When I was in the midst of severe FND (Functional Neurological Disorder) symptoms, it felt like my world had crumbled. I had lost a lot of my independence, and my life had become a constant struggle. I had a family caregiver with me round the clock to ensure I was safe and could get support when needed. Before we knew more about psychogenic non-epileptic seizures, we were all frightened and unsure of what to expect.
The Struggle for Independence with FND
Each time I felt one of these seizures starting, I needed to get to the ground or a couch to avoid falls. If someone was in another room, I had to either call out (if I could) or call them on the phone using speed dial. Doors were never locked, and there were lots of things I couldn't do for fear of an episode coming on and getting hurt.
I felt my frustration growing slowly into resentment, which conflicted with my appreciation and gratitude. I was angry at my inabilities, angry at the illness for taking away so much from me, and angry for not being able to have privacy. I felt the frustration begin to focus on my caregivers.
One thing I knew was that when I feel frustrated, it's because I feel stuck or stagnant. Something had to change. We decided that we needed a new approach.
The Journey Towards Independence
As I had not had any major injuries from the seizures, I began spending time alone while seated in the living room or on the patio. Then I began not calling when a seizure came on but had someone check on me once in a while. Over time, we continued communicating adjustments, and very slowly, I regained my confidence and ease to be able to move freely about my day.
Accessibility tools and open communication were major factors, but so was learning what my new needs were and asserting them. It was never a linear path, but rather filled with tweaks and adjustments. I continue it to this day as my body continues to change.
Embracing Change and New Needs
Many factors in life can impact our independence, privacy, and sense of identity. One thing that kept me moving was learning what exactly I was looking to feel again, and being open to it looking different than before.
In my journey with FND, one of the first and most crucial steps toward regaining my independence was acknowledging the frustration and anger I felt. It's natural to feel this way when you're faced with limitations you never expected. However, I realized that dwelling on these negative emotions wouldn't help me progress. I needed to channel that frustration into finding solutions.
The support of my caregivers was invaluable during this period. We had open and honest conversations about my needs and what I could do to regain some autonomy. It was essential for them to understand that while I appreciated their help, I also needed space to grow and regain some control over my life.
The Power of Communication
Open communication became the cornerstone of my journey. We discussed my triggers, warning signs of an impending episode, and strategies to minimize their impact. This not only gave me a sense of control but also eased the burden on my caregivers. They could trust that I would communicate my needs when necessary.
One significant change was gradually reducing my reliance on immediate assistance during seizures. Instead of urgently calling for help, I started to focus on self-care during these episodes. This meant finding a safe place to sit or lie down, ensuring my surroundings were free from potential hazards, and simply waiting for the episode to pass.
This transition was not easy, and it required trust and patience from both me and my caregivers. They had to resist the urge to rush to my aid, and I had to trust that they would check on me periodically. Over time, this approach allowed me to regain a sense of independence during these challenging moments.
Embracing Adaptability
One lesson I've learned on this journey is the importance of adaptability. FND is a condition that can change over time, and what works one day may not work the next. This means being open to adjustments and being willing to try new strategies when old ones no longer suffice.
Additionally, I've come to accept that my sense of independence may look different than it did before FND entered my life. It's about finding new ways to experience autonomy and freedom within the boundaries set by my condition. This mindset shift has been crucial in maintaining my emotional strength and hope.
The Role of Accessibility Tools
Accessibility tools have played a significant role in regaining my independence. These tools are designed to assist individuals with various disabilities in performing daily tasks and activities. While FND presents unique challenges, many of these tools can be adapted to provide much-needed support.
For example, mobility aids such as walkers or canes can offer stability during episodes, reducing the risk of falls. Voice-activated devices can provide a means of communication when physical movement is limited. These tools not only enhance safety but also contribute to a sense of self-sufficiency.
Finding Support in Community
Throughout my journey, I've found incredible support in the FND community. Connecting with others who share similar experiences has been both empowering and comforting. It's a reminder that I'm not alone in this journey, and there are people who understand the unique challenges I face.
Online forums, support groups, and advocacy organizations have been invaluable resources. They offer a platform to share insights, exchange coping strategies, and offer emotional support. Being part of this community has helped me maintain a positive outlook and discover new ways to embrace life with FND.
Cultivating Emotional Strength
Maintaining emotional strength when living with FND is an ongoing process. It involves acknowledging the emotional rollercoaster that often accompanies chronic illness. There will be moments of frustration, sadness, and even anger. It's essential to allow yourself to feel these emotions without judgment.
However, it's equally important not to let these emotions define your journey. While it's okay to have difficult days, it's crucial to focus on the progress you've made and the possibilities that lie ahead. Surrounding yourself with a supportive network of friends, family, and healthcare professionals can provide the emotional scaffolding needed to weather these storms.
A Call to Action: Embracing Hope
To those who find themselves on a similar path, battling FND or any chronic condition that challenges your independence, I want to offer a message of hope. Remember that regaining independence is not a sprint but a marathon. It requires patience, adaptability, and a resilient spirit.
Reach out to your support network, communicate your needs openly, and be willing to explore new strategies. Embrace the assistive tools and resources available to you, and don't hesitate to seek guidance from the FND community. Most importantly, be kind to yourself. Acknowledge your progress, no matter how small, and celebrate your victories.
In the darkest moments of my FND journey, I never imagined that I would regain a sense of independence and control over my life. But by persevering, seeking support, and staying open to change, I've been able to carve out a fulfilling and meaningful life despite the challenges. I believe that you can too.
So, if you're feeling trapped by the limitations of your condition, know that there is hope. Embrace the journey, and with time and determination, you may discover a newfound sense of independence and purpose that transcends the boundaries of your condition. Your story is still being written, and it's filled with potential and resilience.
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