I\u2019ve been missing from these pages and it feels like losing a limb. Words are usually more reliable for me. They don\u2019t normally let me down. I don\u2019t like it. I\u2019ve lost interest in writing about my disease. It\u2019s 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\u2019ve created some doozies so I should know.<\/p>\n
My latest accomplishment landed me in the hospital where I spent several days in the ICU as a result of severe hyponatremia \u2013 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.<\/p>\n
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 \u2013 I lose my memory both short and long term. I can\u2019t remember which days I was in the hospital without looking it up on my computer. It\u2019s maddening to me. Losing my memory makes writing extra difficult. Words require memory both short and long term.<\/p>\n
The days in the hospital were long and boring. I couldn\u2019t do a thing. I had no tools with me. No Kindle. Nothing to write with. I didn\u2019t even have my phone. I didn\u2019t really know why I was where I was. All I could do is sit there listening to machines whirl. I couldn\u2019t play games on my phone. I couldn\u2019t call anybody. I couldn\u2019t move my limbs. I didn\u2019t have any of the tools that I needed to do any of those things. And I had a tube down my throat.<\/p>\n
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\u2019t gonna have to stay there.<\/p>\n
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\u2019m not sure why my dry mouth gets so bad. I don\u2019t know if it\u2019s a medication that I take or if it\u2019s 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\u2019s how I ended up getting to the point I was drinking eight or 9 L bottles of water a day like it was nothing.<\/p>\n
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\u2019m out with the fact that my mouth is constantly dry and I don\u2019t know how to keep it from getting even more dry. I\u2019m limiting my water intake now that I\u2019m 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\u2019s designed to replace electrolytes. But I know even that is against the rules and I\u2019m doing it at my own risk because I\u2019m really supposed to keep my fluid intake down to a total of 2 L a day and I can\u2019t do it. No matter how hard I try.<\/p>\n
I\u2019m struggling with finding a reason to go on. I know that sounds dramatic and I don\u2019t mean it\u2019s a sound so dramatic but it\u2019s how I feel. I don\u2019t 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\u2019ve 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\u2019t coming.<\/p>\n
It\u2019s hard for me to imagine why anybody would wanna read any of these words. They\u2019re just not interesting to me and they\u2019re happening to me. I\u2019m gonna post this blog and it\u2019ll be amazing to me that anybody will read it. That anybody will find value in these words. Maybe nobody will. I guess we\u2019ll see. Baby steps. That\u2019s all I have so that\u2019s what I have to do.<\/p>\n
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