Last updated: November 2023
Getting to know your body is very important when living with a chronic illness like NMOSD (neuromyelitis optica spectrum disorder). With the years I have living with NMOSD I’ve learned through my experience to read my body.
When to know when I'm having symptoms due to the weather or an actual virus brewing inside of me. My body transforms. Incredible all the signs I've gotten to learn about myself.
New NMOSD symptoms
In the beginning of my journey, I use to freak out from any little change I would feel in my body. I would be in the emergency of my local hospital within hours. I was constantly worrying that I would be developing a new lesion and that this would be the reason for a new symptom. But with time I came to realize that symptoms come and go like the seasons. That I didn’t have to freak out with intrusive thoughts of new lesions every time I experience a new symptom.
Whether I’m getting a cold, UTI (urinary tract infection), or an ingrown nail, I always get a warning from my body. For me, a warning that something is coming looks and feels something like this:
For me, it always starts with tone and spasticity in my body gets excruciating. My lower limbs become incredibly stiff and I’m unable to straighten my legs. My legs get stuck in a V shape form, bent at the knee unable to straighten them. My torso gets super tight, and it feels like my abdominal are getting define in a violent way.
The MS (multiple sclerosis) hug isn’t even relevant when it comes to a body warning. My back feels so hard all the way to my neck on the bottom part of my skull. My hands scrunch up into fist. If I have long nails at the time, they painfully dig into my skin. My fist must be unfolded finger by finger and held open.
This is all so painful! Usually, a person next to me can physically see the muscle tightening under my skin.
I describe this as my Hulk formation (boy mom thoughts). This is when my body knows something bad is intruding my body and is reacting before my knowledge that I’m getting sick. My muscles start forming under my skin.
Visible to any to witness for anyone looking at me, or anyone helping me physically. My transfers from seat to wheelchair become more difficult and I get as heavy as a mountain.
With experience comes knowledge
With experience now I don’t overreact at the sight of a new sensation or jerky movement. I first pause and checkout my environment. I now notice that when the seasons change, like from summer to fall, my body tends to react to those changes. Or when my children are sick from a bug, they’ve brought home from school. Or when I don’t drink enough water and become dehydrated. Or when I don’t use the bathroom correctly with a disposable catheter and get a UTI. Even when I’m about to get my menstrual period by body gets out whack.
I can go on and on with plenty of examples of reasons why I’d get sick. But the important part of all of this is that I’ve learned to identify when something is not right with my body.
When I was newly diagnosed everything was abnormally scary. I felt like my world was crumbling down. But like I've said above, with time comes experience. You too will become an expert on your body's reaction to unusual things.
Typically, how much time passes between attacks for you?