like myself again.
What I wish others knew
Here comes my BIG, "I Wish They Knew" list. I wish They knew how badly I want to return to my regular level of social interacting. I wish they knew that I can't snap a finger and make the "brain fog" go away. Let me go back. I wish they knew what "brain fog" felt like so that they could understand what I mean when I say I have "brain fog." For example, I once shared with my best friend that I feel like people have forgotten about me because I go M.I.A. sometimes. I call it "self-preservation" and call it a societal public safety measure. LOL. With a sincere heart, my friend replied back to me by saying that I needed to reach out to people in my life more often. Hmmm, I never would have thought of that. (Please note the sarcasm.) So, I wish They knew that I didn't choose this for my life. I wish They knew that I didn't choose to have multiple layers of my life altered without my consent. I wish They knew how guilty I feel when I have to cancel plans at the last minute because my brain is too tired to function properly. I wish They knew how guilty I feel when I haven't returned texts for a week because my cycle of depression and anxiety was too intense, and had nothing to do with them. But mostly, I wish They knew that I am still getting to know the different "faces" of my new self, 8 years after receiving my diagnosis of MS.
Yoga, health, and wellness
MS is a tricky and cunning disease. It plays games, so you never know when it decides to come out of hiding. But, being honest, my diagnosis has allowed my life and spirit to grow in so many ways. To aid in my rehabilitation from my MS exacerbation, I started doing yoga to improve my strength and balance. A few years later, I completed my 200-hour yoga teacher certification. Through yoga, I have had the ability to travel to Costa Rica and Mexico for yoga retreats and get attuned to perform Reiki. I have become more conscious and informed about nutrition, health, and wellness, and how these interplay with calming my disease expression. I became a certified Health Coach and have received different modalities of alternative healing therapies for my own health and wellness. None of these wonderful things would have happened without my diagnosis of MS.
I wish friends and family understood
All of that to say, I wish They knew the multiple complexities that are affiliated with an MS diagnosis and management. But maybe, the real work is with me. My life, our lives, are perfect as they are. We "MS Warriors" have the right to be sad, angry, anxious, scared, happy, joyous, excited, and the right to feel renewed. We may fall down for a 10 count, but our warrior spirits fight hard and we eventually get us back up. With an "Invisible Disease," I know that it may be difficult for "Them" to see or acknowledge that I don't feel well, so their level of patience with me may become short. Sometimes, I feel that they have a right to be frustrated with me, but sometimes I nourish myself and choose my needs above others without allowing guilt to enter my thoughts.
Regarding aaallllllllllll of this, and that, and my never-ending journey of "dancing with MS," I wish They knew...
Have any of the following helped to reduce your pain? Select all that apply.