I am due to report in... here in the blogging world. But, there seems to be little to share. I feel like there should be some substance, some point, some news behind a post rather than me getting on here and babbling.
I get very little done each day. I do but a small fraction of what I would like to do... and what I used to do. I make sure my daughter is doing her schoolwork. I spend a few minutes prepping it, checking it over, and helping her with things she may be stuck on, or spend more time with her on the more involved projects. Then, I take care of the most pressing issue of the day... like calling insurance companies or ordering and organizing medicines. A lot of times I try to nap on the couch in the afternoon. At times I am successful and it makes me feel better in the evenings. I take oral medicines four times a day and have to change the cassette on my IV pump once a day. (My husband has been doing most of the work mixing the medicine in the evenings.)
If I want to do something, like bake cookies, or go somewhere for a few hours, I have to plan ahead. When I go out I have to have a ride and help, and I have to save my energy. I have to make sure I take several oxygen tanks and my medical bag. Often, I'll try my best to schedule a down day or two between outings. And, depending on how I handle the outing, I may need a couple days to recover. The weeks I spend a day or two in Cleveland are the worst.
This month I have been to two different department stores for the first time in weeks. And, the only reason I've been able to do this is because I finally broke down and accepted the fact I could... er, need to, use the electric scooters at the stores. My oxygen tank proves to be unwieldy though and makes it harder to maneuver around the store. Most of the aisles are impassible and many people seem to not even notice, or care, that I am trying to get by, or that I'm stuck waiting until people allow me through an opening big enough to accommodate the scooter. It feels a bit like when, stopped at a crosswalk one will wave some slow person through, and then for the next five minutes a cascade of people use the crosswalk while one tries to patiently wait.
Just going outside to get a few minutes of fresh air proves to be too much trouble now. The joy no longer outweighs the effort or the energy I have to spare. I have to disconnect my oxygen from the big compressor, hook up to a tank, and preferably, make sure my IV line is nicely tucked away so it doesn't catch on any protruding objects. By the time I walk out of the house and down the whole four steps on the porch I can feel my oxygen saturation dropping and my poor heart thumping. My poor heart. It's so tired of trying to overcompensate for the lungs.
In the evening I work my way upstairs, stopping twice for breaks, breathing, coughing, letting my oxygen saturation bob back above 90% before tackling the next few steps. Once upstairs, I prep myself for a shower.
Showers are an ordeal. In attempts to keep them dry, I cover the joints on my extension tubing and cover the catheter site that goes into my chest. I wipe down the catheter area with alcohol and a skin barrier wipe and then I cut the Aqua Guard cover down to fit well enough and add extra tape. The Aqua Guard covers are a whole lot bigger than my site and If I leave them as they are, they just pull up and get everything wet. Then I'd be forced to change the whole dressing at the site for fear that if I didn't, I'd get an infection. I have to take showers with my oxygen on. I hang my IV pump on the towel bar. The tubing snakes out of the shower and water trickles down, making a puddle of water on the bathroom floor.
Going to sleep at night is becoming more of a challenge. I'm still doing well cutting out the sodium, but with the warm, humid weather, I've had a hard time limiting liquids. I miss guzzling water. Even though I am not guzzling liquids, I find it difficult to resist several small glasses of cold tea each day. Of course this adds to the water retention, the swelling, and just general achy, puffiness. Lately it has been a toss and turn battle, trying to find a spot where it feels comfortable enough to attempt to sleep. If I were not sick I could get up and read a bit or work on a project. But, I know better. Even if I cannot sleep my body needs to just rest.
If I can get settled and somewhat relaxed, my oxygen saturation goes up and my heart rate slows down. I feel better, even more normal, during that flitting moment between being awake and drifting off into sleep. I suppose, it's as normal as I am going to feel with an oxygen tube secured to my face and an IV line running from my chest to the pump on the bedside table. It's this quasi-dream-like state that reminds me of what used to be, before the loss of lung function and before the heart failure. It also reminds me of the hope we hold close, knowing that one day I will come home with new lungs.
