Battling My First Winter With NMO
I live in Scotland, and we have bad weather in general. Still, this has been one of the coldest winters we have had in a long time. I’m a law student, meaning I must travel into the main city center to get to my university around three or four times a week. I need to take a bus from my area, which takes around 40 minutes to get to my university on normal days. But with NMOSD, winter has struck, and this journey has become ten times harder.
My first winter with NMO
It’s the first winter I’ve had to travel outside with NMOSD. We were in lockdown for a long time, and last year, I was in college, but everything was online because I was recovering from my attack.
The cold triggers my NMO symptoms!
The piercing cold feeling in my hands and feet caused my neuropathic itch to flare. Because when I went into a closed space, my hands would try to warm up quickly, which would trigger it.
I've been in so much pain...
The worst pain I have felt this winter is in my arms and left leg. I have already spoken about the muscle damage I’ve had in my left leg due to my attack.
But the pain I’ve felt these past few weeks has been excruciating, and even painkillers fail to give me relief. It feels like the pain is starting from my muscles and spreading to my bones. Once it starts, it’s so difficult to get rid of.
Moving from one place to another
I’m extra cautious with walking in this cold weather with my NMO. If I get an injury, it’ll take me longer to heal from it because of the immunosuppressant I’m on (rituximab).
With the traveling, I’m also really exhausted. Buses are getting canceled because of the weather, which means I’ve had to wait outside in the cold for over 40 minutes. I’ve also had to travel and balance studying with the gym.
I’ve also had a pretty hard time with my fatigue. I had to take a break from the gym for two weeks because I had to prioritize my classes and studying schedule due to exams.
Give me a break!
If that wasn’t enough, the freezing temperatures froze the water in our pipes, and we were without water for around five days. That also means the heating has been on and off. I haven’t been able to catch a break for the past month, and I’m really hoping this weather subsides and it gets better.
Now, I'm trying to wear multiple layers of clothing. I wear t-shirts under jumpers, double layers of socks, and leggings underneath my sweatpants to hopefully prevent further flares. I also bought a warmer jacket. But it’s hard to keep a balance from being too cold or too warm.
Since the heat also triggers my NMO symptoms, it’s been difficult. The combination of cold weather with NMO and exams has been stressful, and I’m so glad I had two weeks to relax at home and do nothing.
Were you misdiagnosed, prior to being diagnosed with NMOSD?