A little about today…. I was pretty tired most of the day but not a lot of pain. My Mother came over to visit. Before she got here we received a call for a house viewing asking for 4:00 to 5:00. So that went from planning to stay home the whole day to we must vacate the premises. Tony got started on cleaning up plus all the extra things you have to prepare for with a showing. It worked out good because I’m usually scooting around in my transfer chair trying to do things I shouldn’t be doing in our room and constantly checking with Tony, asking if he’s done all the things I can’t see downstairs. He gets annoyed, I don’t blame him. I’m frustrated because I can’t just get up and start doing things. I’ve always been one to jump into action with things like the house, I feel helpless and frustrated.
Usually the last hour of preparing is complete chaos and stress. Shortly after the process of getting in the car we’re exhausted and fine again with each other. We then usually end up at the closest Mcdonald’s. I’m trying hard to avoid fast food. Tony is too, but having a tough time at it to say the least and it worries me. He used to eat very healthy and I know he’s eating worse since my diagnosis, it worries me a lot but then I give in too and usually order a caramel sunday. Today Mom ordered a chocolate one. We then back into the same parking spot on the side of the building, away from the sun to eat in shame.. Unless Tony manages to keep me distracted from his order, which is rare, we usually have a tense conversation starting right about the time he has eaten a double cheese burger and is pulling out his second box of nuggets. We have the same conversation about how the bad eating habits need to stop while I help him finish off the rest of the food. Then we might go to a pet store. Abby is always excited to go in. I sit in the car almost always unless I’m having a great day. Otherwise it’s not worth the ordeal of getting the chair in and out of the trunk and going in the store. After that we usually stop either at the dog park, a duck pond or drive by other homes on the market until we can enter our own home again and risk Tony’s back carrying me back up the stairs and getting my transfer chair back at my side.
I guess having Mom here today made me think more of it. We have a pretty predictable routine during showings. Not counting taking a stroll in my power wheelchair occasionally or Tony and I just getting out every now and then; the only other time I leave the house, or really my room, is when I leave on Saturdays with mom or to go to a doctor’s appointment. Honestly I don’t think I can handle much more because of severe fatigue and/or dealing with spasticity, muscle cramps or a back flare up. I usually need time to recover from getting out even if I really didn’t do much myself. If I keep pushing against ALS, It will push back harder.
At home I’m usually working on a project I have for my family, busy with this blog/site, experiencing the shower ordeal or looking for birds and bunny rabbits in my back yard. This is if I’m not too exhausted to do anything. I received a pair of binoculars from a great and dear family I got to know last christmas through the ALS association’s christmas program. I decided to get a little more in touch with nature. Something I’ve never really done. I love seeing the birds and even the leaves up close but I still can’t identify many. I hope we move to a place where I’ll have access to trees out of an easy to get to window. Right now I still have the hand and arm strength to hold the binoculars and use the focus dial on top of them but I can tell I’m losing it. They tire faster some days and I have to do it in shorter spurts, if my arms or hands are cramping I usually avoid it. I’m hoping to make it through all seasons being able to hold them at the right distance and to adjust the right magnification for focus. It’s something nobody can really do for me without throwing them out of the window from frustration because they have to be just the right distance from my eyes and the adjustments are too minute to guide someone else through what I’m seeing. I guess if I had been birding all of my life I might try to figure a way to continue longer. I’m glad and thankful I’m doing something I never really have and I enjoy it. I just have to get in my transfer chair and push a few feet to the window from my bed. I have summer and fall left to complete all seasons. We’ll see.
Back to the day, It was nice having Mom here during the time before leaving for the showing. I really didn’t even think of anything needing to be prepared for it. I’ll be so glad when we are moved and get no more notifications to vacate the premises while strangers come to view and judge my home. Of course we can refuse but we try to never do that. We did the usual while out. We stopped at McDonald’s, then to the nearby duck pond where Abby wanted to play with the ducks. She had no bread so they had nothing to do with her. After coffee and a stop for gas we were back home.
Before Mom left under threat of a thunderstorm, we watched a couple of episodes of Ridiculousness, a little guilty pleasure lately from MTV. They have marathons of past episodes most weekends and If I get to watch it I get a few laughs and cringes. A nice ALS distraction for me, but I do wonder how some of the people are faring after what looks like something fatal.
That was my Sunday today. Tomorrow is Monday and back to the more serious.
Until next time, take care,
This article was written by April