portrait of a woman inside of a clock what is life like with NMO

My NMO Anniversary

Last updated: November 2022

A year filled with constant ups and downs. Learning to live life as someone with a long-term illness wasn’t straightforward.

When I first received the news that I had Neuromyelitis Optica Spectrum Disorder and my attack was not just a ‘one-time thing’ which the neurologists had made it out to be beforehand, it felt like my world had turned upside down and nothing could make it better. No words, support, or sympathy from others could make the empty feeling inside me go away. Everyone was telling me how sorry they were about what had happened, how things were going to get better, and that I was strong enough to get over these obstacles life had thrown at me so unexpectedly. I was going to be stuck with this debilitating disease forever. I would be living a life of pain and discomfort starting at just nineteen years old. There was absolutely no way out.

How did my life change after my NMO diagnosis?

I had physiotherapists visiting me at my home every week, a handrail was put in the garden to help me walk up the stairs as I had little to no balance, shower chairs were provided as I could barely stand for a minute let alone have a full shower while standing. Since I was taking steroids on a daily basis, it was crucial that I didn’t catch anything I wouldn’t be able to fight off. Diet changes were implemented as certain foods would trigger my symptoms. This was not the life I ever imagined for myself, and I certainly did not think it would be that difficult to simply exist.

The impacts of isolation

COVID-19 meant I had to isolate. I was in the house 24/7, just me and my thoughts. It wasn't easy, but as time went on, it became my norm. I lost the ability to socialize with people and could barely keep a conversation going without feeling bored or uncomfortable.

I always had the mentality that things would get better themselves and I would not need any support from anything or anyone. But, mentally, I was at my worst, and I just could not see the light at the end of the tunnel, no matter how hard I tried to reach the end of it. Things would keep popping up out of nowhere, taking me back to where I first started.

Taking control of my mental health

I finally decided to do something about my mental health. No one could get me out of that negative headspace but myself, so I began taking anti-depressants for the depression and anxiety I was suffering from. It worked wonders, the first few weeks were hard, but after the initial side effects subsided, I started to feel better. The overthinking became less frequent, which meant fewer sleepless nights spent thinking of the future.

Finding my own path of healing

I spent months trying to gain my body strength back so I would be able to do the things I could do before my attack. I went on daily walks, starting from only a few minutes and gradually increasing the time once I was able to do so comfortably. I took supplements like lion's mane, vitamin B12, fish oil, Zinc, and many more to provide my body the nutrients it needed to recover. I quite literally started from the bottom and worked so hard to get to the place I’m in right now. It took a while to find the right painkillers for me. I went through 3/4 different painkillers for nerve pain until I felt a difference. It was a process of trial and error, but I finally found things that worked for me.

I started rituximab a few months after my attack and was finally able to stop taking prednisone. The side effects of the steroids were horrible. There was insomnia, bone pain, weight gain, mood swings, and acne. It completely destroyed my confidence. I felt ugly and horrible. I couldn’t even look at myself in the mirror without feeling upset. But that was when I realized not everything is about your appearance. I became a humble and happier person, and my personality totally changed. I was much more grateful for the little things in life.

Getting my coursework back on track

Things take time to settle but eventually, it works out. I missed out on a lot of coursework from my last year of college which seemed like a hassle to catch up on since I didn’t have the ability to retain information like I did pre-NMOSD. However, I stuck to it and caught up on everything and achieved all As, a paralegal degree, and a place in one of the best universities in Scotland.

Finding gratitude for my independence

Being able to do things on my own was something I cherished so deeply after the attack. It’s something you would overlook if you were still able-bodied as you’ve never been in a situation where you’ve lost the ability to walk, talk, do anything on your own.

I couldn't do this without my support system

I realized who the truly genuine people in my life were and who weren’t. I cherished my loved ones more than I ever have in my life. You tend to take people for granted when they’re always around you. My family was there for me from the beginning, regardless of how I acted or looked. I sometimes took my frustration out on them because I had no outlet, but they forgave me straight away, knowing why I was acting like that. My parents did everything for me, and my dad spent his nights researching my disease and how to help me recover. He bought me different types of books, food, and supplements. He forgot about his own problems and made me his top priority. It took a big toll on his health, too, he was mentally drained, and it was physically showing. Yet he still had hope I would recover. My mum quit her well-paid job for almost a year just to be around me 24/7, so I didn’t have to do anything on my own. She was and will always be my rock, the "bestest" friend anyone could ask for. She was going through as much as I was at the time I had my attack, her own health problems, and her dad passing away, yet she didn’t let me feel like a burden, not even on the days she didn’t feel her best.

Not all days are good days

Physically, I’m still not where I want to be. I’m still heavier than pre-NMOSD because of the steroids but I’ve managed to drop some of the weight off. The steroids took a toll on my joints, but I can walk longer than I could in October 2021. I try to go on daily walks and get at least 6,000 steps in. Some days my fatigue and pain will be excruciating, and some days it will be bearable. It just depends. If I’m having a bad day, I make sure to relax. I still overdo it sometimes and pay for it later on. But it’s okay. Life is filled with obstacles you have to overcome.

My new normal

My life is much different than it was just over a year ago, but I’ve adapted. At first, it was hard to accept. Even now, some days, I will cry about how much I miss being healthy. It isn’t in our control. This is my new normal, and I can't do anything about it. This disease ruined my life but also made me a better person. I’m grateful for everything around me because, as unexpected as my first attack was, I could lose the ability to do everything a ‘normal’ person can do. We tend to take our health for granted, but if you’ve lost the ability to function, as most of us with this disease have at one point in our life, you know to live your life to the fullest every day because you might wake up the next morning unable to do those things.

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