A person struggles up a steep outdoor staircase, dragging a heavy, overstuffed suitcase tied to their ankle.

My First Trip After My NMO Attack

Last updated: June 2022

I'd spent 7 months recovering from my first attack. It’s been two months since I've been off steroids and I had finally gained the tiniest bit of confidence back. I had scheduled a trip to go down to Birmingham for the annual NMO patient day. I knew this would be great because it would be the first time I would meet other people like me in person.

Preparing to travel after my NMO diagnosis

This time around, packing was unusual for me, I had to carry painkillers and other medication with me to survive the trip. I never had to do this before. I had to pack things like comfortable shoes and clothes just in case I began to flare on my trip.

My leg started to hurt in the car

My cousin and I were going to drive down to Birmingham from Glasgow, which takes around four and a half hours. We started the journey around 9:00 am. The journey itself was tiring. The weather was hot, and I have heat sensitivity issues which make my neuropathic itch flare. Two hours in, my leg started to hurt because of I was sitting relatively uncomfortably and without moving, so we took a break. I was also afraid I would have to take multiple bathroom breaks but luckily I didn't.

It was so hot

When we finally arrived, I laid on the hotel bed for a while because, even though I was just sitting throughout the journey, I felt shattered. After resting, we went to the Bullring Shopping Centre, which is massive, and after visiting two stores I got tired so we decided to call it a day. The hotel room was extremely hot, and the AC was not working which meant, again, my itch was flaring.

I swelled up

The next day would be a long day as we had several things planned. I hadn't been this active since before my attack, and it certainly did not feel the same. The heat made my hands and feet swollen, which was extremely uncomfortable. We did around 12,000 steps that day and every time I sat, I felt stiff and as if I couldn't get up again. My knees have suffered because of prednisolone, and I had to take extra strong painkillers to get me through the night.

Bladder issues on the road

The last day that we were in Birmingham was the NMO patient day. I got to meet other people with NMOSD, learn information about our disease and about new treatment plans. Unfortunately, the chairs were uncomfortable, and sitting for long hours once again made my leg hurt. I had to leave early as I had a long journey ahead. On the way back to Glasgow, we went to eat and I took a bathroom break. After taking a bathroom break I realized I had a UTI. It was so painful and I still had four hours until I reached home.

It took me time to recover

Overall, I enjoyed my first trip after my attack but things weren't the same anymore. I wasn't able to do as many things as I wanted to do because I was always in some type of pain and tired. After the trip, it took me some time to recover. I wish I wasn't so uncomfortable in my own body and after this trip it sinked in, that if I ever wanted a break, I wouldn't be able to ever get a break from my new, damaged body.

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