Into the Black

When Everything Breaks Down

Yesterday was a really tough day — physically and mentally I was completely drained. My symptoms had been intense for several nights in a row, and I didn’t fall asleep until around 7:00 a.m. each time. Then I’d wake up again between 10:00 and 11:00 a.m., exhausted and in pain. My legs ached and felt like they were full of lactic acid. Mentally, I just couldn’t put things into perspective anymore. It felt like my brain was covered in clouds.

Panic started to creep in because I felt so terrible. After talking to my partner (because I couldn’t think clearly anymore), we called my GP’s office. My regular doctor was on vacation, so I was scheduled with a stand-in.

Trying to Be Heard

Since this doctor didn’t know me, I felt the need to go over everything from the beginning. Yes, she had my file, but I wanted to make it clear how urgent the situation was.

We talked about my symptoms, the long search for answers, the many dead ends I’ve faced in the medical system, and the practical side of things. I brought my partner with me to help clarify or fill in anything I missed — I was completely worn out, frustrated, and struggled to explain things in a clear and chronological way.

The temporary doctor was kind and patient, but I could sense that she didn’t really know what to do with my situation. Then she asked: “What would you like to happen?”

That question hit me hard — I got emotional and frustrated. “Just fill up my whole week with different specialists!” I said.
She gently replied, “I don’t think that would make you happy.”
To which I blurted out, “Anything is better than this. I can’t go on like this.”

Lost in the System

Because of the wide range of symptoms, even she didn’t know which specialist would be the right one to start with. I tried to stay calm and said, “We have to start somewhere. If it’s not the right fit, they can refer me again — doing nothing is not an option anymore.”

She agreed and suggested we begin with a dermatologist to finally confirm whether I really have psoriasis — a diagnosis that’s been assumed for years but never officially confirmed. She also mentioned an allergist/immunologist might make sense, since I’m allergic to just about everything that grows, blooms, meows, or stands by the roadside.

Disappointment and False Hope

I actually saw an immunologist last year on my own initiative, because the neurologist from the sleep center didn’t think a referral was necessary. I found a specialist online with good reviews and even a personal intro on the hospital’s website — it felt promising.

But on the day of the appointment, I got a trainee. After just 10 minutes, he said he couldn’t help me and saw “no connection” in my case. I walked out stunned and crushed. All the hope I had built up for that day was wiped out in an instant.

Now, with my GP, I’m going to request a second opinion at that same hospital — but this time I’ll firmly (yet politely) request to see the specialist I originally chose. I’ve had allergies since childhood… and still someone says there’s no link to my symptoms? That kind of thing just makes me furious.

Two Referrals, Finally

So, fingers crossed, two referrals are now in motion: one to dermatology and one to immunology. The doctor looked at me and asked, “But how do we make sure you can actually get some sleep and rest in the meantime?”
Fair question. I only wish I had the answer.

Before my own doctor went on vacation, we had talked about temporary medication for sleep and rest. I’d already been using zolpidem and melatonin occasionally when things got really bad. But this time, he suggested something else: Clonazepam.

Clonazepam is a calming medication in the benzodiazepine family that slows down the nervous system. It’s sometimes used short-term for severe sleep problems, night-time agitation, or restless legs. “Sounds fine,” I said. “Just give me the prescription.”

Medication Anxiety

But in the end… I didn’t pick it up. I’ve become so anxious about medication because I react so strongly to it. I was terrified that it might make me feel even worse than I already did.

Still, after some thought and talking it over with the stand-in doctor, I decided to give it a try. So last night, I took my first dose. I was told I could take half to one tablet before bed — naturally, I started with half.

After taking it, I lay in bed with a book. But within 30 minutes, my legs started acting up again. I did feel a sort of fog in my head, my reaction time slowed, and I was a bit unsteady on my feet… but sleep? Nope.

An hour later, around 1:00 a.m., I took the second half. I got up and down twice more, but eventually… silence. I think I finally fell asleep around 3:00 a.m. and woke up around 7:00 a.m. Feeling okay-ish. Very groggy though. I had a coffee and then crawled back into bed — fell asleep again until 11:00 a.m.

The Day After

As I write this, I still feel kind of drugged. My head is foggy, my reflexes are off, and I feel like I partied way too hard last night. But hey — it did do something.

Today I’m just trying to take it slow and maybe even enjoy this brief pause. However small, I did sleep. And that’s something.