IMPORTANT UPDATE (please don’t skip this)

I don’t know from where should I begin this post. Around 7 months back, I had a shooting pain in my right hand, which stretched partly till the shoulder. By natural instinct, I visited an orthopedist, and he speculated that I may have a pinched nerve inside my hand, which caused such immense pains. He prescribed some medicines, which didn’t work at all. And hence, I ended up visiting a hand surgeon.

He believed there could be some issue in my brachial plexus (the part in your shoulder from where the network of nerves descend into your hand), so he prescribed me an MRI. The MRI was done, and the reports were perfectly normal. However, the pain had now reached to the entire right side of the my body, and I started feeling unusually fatigued. I visited several neurologists after the pain had spread throughout my entire body and none of them had a definite answer.

Gradually, the fatigue increased, now happening 24 by 7 all days, and the body pain affected my joints, leaving me in a restricted condition to move and walk. This was after a month since I was put on several medications, with none of them taking any effect.

Surprisingly, one day I started feeling painful sensations even if someone touched me anywhere on the skin. This could be anything: a human touch to a simple tap on the table. The pain radiated immediately, once someone touched my skin anywhere on the body. So we visited one of the best neurologists in the country.

Here’s the news: I was diagnosed with a RARE, NON-CURABLE, and LIFE-LONG central nervous system disorder, which affected all the nerve endings in my body. I will not name the disease (because I don’t want to), but here’s what happens due to the disorder – I get tired extremely easily, even when I sleep. I have to tackle with excruciating body pain at all times, including arthritis-like symptoms in my joints. The touch sensitivity that caused me pain is the progressive part, and it has progressed to a point where even typing this post causes me pain and my fingers twitch.

This disorder naturally takes toll on the brain too, so I have to face constant tingling in my head, including recurring panic attacks and suicidal thoughts. I am on medications and they sometimes work, but most of the times they don’t.

So all of this has affected my life largely, and have restricted my working hours too. I enjoy working a lot, but now that I cannot function like a normal human being, I have to closely monitor the hours I can work for, and finish as much work as possible. My clients have been supportive and I am grateful to them for understanding my distress.

I don’t know to what extent will this disease hit me and affect my life, but I am definitely trying to be as positive as I can and leading a life with the help of my amazing family, friends, and my lovely girlfriend. Thank you for reading! I had been contemplating to write this post since long, but couldn’t muster up the courage. Please send all the love possible. 

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