Balancing the many roles each of us plays in our lives and the lives of others can be complicated. Neuromyelitis optica spectrum disorder (NMO) can make these roles more challenging. Identifying essential needs can help those with NMO decide what they can do independently and when they may need help.1
Daily activity hurdles
Carrying out your daily activities may be difficult at times. These challenges may result from NMO itself or other causes, including:1
- Fatigue
- Pain
- Weakness
NMO may lead to mental problems, including stress and depression. These may also make performing your daily activities a struggle.2
Roles and your identity
Our roles in life make us who we are. Roles add to our identity. These roles are many, varied, and endless. Roles you have change over time, including parent, child, caregiver, friend, and others.1
It is no surprise that NMO can and does impair or halt at least 1 of these roles for some people. It is important to remember that most of these setbacks are temporary. While it may feel like 2 steps forward and 1 step back, you can find ways to move forward. With time and some adjustments, you and your family can find ways to resume those things that hold the most meaning in your life. Creative solutions can lead to strong bonds that create lasting memories along the way.1
Decide what takes priority
It may be helpful for you to make a list of the things you do in a 24-hour period. Start with the moment you wake up in the morning and keep going until you fall to sleep at night. Include any activities during the night if you wake up. Make note of whether you need help to do the activity or can do it on your own.1
From your list, decide which activities take priority. Priority activities are the most needed, useful, or desired things you do during your day. Is it a task you need to do on your own? Saving your energy for the most important activities might help you in your daily routine. Sometimes you can ask yourself, “Is there a way of doing this differently?” You may be surprised at the answer. Simplify when you can.1
Our daily lives, roles, and schedules all look different. Some people live with family, while others live alone. Your life is unique, and you have your own hurdles and solutions. Your list can help give you an idea of which activities are essential and desirable, and which should take priority in your life.1
Adapting to change
Overcoming challenges from NMO will involve adapting as best as you can. Look at different ways to achieve your goals. For some, adapting to change might look like changing the time of day when you perform an activity. If you have normally walked your dog in the evening, you might move this to the morning, when you have more energy.1
Change for others might be needing special equipment to help with certain tasks. If grocery shopping wears you out, you can adapt by using a motorized shopping cart to help conserve your energy.1
It might take time to find what works best for you. Try different solutions. There is a wide range of products available for those with NMO. Talk to your doctor about your needs. Listening to your body closely, making some changes to your priorities, and simplifying your routine can help you manage your life while living with NMO.1