NMOSD, Me and Neuromyelitis-optica.net (My Savior) 9/11/21 - 9/11/22
Last updated: December 2022
On 9/11/2021 I was admitted to ICU with 95% of my body going numb waist down. My initial diagnosis was Transverse Myelitis and within 4 days I was to be told that I had NMOSD. My family was informed I will never be able to walk, let alone live for a year or two.
Doctors were experimenting with medication on a fortnightly basis as they were clueless about what they were dealing with, especially in India. Every time my spasm got worse I was thrown into emergency and given a high dosage of Baclofen injection in my spinal cord. And this continued for good 4 months.
And during these initial 4 months, I constantly thought, that I will never see my 9-year-old grow, and with my immobility, leaks, and unbearable spasms, getting bad, I went into the deepest of dungeons. I become a complete emotional wreck and went into severe depression moreover with no proper answers from my doctors I confined myself in my room in utter frustration.
Seeing me like my dad told me you might be one of the few cases in India but not across the world. So my search began and I came across this group. This community came as the biggest blessing that saved and transformed my life. I swear I am not telling a lie.
Finding strength in community
Many things happened when I joined this community...
Firstly my isolation vanished, there were so many warriors going through the same journey as mine. Secondly, the illness started to make so much sense now. I went on a reading spree and found mountain loads of information that were being posted directly by our warriors. A story, some useful input, or a question that might help you. This led to 3rd and 4th thing which is normalization and acceptance of NMOSD and my fear (mainly of the future) slowly started to fade away.
I came to know about the different medications, the ones that might actually work. I also came to know that initially, my dear doctors were treating me for MS. I never knew that diet played such a big part in spasms. One of the posts says that gluten and sugar are spasm triggers. I eat flat bread, roti, and a lot of gluten-based food. it's been 2 months that I have left food that has gluten and I will be completing 2 on month 14/11/2022 of spasm.
Also when I was being injected with rituximab I was scared again I posted my fear on the thread and got the kindest of replies.
Healing and acceptance
I accepted the new normal me and over a period of 7 months, my healing and recovery began in the true sense. I learned that mental health issues came as part of the illness and it was not abnormal. What made me feel even better was, how gently and supportively this topic was dealt with amongst community members. I was being given high dosages of antidepressants which I gradually stopped taking. I mean my anxiety levels were and still are high but it's okay.
I started going out with my assistive devices, one eye, and with help of 9yr old and began to enjoy life in midst of spasms and pain without fear of being judged. I began to use adult diapers and became ok with that too. I started taking care of the emotional well-being of people around me.
I became adamant to take my life back from this illness. And on my road to recovery, I started being kind to my body, started taking care of myself, started doing what I love again... And I saw my body begin to heal in the most amazing way. I became confident and started to face people even with one eye and the other being squint.
"I am alive and I am grateful"
The doctor who said I will never leave the assistive device was shocked to see my MRI report the lesion had vanished from the dorsal spinal. My c19 and C20 report states that I don't need my third dose and I avoid taking assistive device where ever I can.
I haven't recovered fully. My waist down is still stiff and hurts really bad. I can't sleep at night, especially with the onset of winter. My legs hurt. I get severe headaches due to having one eye but it's okay. I am cheerful and happy.
I am alive and I am grateful. I live in the moment cause you never know what the next moment will bring
but mostly I am grateful and indebted to this community and saved my life... thank you...
The 360 turn happened cause of you.
God bless each of the warrior members. Thank you all.
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