June 2023
The sun sets later in the day. The air is now warm and even hot. People are out and about enjoying the nature around them. Lake time with friends and those last minute pizza deliveries to the beach. This is one of my favorite times of the year. Spending time with the ones I love is what keeps me going. This time of year could disperse so much joy. You hear about summer vacations, picnics and so many gatherings. But, what if you had some doubts, some worries, and perhaps physical limitations that could hold you back?
Years ago, I could paddleboard, kayak, play beach volleyball, play roller derby, attend parties, be a parent, and teach just to name a few things. I would encourage you to look back at your past life. How you lived, were you happy, what made you happy, or even what did you do? In the very beginning of my disorder only a few years ago, I struggled to compare my past self to my current self. I was the polar opposite to the person I once was. I couldn't understand how someone who was in such good shape could now be bedridden and unable to walk. I didn't want to think about my past life because it saddened me. As the years passed and through so many therapies it was actually my past which made me keep going. I felt like I lost everything. I knew I didn't want this new life and I would do anything to get my old life back. During physical therapy I was told to visualize myself doing the task correctly. That helped me with more than just getting through a session without tremors or a seizure. It is helping me now a year and a half later to do everything that I want to do. I go into things visualizing what I will be doing and how. If I begin to doubt myself or feel off I will focus on the task at hand and not my symptom. I even have found myself saying the task out loud such as saying "step" repetitively to produce strong stepping motions through my tremors. I often get compliments from people on how I look and hearing "it's so nice to see me doing ___". I don't find these comments as unusual. I find them to be a reminder of how far I have come. I want to look back as an example of what I'm working towards. My past self is who I will be again.
During the spring I attended a local women's wellness weekend retreat. I've done this retreat in the past. The previous one that I went to was before the pandemic. I went into the weekend with confidence and knew I would challenge myself with the tasks but would not overdo anything. We were walking down a path that we have walked before. A friend reminded me that the last time we walked that path I had a cane. I also had a seizure during a one mile easy hike. I completely had forgotten that I needed a cane that whole weekend. Here I am this year, doing that same hike, completing yoga, climbing a rock wall and getting to the top with no adaptive equipment. It's things like this that makes me see how far I have come and the direction that I am going.
It's been since January since my last post. I was in a rut. I can't even pinpoint one reason why exactly. I have had many great accomplishments, but, I haven't been able to push myself to write until now. As I'm feeling better and doing more things I'm thinking about the near future and returning back to work. But, again I start doubting myself. Well, what if I won't be as good of a teacher, I should start somewhere local part time first, where should I work, will it be too hard for me, can I multi-task quick enough, am I out of the working field too long and what if I suck. Even as I read this back to myself I can hear the chaos of thoughts speeding through my mind. After a therapy session my therapist wanted me to reach out to a local employer that I would feel comfortable with and would enjoy. Step one completed. I have some feelers out showing a fall interest. Getting back to a paid job truly may be the next boost of confidence that I need.
I try to move around and keep myself busy as much as possible. Of course I allow myself down time to rest. But, I find myself feeling better when I'm doing things. I stay focused, positive and proud. For people with FND and perhaps other disorders, our symptoms can increase or even escalate if you begin to panic and worry. If you are completing a task and symptoms begin, acknowledge them for what they are, tell yourself the reason, modify if needed, focus on what you should be doing and try to follow through with the task. For example, let's say you are weeding and you begin to get blurred vision. You could tell yourself "okay just blurred vision probably because you keep bending down", modify by sitting down to weed, count the weeds as you are picking. By counting, you are distracting your mind and it's also a great grounding technique. You could now even set up a spot to end weeding, go inside and drink a nice glass of cold water. Be proud of yourself for completing the weeding. You did it!
We all get in ruts, we are our own worst enemy and need a little push once in awhile. That is fine and we all go through it. Let's just try to go through it with someone you love.
