This morning started like any other morning. I woke up at 9 am this morning and I would have slept in more but there were things that I had wanted to do before things got too hectic. Xavier need his skates sharpened and I wanted to get that done before it got too crazy. I also had to buy some meat at Tarini’s for my luncheon on Monday and Mel has this lengthy list of things that are wanted me to pick up at the grocery store. I had to make 3 stops and I had asked Mel is she wanted to make a breakfast for Olivier but she refused to saying that she had done enough for him already with last night and then tonight. I had wanted to make him souffle pancakes and sausages. Her response was that she gave him a place to sleep for 12 years that was enough. She said you might have the energy to do all of that and then I need to clean up. I would like to point out that I have offered repeatedly to bring in a maid to help clean up which after was refused. I could also hire an executive assistant to help me out with this which she has also declined. It took me 90 minutes to rub my errands and by the time I got home I was exhausted. The best part was I did not get to buy the things that I had wanted because I was so concerned that I forget to get Mel’s things. The last time I forgot her things she would not help me out of bed for days and I was stuck until the kids helped me out. It was quite traumatic so I try not to forget her stuff. I am actually surprised at how tired I am today, I have no fever which is nice but I am tired. It may be because this morning I spent all of my energy running around before eating. It may have been the wrong choice now that I think of it. Mel will be abandoning her family tomorrow at 4pm and will be back on Tuesday evening. Tomorrow Xavier has hockey and Mel said that she will take him and get the groceries that I had missed for myself.
When we have get togethers it is great the amount of help that we get. My parents brought appetizers and Mel’s parents brought some veggies and picked up some of the desserts. Deep fried wontons and chicken balls are always a hit, but they do not always want to make them because they think people will get tired of them. Most people get them only once every 3 months at our place so it is always a novelty. My dad still insists on trying out new things and they are hit or miss. The texture of the shrimp wontons are too much and I can not eat it. We ordered 6 pizzas for dinner for 16 adults, 2 kids and myself because Mel thinks that most adults will eat 3 slices each. We now have 2 full pizzas for left overs. I took one bite and I could not eat anymore. I need the crust super crispy in order for me to eat it. I will make some tomorrow that I can digest. I sat out in the coffee area for a large portion of the party but it made me quite tired and cold. I went back to our room but with the AC on, going into the tundra of our bedroom was not pleasant, so Mel set up the heaters around my bed. The neuropathy is much better, fatigue is better, tiredness from overexertion still exists and my temperature has been stable. After a nap Mel asked me if I wanted some pumpkin pie and tuxedo cake and then forgot about me. She eventually came back and I realized I can not eat the pumpkin pie. My parents killed it with over gingering food for me and I can not eat it now. The cake was ok and I ate that. I am going to need to eat at some point though as I have not had much to eat today. I will revert to bone broth with eggs.
Saturday nights after treatment are extremely rough it seems. I am exhausted to the bone and moving around has become a bit of a chore again where I need to consciously be aware of my energy levels before I move. If Xavier has late games on Saturday then it is possible that I can not attend, or I need to really monitor and manage my energy during the day if I plan on expending my energy at the game afterwards. I feel it mostly in my legs at the moment, probably because I use them to walk. If I had mastered hand stands I could have tested this theory out a bit more but at the moment I think that I am too weak to do that. As I sit and rest the sensation is like of energy flowing out of my body. I am motionless but it feels like energy is seeping out of my feet and hands. My temperature is stable and if it increases we know that we will most likely not go to the hospital. My body is not aching, nor is there any sensation of pain, only a drainage of energy. Lying down in the bed helps when I am under all of my sheets and with heaters on me. I am not sure if the sensation is related to my body trying to warm up my extremities as they are quite cold. I am not sure if I will be able to survive the winters in this house if we can not increase the temperature. Maybe I will sleep in my office where I can keep it a toasty 28 degrees. Today has been a good day to understand the impact of this new drug. It is much better so far than the last one but I still do not like it.
Q