Don't Forget About You!
Oftentimes when going through a difficult transition, like adjusting to life with NMO, we tend to forget about ourselves. We forget that we, the diagnosed people, are the people living with an additional challenge that we must overcome, on top of everyday life stress. Throughout this journey, I forgot about me, and it took some time to get me back.
Every conversation was about my health
My life before my diagnosis was very active. I used to go the gym, always went to get-togethers with my friends, went shopping, I loved to cook, do my makeup, decorate my house, go on family trips, and loads of other activities. But when I was diagnosed, the topic of every conversation around my house changed, and the focus became me and my health. This change was welcomed in the beginning, and I was very intrigued by all of the home remedies everyone recommended to me. It seemed like everyone around me was so concerned about my health, which I very much appreciate, but it felt overbearing at the same time.
NMO became a central part of my life
As changes started happening to my body, like walking with a limp and incontinence, I was becoming very discouraged, feeling as though I could no longer fill my time with things I really enjoyed doing. I starting losing interest in everyday activities without noticing. NMO started becoming such a central part of not only my life, but my family members' lives as well. Together we felt the stress of NMO and all its symptoms, and tried to navigate this new world that not one of us knew about. It was definitely a life changer all around for my family and me.
I wasn't thriving, I was simply surviving
As the years passed by, I started noticing that I was no longer living life, but more like trying to survive. I say "survive" because I was really living my everyday life depending on how I felt that day. For example, I would wake up with a spastic leg, knowing it might improve later in the day, but instead of venturing out and enjoying the day, I would stay at home. I was limiting myself. Thinking back on those days, I could have gone out and used a wheelchair to get around. At the time I didn’t think it was possible for me to go out and enjoy myself for many reasons: Because I was too embarrassed and didn’t want my family to see me in that condition; Because I was putting a "but" or "or" before each sentence, making it seem like it would be impossible for me to be okay in certain places because it wouldn’t be “handicapped” friendly.
I decided to make a change
Some might say that I seemed depressed, and that could be. But I was also going through a transition without guidance other than Google. I soon recognized that I was no longer enjoying the things I used to enjoy, as mentioned above. Recognizing that, I started my days with music and powerful motivational speechless to get my spirits as high as possible. I would make sure to shower, get dressed, and do my hair and makeup, even if I wasn't going anywhere. It felt good to sit pretty, fresh and clean. I felt ready for whatever the day brought. Some days I even had enough energy to cook a full meal for my family, and that filled my heart.
Integrating my limitations, and learning to live fully
Soon I started planning family outings and trips with all of my mobility devices on hand. That gave me a sense of control over where and how to go out without putting my self in harm's way. Little by little I was starting to feel some sense of normalcy, and so was my family. I finally decided that I had to have a serious conversation with my family, and asked them to please stop talking about my health around me. I didn't notice it for awhile, but their negativity really did affect me, even if that wasn't their intention.
NMO is not going to take who I am away from me
I'm still living, I'm still me, and NMO is not going to take over my life completely. I'm still a mother and have to be strong not only for myself but for them as well. The point is, fellow warrior, please don't forget about yourself and what makes you enjoy life. If you can't go back to what you used to do, try to venture out and find new activities to do. I promise you that people will judge you either way, so you might as well make yourself happy in the best way you can to fulfill YOU.
How much do you share about life with NMO with family and friends?