Living with Neuromyelitis Optica (NMO)
As someone living with Neuromyelitis Optica (NMO), a rare autoimmune disorder that affects the spinal cord and optic nerves, I hate being disabled.
Every day feels like an uphill battle as I struggle to perform simple tasks that others take for granted.
From going to the bathroom to taking a shower, even getting out of bed in the morning, every task feels like an obstacle that I have to overcome.
The Limitations of NMO
Living with NMO has made me realize just how much we take our mobility for granted. My mobility is severely limited, and I rely on walking devices to move around.
Even the most basic tasks, such as going to the grocery store or visiting a friend’s house, require careful planning and preparation.
I have to think about accessibility, transportation, and the amount of energy I have to expend just to get there.
NMO has also affected my vision. I lost the use of my right eye and I suffer from optic neuritis in my left eye, which causes blurred vision, double vision, and even complete blindness.
I have to be careful not to strain my eyes too much and to take regular breaks to rest them.
The Emotional Toll of Being Disabled at My Prime
Living with a disability can be emotionally draining. I hate being dependent on others for basic tasks, and I often feel like a burden on my loved ones.
I sometimes feel like I am not contributing enough to society and that my life has little value. These feelings of worthlessness and inadequacy can be overwhelming at times, and it can be challenging to maintain a positive outlook.
The Frustration of Not Being Able to Do Things because of my Disability
One of the most frustrating things about living with a disability is not being able to do things that others take for granted.
I hate not being able to go for a drive and playing my music or going to the park with my kids or to run around with my friends. I hate not being able to participate in sports or to dance at a party.
These are all things that I used to enjoy before I started to battle Neuromyelitis Optica, and it’s frustrating to know that I may never be able to do them again.
Coping Strategies That I Found Helpful with My Disability
Living with NMO is not easy, but I have found several coping strategies that help me to manage my disability.
Acceptance
The first step in coping with a disability is to realize that it is there. It’s essential to come to terms with the fact that I have limitations and that I might never be able to do certain things.
Acceptance doesn’t mean giving up, but rather recognizing what I can and cannot do and finding ways to work within those limitations.
Self-Care
Self-care is crucial when living with a disability. I need to take care of my physical and emotional well-being, which means getting enough rest, eating a healthy diet, and staying active.
I also need to take time for myself to do things that I enjoy, such as reading a book or listening to music.
Support
Having a support system is essential when living with a disability. I am fortunate to have a loving husband and supportive family, as well as friends who are always there for me.
It’s important to surround myself with people who lift me up and support me in my journey.
Advocacy
Advocacy is also crucial when living with a disability. I advocate for myself by speaking up about my needs and advocating for accessibility and inclusion.
It’s important to raise awareness about disabilities and to fight for equal rights and opportunities for all people with disabilities. That’s why I started this blog.
Adaptive Equipment and Assistive Technology
Using adaptive equipment and assistive technology has helped me perform daily activities more easily.
For example, I use walking aids and sometimes I need a wheelchair to move around, and I’m grateful that I have a big enough vehicle for my wheelchair to transport me to places.
I also use assistive apps like speech-to-text software to type and communicate when NMO causes my tongue to go numb.
Therapy and Counseling
Living with a disability can be emotionally challenging, and therapy and counseling can help me manage my emotions and mental health.
I can talk to a therapist about my feelings of frustration, anxiety, and depression, and learn coping skills to help me manage stress.
Pursuing My Passions
While I may not be able to participate in certain activities, I can still pursue my passions and find ways to engage in activities that bring me joy.
For example, I enjoy writing and have started a blog about my experiences living with NMO. I also enjoy listening to worship music and have found ways to praise God even during these hard times.
How I became OK with being Disabled
I Gave Myself Time to Grieve
When I first became disabled, I was overwhelmed with negative emotions. I felt like my life was over and I didn’t know how to move forward. So, I gave myself time to grieve. I allowed myself to feel all the emotions that came with my new reality. It was important for me to acknowledge and process those feelings before I could begin to move on.
I Learned to Accept My Disability
After going through the grieving process, I learned to accept my disability. It was a long and difficult journey, but it was necessary for me to find peace and happiness in my new life. I had to let go of my old expectations and learn to embrace my new reality.
I Minimize the Disability’s Impact on My Day-to-Day Life
While my disability certainly has limitations, I try to minimize its impact on my day-to-day life as much as possible. This means finding creative solutions to problems and adapting to my environment. For example, I use assistive technology to make tasks easier and more accessible.
I Started to Focus on the Present
When I was first disabled, I spent a lot of time dwelling on the past and worrying about the future. But I learned that the only way to find peace and happiness was to focus on the present moment. I try to stay present and mindful, enjoying the little things in life and finding joy in the moment.
I Found Hobbies and Interests That Made Me Feel Fulfilled
One of the keys to happiness as a disabled person is finding hobbies and interests that bring fulfillment. For me, this meant exploring new creative outlets like writing and painting. I also found joy in outdoor activities like birdwatching and gardening.
I Asked for Help
Asking for help can be difficult, but it’s essential for a disabled person. I have learned to be comfortable asking for help when I need it, whether it’s from family, friends, or professionals. Accepting help doesn’t make me weak, but rather it helps me to live my best life.
I Take Care of My Mind and Body
Lastly, taking care of my mind and body is crucial for living a happy and fulfilling life as a disabled person. This means taking care of my physical health through exercise and a healthy diet, as well as taking care of my mental health through therapy and self-care activities.
Conclusion
Living with Neuromyelitis Optica has its challenges, and I hate being disabled.
However, I have found ways to cope and manage my disability. Acceptance, self-care, support, advocacy, adaptive equipment and assistive technology, therapy and counseling, and pursuing my passions are all essential for living a fulfilling life with a disability.
Despite the obstacles that I face, I am determined to live my life to the fullest and not let my disability define me.
And I believe you can do the same as well.