I remember shortly after being diagnosed with Narcolepsy and withdrew from my medication, Ritalin, which at the time was out of stock in our country, that,s when I went online to learn more about Narcolepsy. This was in 2008, I remember I was new to Facebook and it was around the time I had become computer ‘literate’ … lol. Since I had no computer of my own to keep track of my findings I used to post link about narcolepsy on my profile in order of not losing track of important articles I came across to.
In 2010, that’s when I started aggressively posting about Narcolepsy on Facebook, as I found out other communities worldwide of People living with Narcolepsy (PLWN) existing online. I joined many Narcolepsy groups on Facebook and Google Plus being glad I was not alone even though it felt like I was alone since I hadn’t actually met anyone from Kenya with the same condition. I think that was the time I started a Facebook page and a blog on Narcolepsy to reach out to guys in my region.
Fast forward all my efforts bore fruits as I was able to connect with other Kenyans, Ugandans, Tanzanians, Botswanians, Rwandans and most recently a Nigerian Living with Narcolepsy.
Managing Narcolepsy is an Online Sleep Awareness initiative that I initiated in search of knowledge and self-understanding, on what is Narcolepsy and how to manage and overcome the daily struggles brought about by it. I never thought it will start a ripple effects in touching so many lives.
Through my quest for more information for my uncommon sleep behavior I find out that the condition is unknown even to well-known doctors. After a journey of 5 years of misdiagnosis Kenyatta National Hospital KNH I was able to put a name to my weird sleep condition and my journey towards self-acceptance started.
But how could I accept myself if I do not know about the condition? The condition was so rare that the doctors who knew about Narcolepsy tried to withhold information about it so that I may not lose hope. A condition so rare, I was the third patient to be clinically diagnosed in that institution in 2008. A condition so rare that medication by then was imported by one pharmacy in the city for patients with ADHD.
It was when the medication was out of stock for 6 months I rediscovered that I can manage without the medications I was doing before I got diagnosed.
I remember how happy I was for being diagnosed and I was waiting to get well again with the medication I was being given. I think my brain was deliberately blocking out the doctor when he was trying to make me understand that Ritalin will not make the sleepiness bit go away but try to contain it. I used to look forward to my Tuesday or Wednesday clinics because I had hope that I will get better. The doses kept on increasing, each pill that I swallowed gave me hope that the sleepiness will go away but it never did.
I swear by that time I had forgotten how it felt to have a refreshing nap and not to feel sleepy during the day. I had forgotten how to laugh out at a joke without filling faint. Doctors told me that the aim of Ritalin was to increase my wakefulness and it will not address my cataplexy attacks, that there is no medication for that yet in our country.
Looking back my hope for Ritalin curing my Excessive Daytime Sleep made me not to speak out about the side effects that I had in the fear that it would be withdrawn before getting better. We never reached a point where it regulated my sleep since it went out of stock around 8 months of using it. During the time I was taking the medication my weight dropped, which to me was not a big deal as teenager. I never new a sensitive stomach until I developed gastrointestinal issues while I was on Ritalin, I still wrestle with it up to today.
Next posts i’ll be focusing on my journey to diagnosis and most of all reaching out to you to be the voice of suffering students in schools living with the Narcolepsy. Stay tuned!
Thanks in advance
