My Life Ended When I Was 25 Years Old – Part 1

Who knew that waking up with a pins and needles feeling in my feet on that fateful Tuesday morning would transform my carefree life into a disaster zone? Not me. If I could go back and knew what was coming, I would buy myself a couple grams of heroin to cope with the series of events that were about to unfold.

It all started nine years ago. I was 25 years old and working a relative pleasant job as a laptop and computer technician. My days were spent in the back room of a computer shop surrounded by the comforting hum of a handful of spyware and virus infested machines. I led a carefree life, spending my weekdays in the shop and my weekends at underground electro parties, where alcohol and other substances flowed freely. My wife was still my girlfriend at the time, and the future was looking bright. We were able to save some money and work on our dream of leaving Belgium and Europe for more tropical destinations.

Then, one day, I woke up with a tingling feeling in both my feet. Thinking nothing of it, I went working like usual. During the day the feeling seemed to be slowly rising. By the time I went home it was already up to my knees. This is where I get slightly worried. Next morning, both my legs have the tingling feeling, from the bottom of my feet to my thighs. After another day at work, the feeling is already up to my stomach, and I decide to visit my doctor on the way home. I jokingly tell him what happened, and his face turns serious. He looks at me and says: "Take your things, call your wife, and go to the hospital right now. You might have (*insert name of an exotic syndrome that I completely forgot the name of) and if that feeling reaches your heart, it can stop it."

So off to the hospital I went. This was the start of ten days of pure hell. They started out with a cortisone treatment to stop the feeling from going up any higher. Then the tests started. Not too bad at first. A few EEG's, a couple of MRI's, a lot of blood tests, ... But everything came back inconclusive. They weren't sure what was wrong with me. Or perhaps kept their theories to themselves. In the meantime, the hospital staff keeps moving me. At one point I'm lying next to a dying cancer patient who is saying farewell to his family. Then they put me in the same room as a sufferer from violent diarrhea, let's just say I didn't get much sleep that night, with all the diaper changes that were going on next to me. I hope I can erase the memory of that night out of my mind one day.

After three days of constant tests, they say they want to analyze some of my cerebrospinal fluid. Now this is done with a particularly nasty test, called lumbar puncture, or spinal tap. This involves jamming a huge needle in your back, in between two vertebrae. I'm a pussy when it comes to pain so you can imagine I was not comforted in any way when they said it was going to hurt like hell. They wheel me into this room, where four nurses and a doctor are waiting. Those four were there just to hold me in place, making sure I didn't move as the needle punctured a relatively soft area in my spine. They were right, the blinding pain that shot through me when they rammed the huge needle in there was like nothing I had ever felt before. I felt like I was in a Hellraiser movie, with Pinhead himself laughing down at me.

After this ordeal, I spent 3 days in bed. One of the more common side-effects of this procedure is a smashing headache. The only thing that helped was lying down. Friends would come over, and we would have a quick joint on the parking lot. But after five minutes the pounding pain started again, and I had to lie down. At least I had a room for myself at that time.

Six days had passed when three doctors walked in the room. An old, friendly looking man with a limp announced himself as Professor D. (*name omitted for privacy reasons). Something was up. I could feel the tension hanging in the room like a thick, choking smoke. "I'm afraid I have some bad news for you, Jan. All the signs point to multiple sclerosis,” said Professor D. A certain numbness took hold of me while my entire reality collapsed in front of me.

"Multiple sclerosis? But that's impossible. I don't want to spend the rest of my life in a wheelchair!" were the first thoughts that raced through my head. Feelings of disbelief, anger, and sadness all washed over me at the same time. "It's not fair," I thought, “why me?" It took me a couple of days to fully comprehend the importance and seriousness of it all. The professor was very helpful and said I had a relatively mild form of MS and, if using medication, could easily have a full life. But I should be prepared for more symptoms as the disease progresses over the years. That was the start of five years of crippling medication that severely lowered the quality of my life.

You see, the current drugs for multiple sclerosis works by suppressing the body’s immune system. My body was attacking my nerve endings, ripping them off their insulation and diminishing their power to transmit signals. This is why MS can have such a diverse range of symptoms. From the loss of vision and speech impediments, to complete paralysis. During a later flare-up a year later, I suffered from ‘going to the left’. I would walk and automatically turn left. My wife had to support me everywhere I went. I would miss my mouth when eating, and the entire left side of my tongue was numb. These are not fun conditions to live with. This just shows you how diverse the effects of MS on the body can be.

Professor D. prescribed me a drug called Interferon-Beta. But let’s get things straight. There is no cure for this disease. The only medication available slows the progress of this neurodegenerative nightmare. The cheapest first-line treatment is what I would be getting. The price tag of this drug blew me away. A box of 4 injections cost $1000! Luckily the Belgian social security system provided for this and paid $990 of it. My price was $10 per month. This was the cheapest medication available! This is where the medical system in a social society fails. There were drugs available on the market with a much higher success rate, and that could be orally ingested instead of having to inject myself in the leg weekly. But this medication is much more expensive, and the state would not provide for that until my disease progressed further. I basically had to be in a wheelchair before they would give me the better medication.

That seems flawed logic to me but makes sense in a society based on greed and profit. After all, the ‘good’ drug would give me a 60% reduction in flare-ups, while the cheap one only managed about 18%-25%. Wouldn’t it make more sense to give the best drug to the patients? After all, these are prevention drugs, so waiting until it’s too late makes no sense to me. But hey, what do I know?

The drugs had some severe side-effects. Interferons are created naturally by the body during illnesses such as the flu. These interferons are responsible for all the irritating symptoms of a flu infection. Fever, muscle aches, feeling tired, headaches, loss of appetite, … So you can guess what happens when you inject yourself weekly with these same compounds. Yep, I was struck down by the flu one day in the week! But I’m getting ahead of myself here.

After ten days, my ordeal in the hospital was over. Four MRI scans, two EEG’s, and two (yes, 2!) lumbar punctures later, I finally got home again, where I stayed for another 2 weeks, recovering from the shock that just went through my life. I cried a lot, I don’t mind admitting that. My big dream of living in some tropical country was smashed to pieces. How could I ever leave Belgium if I had to take this medication every week? And how could I ever afford this drug without relying on the social security system? I was in a state of panic, unbelief, and rage. THIS COULD NOT BE HAPPENING!

=> End of Part 1

The length of this story was spiraling out of control, so I decided to split it up in two parts. Next part will be about how I searched for other treatments to alleviate my symptoms and managed to ditch the medication altogether and achieved my dream of leaving Belgium.

Special thanks to @razvanelulmarin for the writing support! :)

EDIT: Read PART2 Here!


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