I’ve been missing from these pages and it feels like losing a limb. Words are usually more reliable for me. They don’t normally let me down. I don’t like it. I’ve lost interest in writing about my disease. It’s become boring to me. It never changes. It never gets any better. It barely gets any worse. My problems of late are of my own making which makes them even more infuriating. When you create your own problems there is nobody to blame. And I’ve created some doozies so I should know.

My latest accomplishment landed me in the hospital where I spent several days in the ICU as a result of severe hyponatremia – or low sodium. My water drinking had gotten out of control. I was drinking upwards of eight or nine liter bottles each day. To some, water drinking might seem like a good healthy habit but like many things something good can turn not-so-good when taken to the extreme. My low sodium resulted in a series of seizures that rendered me unresponsive. This time my home health nurse happened to be at my house to perform a tube change on my suprapubic catheter and he found me out cold, foaming at the mouth in my sleeping chair. After trying to wake me he had to call EMS. Off I went to the hospital yet again. But this time I was admitted into the ICU and intubated which was a first for me.

At the hospital I was put on complete fluid restriction, hydrated via intravenous fluids nothing at all by mouth. When intubated your mouth is rendered useless. My typical state of dry mouth was irrelevant with a tube down my throat. Hyponatremia messes with me in many ways not the least of which is cognitive – I lose my memory both short and long term. I can’t remember which days I was in the hospital without looking it up on my computer. It’s maddening to me. Losing my memory makes writing extra difficult. Words require memory both short and long term.

The days in the hospital were long and boring. I couldn’t do a thing. I had no tools with me. No Kindle. Nothing to write with. I didn’t even have my phone. I didn’t really know why I was where I was. All I could do is sit there listening to machines whirl. I couldn’t play games on my phone. I couldn’t call anybody. I couldn’t move my limbs. I didn’t have any of the tools that I needed to do any of those things. And I had a tube down my throat.

After a little bit of time I was transferred to a different hospital and taken out of the ICU. Finally I was able to have some tools and I was allowed to get visitors. And I was able to have some of the things explained to me about what was happening. Up until this point my memory issues made it impossible for me to have any kind of understanding of what was happening. I constantly had to ask the doctors and nurses where I was and got reassurance and that I wasn’t gonna have to stay there.

I was still on fluid restriction. And I had to get used to the dry mouth that comes along with not being able to have any liquid by mouth. I’m not sure why my dry mouth gets so bad. I don’t know if it’s a medication that I take or if it’s just a natural state for me. But my dry mouth gets really bad and it makes me need to drink constantly to keep my mouth wet. It’s how I ended up getting to the point I was drinking eight or 9 L bottles of water a day like it was nothing.

You would think having to be in the hospital for hyponatremia would be enough to scare me into not wanting to drink so much water. But I still struggle now that I’m out with the fact that my mouth is constantly dry and I don’t know how to keep it from getting even more dry. I’m limiting my water intake now that I’m home and trying to keep myself down to 2 L of water a day and I supplement that fluid intake with liquid like Gatorade that’s designed to replace electrolytes. But I know even that is against the rules and I’m doing it at my own risk because I’m really supposed to keep my fluid intake down to a total of 2 L a day and I can’t do it. No matter how hard I try.

I’m struggling with finding a reason to go on. I know that sounds dramatic and I don’t mean it’s a sound so dramatic but it’s how I feel. I don’t know how to fill my days beyond sitting at my computer between trips to the bathroom where I can get out of my chair. The old me would use this time to write and keep myself busy by keeping my mind busy but the new me struggles to find words for writing anything. The new me finds the subjects that I have to write about not interesting and I’ve lost interest in keeping up with my blog. The thing that has kept me going all this time. The dream that someday I could turn this blog into a book or write a book of my own. I have the time to do it I just need the words and right now the words aren’t coming.

It’s hard for me to imagine why anybody would wanna read any of these words. They’re just not interesting to me and they’re happening to me. I’m gonna post this blog and it’ll be amazing to me that anybody will read it. That anybody will find value in these words. Maybe nobody will. I guess we’ll see. Baby steps. That’s all I have so that’s what I have to do.