January 2022
Happy New Year! With a new year comes a new you. It’s a natural time to make changes for the better. For so many, this could possibly be an easy task. Many people make resolutions to eat better and to work out for example. People with medical setbacks could find making resolutions a daunting task. You could have doubts and question your abilities. But, if you need a date to get you going then this is the time for you.
I’m always up for a challenge these days. Luckily, since the end of this spring I remain on a good streak. Feeling good with more energy encourages me to return back to life. From when my FND symptoms first started in Dec. 2019, I stopped living. There were times I felt like giving up. I laid in bed day in and day out. Needing assistance to transfer to a wheelchair just to use the bathroom. That little movement would rock my world. I struggled to eat and drink. Having multiple non-epeleptic seizures daily quickly drained everything from me. Knowing I went from being an active person, a teacher, a wife, a mom, a friend to someone who was now a burden. I felt like I was a burden financially and also physically. I look back at it now and recall so many medical tests, hospital stays, rehab to get me eating and walking, and continuous doctor appointments to get me to where I am today. I am thankful for all of the treatment, my friends and family for never giving up on me. It’s good to look back at the past, especially in this case to see how far I have come and against all odds. To see what accomplishments I have made shouldn’t be ignored but acknowledged. With FND, I can easily relapse and have symptoms appear again. I have to always be aware of that and know that I have to be smart moving forward.
In my case, when moving forward I must move slowly and smartly but allow time to rest. I have had some day outings with the family and even had a girls long weekend in Cape May recently. I go out with people I can be comfortable with and who I know can handle things if anything was to happen. However, although I go into things having that awareness I don’t dwell on it or think about it during the events. I find the more I think about the what ifs, all the feelings/sensations I may feel can quickly speed symptoms up. I don’t want anyone to think FND can be totally controlled solely by your thoughts though. As referenced on the NORD (National Organization for Rare Disorders) website, they state that “Functional neurological disorder (FND) is a medical condition in which there is a problem with the functioning of the nervous system and how the brain and body sends and/or receives signals, rather than a structural disease process such as multiple sclerosis or stroke.” Staying calm and focused could help you to carry out the task or activity. For example, during physical therapy my therapist wanted me to imagine my limb doing the action before trying it. The visualization helped me do the action. If tremors begin while doing the action, I was asked to focus on it not moving. Sometimes, I was able to decrease and even stop the tremors in order to carry out the skill. Now, of course this doesn’t always help and is not a cure by any means. I just wanted to share something that I found useful along with trying to stay calm, be with someone who also remains calm and I even have told myself “no” or “stop” many times. I feel like I tell my own self nope this isn’t going to happen and that I’m in control even if it’s not technically true.
In my last blog, I mentioned that I’m in the process of getting my license back. I had gotten approval from my doctors and was just awaiting on motor vehicles to give the final approval. Well, watch out because I’m back on the road! I have slowly started driving around town with my husband in the car. I wasn’t sure how it would be since it’s been several years since I last drove. I was a little tense and noticed that I wasn’t even sitting back on the seat. But, the next time out I relaxed greatly. This week, I picked my kids up at school. The smiles on my kids face when they saw me in the pick up line was priceless. My youngest even smiled the whole ride home just watching me. It’s things like this that makes me keep going forward. To see my sons so happy for me and how far I’ve come is one of the best feelings. With this accomplishment brings on the next want in my life. I want to get back to working in some capacity. I could only clean my house, do laundry during the day for so long. My mind is ready to handle more. A local part time job would be perfect for me to get in the swing of things. Then eventually get back in the school as a substitute before having my own class again. Even during rough times like this, I want to be back in the class. Helping kids with special needs is what I was meant to do. I love every minute of it and can’t wait to be back.
My goals that I will be working on is to keep building my endurance physically, drive independently and get a local part time job. Even though I’m going with multiple goals, I know that they are achievable. I’m focused and determined to live this life on my terms. What are your goals?
Beep Beep!