Hydrocephalus: How bad does it have to get?

Waking up with a headache a few days ago is nothing new. One that doesn’t go away, also nothing new. In fact, nothing about that day was different to any other time. I took some Codeine early in the day because I sensed this one would not let up. I figured I’d go for something stronger than Panadol (supermarket brand) and just get rid of it.

Wishful thinking on my part.

After dinner, it still hadn’t subsided and had gotten worse in intensity. Around the back of my head, pulsating gently, almost side to side moving up to the middle until it felt like the pain consumed all of me. I took another Codeine and Ondansetron (for nausea), especially when the intense stomach pain joined the percussion.

About an hour later, I was in full blown pain and seasick with nausea, going back and forth to the toilet. It’s a helpless moment, so familiar to me, yet I started cursing. What or who exactly I was cursing or mad at, I don’t know.

Do you know how good it feels to hug a toilet bowl when you’re feeling isolated and lonely because no one else can help you, or is even aware of what’s happening?

Have you ever had pain that literally felt like it was slamming you from side to side on the ground? I can only imagine what I must have looked like, fighting this invisible menace. Writhing from side to side, on my bed. On the floor, kneeling next to my bed, not able to stand, too weak to lay down and feeling helpless. I begged and pleaded for death to come instead! Images of my family, my children haunting me through the cowardice moment it was.

I texted my cousin to tell him I was in pain, I just had to share it with someone. He came to mind. He started praying for me and texted it back, but I only saw the message the next day.

At one point I lay on my back, balling my eyes out and like so many times before, started questioning God. “Why has my life been full of pain? Why is my body filled with it now? Is this what you want for me? Is this how I’m supposed to go through life?”…

Now I’ve had many moments like these, I’m not perfect and I do question. After a few minutes of silence, I started hearing a song from when I was younger and sang along: “Be still and know that I am God. I am the Lord that healeth thee, I am the one who sets you free…” I grew peaceful, pain slightly subsided, enough to fall asleep. It wasn’t a peaceful night’s sleep though, because the pain wouldn’t go away.

Whether you’re a believer or not, at times like these I don’t think it really matters much. Some may say they don’t believe and don’t pray but I think we all end up questioning the need for our own suffering, regardless. It’s the kind of moment, I’m sure, many would be able to relate to…scary, uncertain and filled with helplessness.

I know the surgeon told me that when I have another episode, I should go to the hospital and would most likely have a lumbar puncture and/or ICP monitoring. In the midst of that pain, I managed to assess myself and evaluate my options. I came to the conclusion that even if this moment felt bad enough, there may be a possibility that it’s not as bad as it should be. What if the Codeine was making the pain in my stomach worse? Something was just familiar to me. I’ve felt like this so many times before. It’s either the medication or this was an opportunity for me to act…

I decided not to do anything just yet and recover instead. That meant lying in bed all day working and somehow managing to get through. Sleeping the rest of the day away as the last of whatever energy I had left, was given to work. It also means the next few days I’ll be lying in bed, resting and riding out the pain as it eases off. While I’m writing this, I’m extremely nauseous, in pain and extremely unsure of my own decision not to go to the hospital…

It has left me wondering though, how bad does it have to get before I make the call. I’m no stranger to these episodes or anything I’ve mentioned above. It’s a De Ja Vu, Hydro roller coaster ride topped with a side of overthinking analysis on my part. I’ve just been through this so many times, being told nothing’s wrong, I’m probably just being cautious. Feeling like I need to be 200% certain that I do in fact need medical attention I.e. brain surgery. I also realise that means having to fight the invisible menace to a point where I may not be so lucky next time…

The one “good” thing which I welcome is the loss of appetite. Since COVID-19, self-isolation and working from home, I’ve developed a very close relationship with food and have the waistline to prove it! Finding the silver lining is sometimes as simple as that because with a condition like Hydrocephalus, they are few and far between!