I just can't believe that it has been over a year since I last wrote. Did a lot change? Have I gotten worst, stayed the same or have I gotten better? Or perhaps I returned back to teaching? For some of you closest to me, you would know the answers. To those that are battling FND, I hope you are finding peace with your diagnosis and as you navigate life with an unpredictable future. If you are reading just to see what I'm up to, I thank you. I hope you can relate in some way.
I've been really looking at my life. What does my future look like, I wonder. A few weeks ago, I was reminded via Facebook that 5 years ago was my last day of work. Thanks Facebook. How could it be 5 years when it only feels like 3? 5 years have come and gone. That was a hard blow. I of course am aware of all of the improvements that I have made. As someone who is extremally driven, it pains me to not be back to teaching yet. For the most part, I have been able to stay pretty positive during my journey. Don't get me wrong, I had moments early on where I had no hope. I felt like I was going to die or felt like why am I here living day to day like this. But, once I was admitted and treatment started, then I was able to feel hopeful again. I put in the work. I have relearned to walk. I can now handle many environmental stimuli that I was sensitive to. It's been a year and a half since my last seizure. I am now strong and can do so much more. So why can't my brain and mental health improve fully. The only symptoms that I'm dealing with includes word retrieval issues, hyper sensitive to certain noises and having trouble multi-tasking when there are other auditory stimuli.
Experts state that FND toggles between Neurology and Psychology. Due to the seizures, paralysis, motor issues and physical sensations (tingling, numbness) you are immediately referred to a neurologist. A physical, neurologic, psychiatric exams, EEG (overnight and/or a 4-7 day video EEG) along with imaging (MRI, CT, and if lucky a functional MRI (FMRI) will be ordered. Mass General has uncovered pathways in the brains white matter that may be altered in patients with FND. Not all doctors are willing or even capable of doing this test. It also may take a great deal of time to get an accurate diagnosis. Because this disorder doesn't clearly fit into one specialty, you are often passed to one doctor to the next. Another reasoning for the extended diagnosis time is due to the fact that many of your symptoms can be seen in other disorders. All possible disorders must be looked at via all the specialties. When my brain/eyes weren't burning and I had a break from seizures I would spend my time researching my symptoms. Even my friends were researching and helping to find doctors. Once you find your team, you hold on tight and don't look back. I was lucky to find my team within the first several months. My Neurologist actually referred me to a particular psychologist she knew. He was a movement specialist along with being a psychologist. He opened my eyes at how my childhood and also my medical issues that started in High School affected my well being. Although, I never seemed too bothered by those issues. Deep down in my subconscious the issues existed. FND symptoms can be linked to emotional and medical stress. That stress can increase your symptoms. He worked on DBT and CBT with me. Over time I learned a lot of various grounding, coping and distraction exercises. Sometimes, destressing yourself can also help. I really saw improvements with my emotional well being once I made consistent physical improvements, had any break from seizures and also removing or limiting time spent with toxic people in my life. I feel like I always must add a paragraph like this one in all my writings. Each time, I get new readers from across the world. I want to educate a little each time and hope it helps at least one person.
It's been a year since my last writing. Perhaps I didn't write due to not being where I wanted to be in life. I am aware that I'm not the greatest writer. I know I make many grammar mistakes. But, this is me. Just me trying to share with the world my struggles, improvements and hope. Maybe I'm right where I need to be in life. I have been able to go to concerts again, but still need to wear earplugs. I have begun to run and even completed several 5k's. I am no longer seeing a psychologist and have been taken off many of my meds. With all of that I continue to strive and improve. I feel like I can officially say I'm in remission. With that being said, I still must always be cautious of what I do and who I am around. Symptoms can quickly present themselves again.
Although, I'm still technically on disability I have been able to maintain a part time job for over a year now. At first, I felt like my hands and brain just weren't in sync. But, as time went on my pace has improved. I'm a quiet worker and not the fastest worker, but I'm reliable and consistent. I work quietly mainly because I still struggle with completing tasks and holding a conversation. In addition to working there I also added more to my schedule. Over the summer, I started substituting at the school I worked at. It's a private school for special needs children. I was beyond excited that they were even willing to have me start back. I was only there once a week. My goal has always been about taking baby steps. I figured, I would see how I do once a week over the summer and then increase the time in September. My summer went well. I substituted as a one-to one in various rooms. I would look forward to each day and wonder who I would be paired with that day. My confidence grew with each day. It went so well that I was asked to come back in September as a one-to-one for a teenager two times a week. I thought having the consistency would be beneficial not only for myself but also for her. However, I was quickly aware that I had some hurdles that I would have to get pass. At the initial in-service, I was told about my student and the students medical and physical needs in the classroom. I went home and felt worried and unsure if I made the right decision. I taught for 20 years. I never once thought am I making a mistake. However, I'm at the point of being unsure and worried. I went in and immediately spoke to the class teacher and the staff. The student I was assigned has frequent seizures in school. Not only does she have seizures but multiple kids in the room also do. Since my diagnosis I have not had to be face to face with another person having a seizure. Of course I had many students during my teaching years that suffered from seizures. We all comforted them and treated them as needed. But, this will be the ultimate test for me. I thought if I could handle this then I'll be able to do this job. As mentioned before, your emotions definitely play a role with FND symptoms.
Although I had apprehension I had a great first day. I quickly felt connected to the student and she seemed to respond well to my presence. During the first week of work I started noticing some things occurring daily. My limbs would get spasms or sudden bolts. With my other job, I kept feeling faint and had to excuse myself for over an hour. Another day I had to go outside to get fresh air. I was feeling more flustered and anxious. The third and last week at school, my student who is wheelchair bound is able to stand when fully supported. So upon arrival, I assisted her to standing and we were looking out the window. As she stood she had a drop seizure. This was her first seizure on a day I worked. Because I was already supporting her weight, I was easily able to guide her down to the ground. She quickly came to. I thought "well that wasn't too bad, I got this". After lunch, I was noticing that I was having trouble breathing and kept breaking out in a sweat. The whole school was under covid protocols and all staff had to wear a mask. With such a medically frail school, we take spreading germs very seriously. At first, I thought it was due to the heavy mask. But then started to get confused and disoriented. I remember telling the teacher that I'm feeling off and then stated that I was taking the student to the bathroom. I look back at it now and I know that if I felt off I should not have offered to bring her. But, when I'm in that state I'm just not thinking clearly. As I'm walking out I ripped the mask off and said "I can't wear this" and began pushing the wheelchair. I was stopped by a therapist and asked to sit down. I refused to sit down and tried walking to the back of the room. However, tremors began and I was very off balanced. I do recall being very determined to get to the back of the room. I was guided to the back and she did a wonderful job helping me work through this. I tried splashing water on my face to help ground myself. I think I had a mini panic attack that day. On a positive note, if that happened 2 years ago having tremors and being so off balanced would have triggered a seizure for sure. But, this time I was able to get through it with time. Then two days later, I had my last day at the school. It began as any other day. Then my student had a very long and violent looking seizure. I began to talk to her to reassure her that she will be okay. The staff came to help me protect her. I kept having to look away. I was holding in tears. As I'm writing this now the tears have again formed in my eyes. The staff saw my reaction and they continued to care for her. I then tried to take over with teaching the lesson with the other students. I kept looking then looking away while the tears are just pouring out. Luckily, I had lunch soon after this incident which the student recovered. Instead of eating lunch I felt nauseous and saddened. I knew by how my body has been responding over the last 3 weeks and how I reacted to her seizure that this isn't going to work. During lunch, I spoke to the supervisor and expressed my concerns. As a teacher I understand that I am now leaving that class short handed and getting a sub is difficult. My guilt took over but deep down I knew that I couldn't let that guilt win. I knew that just in these short weeks I began regressing. My progress and health needs to trump all of the guilt. The supervisor completely understood and we went to talk to the class. That was my last day. I lasted 3 weeks.
Although it was a painful decision I do know that I made the correct choice. I felt and still feel like a failure. I wanted this to work so badly. What am I going to do with my life? How long will I be in limbo? Perhaps there is something more for me to do? Maybe this is a chance for me to do something completely different. We shall see where my baby steps take me
