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Hello everyone, my name is Evelle and I have just turned 30 this year. I hope to share my story with anyone who has vasculitis, peripheral neuropathy, or dealing with the ups and downs of a health condition. Diagnosis and Health Condition I have a diagnosis called "mononeuritis multiplex" and it is suspected to be non-systemic vasculitic neuropathy. In a simpler explanation, it is an autoimmune condition where the immune system is attacking blood vessels supplying the nerves, causing blood vessel inflammation and lack of blood flow, thus resulting in nerve damage.
For me, the nerve damage occurred on all four of my limbs. I experienced swelling on my fingers, pain that felt as if my fingers and toes were electrocuted, and numbness as if there were thousands of pins and needles along my arms and legs. The loss of sensations and loss of strength in my limbs also affected my functionality and mobility.
The journey of diagnosis had not been smooth. When the first attack happened in 2021(sudden nerve damage to the first nerve on my left hand), it did not occur to me to visit A&E. I visited GPs and a specialist where I was misdiagnosed with carpal tunnel syndrome and almost underwent an unnecessary carpal tunnel release surgery. The only treatment I received was physiotherapy and something was amiss to me at that time. I was "diagnosed" with carpal tunnel syndrome on my non-dominant hand and that did not make sense to me. I was lost and did not know where to seek help from.
Months later, another nerve was damaged. Still naively thinking that it was not serious enough to warrant a visit to A&E, I went to a polyclinic the next day and was referred to a public hospital.
A long month later, my neurologist picked up my condition swiftly during a nerve conduction test (thank goodness!) and took prompt action in sending me for diagnostic tests. By that time, I had multiple nerves that were damaged in all 4 limbs. They termed it "evolving mononeuritis multiplex". My Personal Struggles One of the biggest challenges I faced was dealing with lifestyle changes due to peripheral neuropathy.
At my worst, my left hand could not exert force, not even to hold a piece of tissue paper. My fingers could not feel anything and would get stuck while wearing a jacket. I would not realize it until I wondered why I could not get my arm through my jacket. My right hand could barely hold the weight of a plastic cup half-filled with water. Texting on the phone became difficult and I barely used my phone or computer for months.
Sometimes I will joke with the people around me that I am a big baby or that I am an old person. I needed a caregiver around me almost all the time and it could be a family member or friends. I needed someone to buy, prepare and serve food to me. I drank from straws and ate with lightweight utensils only on one hand. There were automatic soap dispensers around the house as I simply did not have the strength to press for soap.
Whenever I had to ride a car, someone had to open and close the doors for me and help me with the seat belt. When I take public transport, like an elderly, I need to find a seat, wait for someone to press the bell, and wait for the bus/MRT to stop before alighting or I will risk falling over. Going up and down the stairs and standing on escalators were often scary. I needed to hold onto the handrails and focus on the steps so that I would not fall. My heart skips a beat whenever the bus/mrt/escalator jerks.
Despite being on treatment for a year, my nerves have not fully healed and I still do not have the strength of a healthy individual. I still need help with many of the day-to-day activities that involve the use of hands. From a strong and independent individual, I became weak and reliant on others. I lost the ability and freedom to do things anytime and anywhere I want. It is upsetting to me. I may look perfectly healthy on the outside, but I am not. I feel confined and jaded within my physical body and it is extremely frustrating. Dealing with Health Deterioration Another hardship I encountered was experiencing deterioration of my condition.
It was disheartening to see myself getting weaker each week and experiencing more pain while waiting for medications to take effect. That took months. I would constantly worry about whether the medications were working at all, if I needed the stronger and more toxic medication, and whether there was anything else myself or the doctors could do, even though they have done plenty already. I could see my family members getting more and more concerned and it broke my heart.
It IS a long process because it takes time for the immune system to be fully suppressed by the medications, for the immune system to stop attacking my blood vessels, for disease activity to stop/stablize, for blood vessels to heal, so that my nerves can regenerate properly. It was despiriting and I cried many times.
I will not say that I have pulled through but I am glad that my journey to recovery has finally slowly begun. Outlook in Life Since having a health condition, my lifestyle has changed, my priorities have changed, and my perspective on life is no longer the same.
I stopped working and I spend more time with people who care about me. I slowed down, and am more present for them. I used to enjoy yoga, outdoor running, swimming, and scuba diving. I am unable to do any of these now but I hope I can do at least some of them in the future. Unfortunately this is life and all I can do is to change how I live my life.
My vision had also deteriorated as a side effect of medications. Although a full cure is impossible, I am still hopeful as treatment is available to restore my vision. I have lost many things but I have also gained a lot.
It has been a tough journey to identify what my needs are, what my values are, and where my priorities lie. I often think about what really matters to me at a particular point in time, AND what really matters to me at the end of my life. Gratitude
I have learned to practice gratitude more often now. I have learned to let go of being a perfectionist. I have learned to satisfice (instead of maximize) and to live a simpler life. A $5 Daiso bag that is extremely lightweight to carry around is good enough for me.
I have learned that I do not need to care about how others look at me or think of me. I sit on the MRT seat because I need to. Comfort is more important to me so T-shirts and shorts are sufficient, even for celebratory events.
Family members, relatives, and my close group of friends are certainly my pillars of support. They have been extremely accommodative to my needs and immunosuppressed condition. They would often help me with household chores, cut nails for me, open and close doors for me, help me with shopping and carry my purchases all the way home. They supported me through my difficult moments. They see my strengths and appreciate me for who I am. They see my weaknesses and yet still embrace me for who I am. I can never thank them enough for being here for me.
My Advice
For those with health conditions, know that you are not alone in this world. I do not like having neuropathy, do not like having an unconfirmed diagnosis, and there is no need to like it. No one likes being ill in the first place.
It is okay to be sad. It is okay to be frustrated. And it is definitely normal and natural to have plenty of down moments, for we are only humans. I have learned to acknowledge that I have a health condition and my life's trajectory will and has changed because of it.
For the rest, know that no one's struggle is invalid, never dismiss anyone's hardship. Sometimes all we need is a listening ear. Sometimes all we want is for you to experience the world for us and share your stories with us.
Life is not easy, especially with a health condition. I wish that everyone can have a little more empathy and compassion to make the world a little kinder to live in. Never judge a book by its cover; never assume a person (especially a young one) is healthy simply based on appearance.
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