Out of everything I shared on this blog, I think this is the post I was dreading the most.
Why?
Well, although everything I have previously related is deeply personal to me, what I will reveal next is the part of my life that is hard to articulate, let alone display on the internet...for everyone to see.
I am going to tell you things that could make you react in several ways. You could very likely judge me. You might misinterpret my actions. You may even genuinely question my sanity at some points.
But I can guarantee that as you finish reading this post, you will feel a slight shock as you learn about the darkest moments of my life.
But at the end of the day, only you can decide what lessons you will take from my story.
After my diagnosis, I believed that things would change. I thought that it would resolve a great deal of the issues in my life.
But that wasn't the case.
There is one thing I learned almost immediately.
A diagnosis isn't a cure. Life doesn't automatically transform. Problems don't disappear.
If anything, it created entirely new problems...ones that I hadn't seen coming.
My doctor informed of my treatment options, which in Portugal, weren't many. I could either choose to start with Modafinil or the only other remaining option, Ritalin.
Being the born researcher that I am, I had already done my investigation and then discussed these with my sister, who warned me strongly against Ritalin. She stressed that she had seen many documentaries on the extremely negative side effects of this drug.
So, of course, I chose Modafinil and began my treatment in Angola.
For the first few months, I felt like a new person. I finally had a treatment that camouflaged my symptoms. It was incredible. I felt normal for the first time in my life.
I began to feel invincible and then entitled...like I had every right to reject this "curse" that had ruled me for so long. I deserved to live a normal life.
This fixation on "normalcy" became my lifeline. One I hung onto for dear life.
Nothing and no one could make me believe any different.
Furthermore, you should also know that people who suffer from Narcolepsy are generally, dependent on medication for the rest of their lives. A daily norm.
The problem is that these pills are stimulants (promoting wakefulness) and its effects eventually subside. The body builds up tolerance and consequently, the effect begins to wear off.
This was my case. After a few months, I sensed the drowsiness slowly reclaiming my body once more.
I got in contact with my Doctor via email every three months to ask for a new medication, she then forwarded the prescription to my mum. After this, my mum had to go to the pharmacy to purchase them, and then find someone visiting Lisbon who would eventually fly back to Angola before it finally reached my hands.
An extremely lengthy process as you can imagine.
So with the newfound circumstances, I sought my doctor's opinion on how to resolve this problem. I shuddered at the mere thought of going back to my previous life.
Her solution? Ritalin.
With no other option, I conceded.
The next year and a half would serve to prove my sister right.
The side effects began almost instantly. They worked in phases, one after the other.
They began with headaches, then insomnia, irritability, palpitations and loss of appetite.
Although far from ideal, they were manageable.
I lost most of the weight I had gained over the last few years, in a matter of weeks. The loss of appetite was the one constant side effect that never subsided. I could go an entire day without remembering to eat. My stomach sent no signals to my brain to indicate any hunger whatsoever.
The palpitations, however, were the worst. My heart sometimes felt as it if it could burst out of my chest at the speed it raced. I began having bouts of anxiety and tightening in my chest that sometimes lasted for hours.
At this time, I was also having serious problems in my relationship, which added additional stress on top of the symptoms I was already struggling to adapt to. The anxiety increased which only worsened my palpitations...I started to feel as if I was going crazy. As our issues escalated, I could no longer handle it and so I did the only thing that was within my control. I ended the relationship.
Looking back, I believe this was a critical moment in my life, greatly responsible for throwing me into somewhat of a "disconnected" state. I did what I usually do in these situations, I shut off my emotions and proceeded to live in a flat out robotic manner.
I felt nothing for a very long time. If you looked at me, you would probably think everything was fine. You would probably wonder how someone who had just ended a 5-year relationship could get over it so quickly...
But I guess that's the funny thing about life. Ninety-nine per cent of the time, nobody has a clue about what is happening inside someone's mind and what they do when they're alone. Most people only ever see the "act" that is presented to them.
Now, I am in no way trying to suggest that they hold any responsibility for that. We are all guilty of this. We, unfortunately, are not mind-readers. I'm simply stating a haunting fact of life.
But I wasn't dealing with it at all. I was evading the emotions, avoiding the truth, and anything remotely real. I have this remarkable gift...I call it the "switch off" button. I can stop feeling whenever I choose.
Unfortunately, however, I do not have possession of the "on" button. So I can turn it off...but I hold absolutely no control, or even knowledge, of when it will turn itself back on. This is the highly inconvenient part. But when it does, the feelings hit me like a ton of bricks, and every emotion I avoided, flood me with a ferocious force.
My memory of those first months is vague, I only know that I threw myself into my job. I began working more and more as time went on. Eating less and less, sleeping less and less every day.
By the end of that year, I had managed to make things even worst for myself.
Eight months after my breakup, I reconciled with my ex, only to end it once again two months later. I was plagued with guilt for a very long time because I knew how much action affected him. My only defence is...I legitimately was not in the most stable frame of mind.
You see, the truth is, I was starting to get seriously off course with my medication. I was increasing my intakes slowly every day. And the more the effects wore off, the more I took.
The side effects escalated to an alarming level. I began to feel restless most days, I had to force-feed myself...food had no appeal whatsoever. My mood swings were now a constant, I could go from feeling on top of the world...to drowning in anguish...in a matter of minutes.
To make matters worse, the job I used to love so much became my personal hell.
I began having panic attacks at the mere thought of going to work.
So, after much deliberation, and support from my family, I decided to quit. I made a deal with myself to take a break from the corporate world. I wanted to work for myself. I had a handful of clients who I knew would be more than happy to follow me and so I began to feel hopeful once again. Things were going to be ok.
But yet again, fate had other plans in store for me.
On my last day at that job, I got a call from another company. They invited me for an interview. They were practically pleading. I informed them that I wasn't looking for another job, but I also didn't see any harm in listening. It was only the professional thing to do, I thought.
The proposal they presented me with was impossible to refuse. For the first time in my career, I would responsible for not only a team but an entire department. Not to mention earning nearly three times more than my previous salary.
I accepted.
A decision I would very quickly come to regret.
Let's just say that it was the most overwhelming, overexerting, strenuous and mentally corroding occupation that I ever had the misfortune of doing.
Adding to the fact that I was in a mentally weakened state already...my days were basically counted from the moment I stepped into the role.
But I want to be clear on just how much this job demanded.
I was sleeping at most four hours a day for three whole months. I woke up at 5 am every day and begrudgingly closed my eyes at 1 or 2 am.
The only way I was able to do this for such an extended amount of time was thanks to the Ritalin. It's humanly impossible to stay on your feet for 3 months straight with no food, no sleep and working with Events. An area that demands energy, meeting impossible deadlines, and in my case...being able to be in three places at once to hopefully answer to the large number of clients we had, saddled with an extremely small team.
My nights were now not only plagued with menacing nightmares...but my hallucinations began to truly unsettle me.
Because they didn't feel like hallucinations. They felt as real as you and me.
Working late most nights, I would feel a presence watching me, walking behind me...touching me. I had to put the TV on as loud as I could that time of night, with the most comedic programmes I could find, just so that I could cope with the sheer terror I felt.
By the time my 30th birthday came around, I don't even know how to describe to you in words, the extent of my emotional and physical degradation. I was hardly functioning anymore.
Some friends of mine insisted on throwing me a birthday party, being that it was such a significant date. I agreed as long as I had no part in it. I physically couldn't handle any more responsibilities.
My birthday couldn't have fallen on a worse day. I hadn't slept at all in two days due to the number of crises that occurred that week at work.
I hardly even remember my birthday. Most people put it down to alcohol naturally but in truth...I didn't even drink, I was actually "drunk on sleep" or technically speaking, painfully sleep deprived.
Funnily enough, sleep deprivation looks a lot like being drunk; your eyes glaze over, your speech begins to slur, and you can barely hold yourself up.
But even though it's a night I hardly remember, it's most certainly a birthday I will never forget.
My final breaking point came the very next week.
I was sitting at work that following Wednesday, stressed as usual, but feeling a bizarre itch. I felt it everywhere.
Half the day went by and I hardly focused on this...I was overcome with more important problems to resolve.
That is, until...I felt something on my arm. I looked down to find a very small, strange insect crawling on that very same spot.
I jumped to my feet and frantically raced out of the office, ignoring everyone's concerned looks and repeated inquiries.
Arriving at home, the scene was something that, to this day, I still can't make sense of it in my head.
My house was infested.
I have no idea what these insects were, or where they come from. All I know is...they were everywhere.
I called a disinfestation company immediately and exited the house as soon as they had finished the job.
My heart raced as I stood outside the building, feeling totally and utterly lost. A surge of emotions began to bubble up inside me...I felt like a volcano was preparing itself to erupt inside me. I got into my car and drove to my friends' house which was only 5 minutes away, and stood outside her door, feeling even more perplexed when she opened it and motioned me in.
I broke down, still standing outside, as realization washed over me that I couldn't go inside.
What if they were on my clothes? I couldn't infest her house too.
But being the phenomenal friend that she is, brought me a change of clothes once I managed to explain, and forcibly ushered me into her house.
To sum things up, not wanting to overextend this already prolonged post, the disinfestation was pointless. So I booked another. But going back to my house, I was charged with paranoia...I felt like I could still see things moving. I started to scatch again.
I couldn't imagine sleeping in my bed or sitting on my couch, wearing my clothes, touching my books...I no longer felt comfortable in my own home.
From then on, I stayed at my sister's house. I didn't go back to work.
This was the most time we had spent together in a very long time, and it was during this time, that she had the chance to see the extent of my unmistakeable deterioration.
Understandably, she became highly concerned.
You may be shocked to hear that all of this, only brings us to Friday. My sister sat me down and began voicing her concerns. She expressed how much my behaviour was genuinely frightening her. She related how she'd noticed me slurring my words, spacing out, start talking about one thing and then radically, as if I'd forgotten what I was saying, continued talking about something else entirely unrelated.
She said that sometimes...I even looked drugged.
She then made a suggestion. She suggested that it might be time to start taking care of myself and that, under the circumstances, the best solution might be for me to move.
Four days later, a single suitcase in hand...I boarded a plane to Portugal, leaving my entire life behind...
I just wanted to apologize for this extremely long post, but it was impossible to cut out much of the information I felt was necessary.
It is important to me, for people to understand the full impact a simple condition that is sometimes mocked, can have in a person's life.
It's a compilation of elements that truly affect you, your decisions, your mental state, and ultimately your entire life.
I hope this changes some of the views people may have regarding Narcolepsy and, most importantly, medications like Ritalin.
But this isn't the end...there is still more to come...
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