I want to sleep
From the end of November till the first week of December I couldn’t fall asleep once I got downstairs and wanted to continue sleeping in my chair. This usually happened around 4AM, so I really could have used some more sleep. It made me feel hopeless. Every hour I’d wake Hein up because I kept panicking. Or I’d be behind the computer at 4. Our GP prescribed us a different sleeping agent, which I’ve started taking at night. Because of it I’ve started sleeping for six to seven hours a night. The tradeoff is that I keep wanting to go to bed earlier. I keep waking up at 1:30AM feeling short of breath, despite the fact that I’m using an oxygen mask. I’m using more oxygen at night than everbefore.
Urinating was getting more tiresome by the day. I’d often panic at the thought of it. Panic would hit the hardest whenever I’d have to get back in my chair, with my arms still dangling in the stairlift. In those moments, I’d be gasping for air. Within a week, I had made up my mind and got a catheter. All I have to do to urinate now is twisting a valve on a small bag on my leg. It still gives me the feeling of relief it did before, about 7 times a day. I strongly believe in “costs vs. benefits”. Changes have to be made if the current situation is too costly. My helps always dreaded scaling the stairlift on their own. Now though, urination is just a matter of twisting a valve.
On the evening of Saturday, December 29th, 2007, Jeanet passed away, surrounded by family. She had lived with ALS for more than 10 years.