Getting One Step Ahead of NMO
Last updated: March 2023
A word of advice: be prepared for anything when living with NMO.
As scary as this may sound, the fact is that there's simply not enough information to know everything about this disease. I found while living with NMO, I have to be one step ahead at all times.
Expecting the unexpected - preventative treatment for NMO
All too often, preventative treatment for NMO can fail after any period of time for reasons unknown. It is important to be willing to try different options in the event that your current treatment plan is not working for you.
My confusing NMO flares
There is a difference between an NMO flare, relapse or attack, and a pseudo-flare. When I've had an exacerbation of my current symptoms, it turned out I was having a pseudo flare, something that is very common with this disease. Depending on the level of severity, it can almost feel like you're having an attack (but you might not be).
I must tell you, dealing with NMO pseudo flares is no walk in the park. But it can be managed.
I found out as long as I didn't have any new symptoms for more than 24 hours, I could potentially manage this outside of an ER setting with the help of my doctor.
Work and disability
I remember when I was initially diagnosed with NMO. I had pretty bad attack at the beginning of the COVID crisis which eventually led to my diagnosis.
I was devastated to find out that the physical state I was in would likely be permanent. This caused a serious disrupt within my career.
I loved my job, but NMO forced a change
Aside from my family, my career was everything to me. NMO is no easy disease to manage. Depending on your level of disability, you must be prepared to make the necessary adjustments with your job, if you have one.
In my case, I was forced to make some drastic changes. Eventually, these led to the unfortunate need to end my career.
Not everyone suffers this fate. The most important factor is learning how to balance living a decent quality of life while managing your disability.
Making the best out of my life
The reality? Nothing will ever be the same after your NMO diagnosis. This is simply a hard truth for everyone living with this disease. But it doesn't mean your life stops there!
NMO and the "new normal"
We always talk about finding a "new normal." Quite frankly, when you find that balance, it's liberating! I thought my life was OVER after I heard my doctor tell me those infamous, unforgettable words:
"You have a rare disease called Neuromyelitis Optica. It is incurable."
It took some time, but I finally came to terms with NMO. I learned how to live with it. I saw a new side of myself that I never knew existed. I am grateful for the person I've become today.
Staying positive and proud!
I've accomplished more than I've ever thought I could. As crazy as it may seem, I don't think any of these things would have happened if NMO had not become a factor in my life.
Don't get me wrong, I can do without it! But the reality is, I have NMO, no doubt about it. This disease does not define me, and I have created a new normal. For this, I am proud.
Typically, how much time passes between attacks for you?