October 10, 2016
I’m sitting in the glider rocking chair and it hurts. I like the movement, as it feels comforting and somehow warm, but holding my upper body up and pushing ever so slightly with my legs is very tiring right now. It’s Thanksgiving weekend and my boys have been home for 4 straight days. I love having them both around and the activity that accompanies them, but I also can’t wait for the weekend to be over and my chance to rest.
The renovations are very tiring on me. The noise, the extra cleaning and disorganisation that comes with it adds to my exhaustion. My quest for minimalism was to make my life easier, with places for everything and everything in its place. Cleaning uncluttered surfaces and having few things to pick up before turning on the robot vacuum, affectionately named Robo-bug, had made my life much easier than even I had hoped and I miss that and the extra energy that came with it. My life has been reduced to using energy like currency, without ever knowing how much I’ll have at any given time. I’ve learnt to be frugal for things that matter less (cleaning, cooking) to have more for the things that truly matter (family and friends).
Last night we went to our wonderful friends house for a family holiday gathering. We really do have some incredible people in our lives and I am very grateful for their support. After an evening of hearty food and engaging conversation we left with lovingly packed leftovers and sore facial muscles from laughing and smiling.
My friends mother was asking what is next for me and I wasn’t sure how to answer. I guess this week I have a few phone calls to make, starting with the neurologist who I had hoped would investigate hypokalemic periodic paralysis. I’m not sure what the next step was with him. I was so upset when we left I’m not really sure what the game plan was. I was thinking maybe I should ask my family doctor for a referral to a rheumatologist, since they seem to be the unofficial auto-immune specialists. I’m not really sure what else I can do though. I still have such a hard time being okay with spending so much money to go to Mayo clinic.
I had another check in from disability insurance. As seems to be the theme, she called when I was in bed resting. It was an uneventful call as most of my answers hadn’t changed. She said that, on her end, she had brought my case up with the doctors within the insurance company, and they weren’t interested in speaking with me as they doubted they could do anything. She didn’t even need me to send copies of my latest doctors notes, which I actually found disheartening in the sense that it made me feel somehow even more disabled.
The garden is pulled and all the vegetables are washed and waiting to be processed but I’m so tired. It’s time for my 3rd nap of the day. I wish I could go back to the time in my life when tired was an anomaly instead of the norm.