My First Trip After My NMO Attack

By Haleemah Sarwar

3 min read

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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RichardS Member
Hi, I have NMOSD, and the fatigue and brsin fog that comes with it. Mine started when I was 14, and got bad at as ge 18, and has been the same since then. I was able to go to university, then law school and get a J.D. Some rricks I learned to fight the fof and fatigue, and help remember things better while studying, were pretty basic, but seemed ro work. 1. Get lots if good sleep. I can't learn new rhings while rired, so ve rested before tou do your readings. Take a 20-30 minute nap if reading makes you sleepy, then continue after waking. I used to fo to bed early and wake up at 3:00AM to do my readings before law classes. 2. Take nites whule reading. Write short notes off your thiughts on key points in the text, the rhings you want to remember later. Hifhlight asnd underline the important parts so tou can flip vack ro rhem a few weeks or few ninths later. I used to write notes s in the margins. When reviewing for exams I'd just flip through rhe material and only reread what I highlighted and my margin notes. It's the activity itself of underlining important passages asnd majung nites that plants rhese things in your memory. Passive reading is monotonous and makes me sleepy, active note taking requires thinking and writing, which builds memories. Months later you'll think of the part in rhe readings you want to remember, and you'll actually visualize the page where you read it "it's on the right hand page, bottom third if the page, wirh green hilighter and the key line underlined in hlue ink, with ny nites written on the bottom if the oage". Sounds silly but it works. 3. Eat well, choose simple, nutritious food foods, basic proteins, carbs, fruits and vegetables. Avoid processed foods. 4.Elininiate or minumize time wasting TV, internet and social media use. Reduce exposure to people that cause stress, drama, arguments, people that ypset you or are just negative and in general. 5. Relax by the doing positive things you enjoy, exercising to hanging out with good, positive friends and family, go to the movies, restaurants, etc. 5. Chill, noone remembers what they h as d for lunch three days ago, or everything they read in a textbook three hours ago - that's why we make short notes.your dad has clear memories from decades ago because he was actively living rhose moments, not reading them, and they meant something to him, so he remembers them. You'll have those memories too. In reality, most if what we read in law school is obly useful for getting through the course and final exam. If tou retain just the key concepts aftter that, you'll be fine. What law school, and paralegal studies, really teach you is HOW to think about legal issues and how to identify key issues from useless information, and how to research to find the right solutions. You are learning how to process information and how to find the correct additional information you need ( a case decision, section of legislation or administrative process). The information you learn now is less important than the process of learning and thinking about legal issues. I'm taking a drug called Fampyra for brain fog and fatigue. It's mostly given tovpeople eith MS but it helps NMO and NMOSD too. It helps prevent nerve signals from leaking through damaged myelin. It helps speed up walking a bit too. I'm in Canada, I think it's called Ampyra in the US. I hope this helps, sorry to bore everyone else who's not dealing with studying while having NMO orNMOSD. 
1. Haleemah Sarwar Moderator & Contributor
 Hi Richard, I can’t explain to you how helpful your tips really are. Thank you so much💚 I appreciate you taking the time out to write all these helpful tips for me and others struggling with brain fog. Also knowing that you’ve gotten through law school has given me some hope too. I’m in the UK but I might ask my neuro about the drug you’re taking for brain fog. Once again, thank you so much & I hope you’re doing well! 💚💚
RichardS Member
Hi Haleemah, glad to help, let me know if you have any questions. The Fampyra I'm taking is made by Biogen. The active ingredient is fampridine, sometimes called ampridine. Fampridine was originally used as a bird pesticide in the 1950s. It would excite the birds" nervous systems, causing them to fly wildly untill they either had a heart attack or fell from the sky due to exhaustion and die on impact. Its a calcium blocker (or potassium blocker to I can't recall which) and prevents leakage of nerve signals through damaged myelin. It has a risk of causing seizures or death if not taken properly, but Ive been taking it daily for four years now with zero problems. About law school, I'm also visually impaired (about 70% of my vision is gone) and paralyzed on The left side, all from NMOSD, long before i started university and then law school. So, If I can do it, you can too. Here's sime unsolicited advice about getting an educ as tion: Study what you're interested in, art, philosophy, literature, physics, or whatever makes you happy and engaged. Don't be afraid to switch programs from one subject area to another if your interests change, or you realize you don't like something all that much after you get deeper into it. Give yourself the freedom to fail and start over again 6 that's what will make you fearless. Lots of people drop out and retry again, and they don't have a serious rare disease to deal with. I had to quit, take a year off to get better and restart again, a couple of times. All rhe best, Richard 
1. Haleemah Sarwar Moderator & Contributor
 Thanks a lot Richard💚