I was SO scared to sleep last night

But it was much better than the previous night, and for that, I am grateful. I’d told a young lady who always checks, how scared I was to sleep. And you can therefore imagine how great it felt to tell her that I survived the night.

Resuming Rinvoq after the break meant that it felt as if I was starting it afresh, never took it. Every side effect was as bad as the first time. The stomach bloating and pain and weird creepy crawly intestine as if I’m in an IBS flare where it feels like you have a baby that’s kicking and making waves in your belly. The headaches. The swollen throat that closes up and causes bad snoring… (That one never stopped except for when I was off the treatment.) I can’t even make the Afrikaans g sound anymore. It’s quite scary what this has done to my throat. And the horrific dreams. Extremely vivid and mirroring in a gruesome way, the actual pain I’m feeling.

Thursday night was the worst. The children slept better so they didn’t keep waking me with their noise, which meant, I could sleep better. Too better. Remember, Rinvoq makes many of us feel anesthetized and terribly sleepy almost all day too. That night was so bad I contemplated just quitting and letting the disease continue taking my lung function and turning me into a ball of hellish, burning pain again.

I dreamt I was holding something which then turned into glass right before my eyes. The glass shattered into small shards. And pierced my right hand. Many pieces embedded in my right hand. As I used my left to try pull them out, pieces that were stuck in my left hand would pierce my right hand too. I looked at my fingers, full of little slivers of glass, the pain horrendous as the pain grew worse.

Then I woke up. In real life, I had pain from elbow to the tips of my fingers. My hand was swollen and stiff and sore.

Then in another, my husband somehow got a branch into my throat from in front of me as opposed to through my mouth and down. I couldn’t speak to tell him he was killing me. But then he realised and started trying to get the branch out my throat. But each time he tried to pull backwards, the branch would cut off my airway completely and I didn’t have the ability to tell him I was dying. Then he’d realise and lower it again. Then he tried again to remove the bean h, the roughness causing extra pain in my throat, but again I’d choke and have no air.

Turned out I was on my stomach and my throat was so swollen that when unconscious, it wasn’t staying open. It was painful and swollen feeling in real life. THAT was when I truly started believing the treatment will kill me before my diseased lungs do.

There were other dreams when I tried to sleep. I couldn’t roll over but on my stomach I was being smothered and dying.

But, last night was normal. And so, I hope that today will be normal too.