Life with lupus is a weekly column written by Catherine Daniels, a good friend who also has the chronic disease of lupus. It is our hope that through this column, the world can gain a better understanding of life with lupus.
It’s really hard to stay in the moment when you feel so bad. There is no Christmas joy here. Don’t get me wrong I really appreciate my family and roof over our heads, but this is the first Christmas I just don’t feel it. The fact is that my body is extremely achy. There is no money for gifts, no visits and an extremely brief conversation with my father. I feel so bad that I could not be a better daughter, sister and aunt. Not of my own making but nonetheless upsetting.
“It’s really hard to stay in the moment when you feel so bad.” – Catherine on life with lupus.
I have a new fetish: watching video blogs. It’s like living vicariously through others. I don’t know if its strange or not, but I have a strange attraction to Aussies. I really love Australia. It’s so beautiful, just like the people. The Great Barrier Reef is just gorgeous. Watching videos is one thing that I do to take my mind off the hard things. I could wallow in that the holidays are hard. Or I could watch videos.
There are days when I can’t get out of bed, so I have to find things to do while lying down. I have succumbed to the fetish I call youtubeitist (yes I made that up. Don’t judge!!!). I was reading a blog of this 14-year-old girl in Brisbane Australia. I felt so bad for her. At her young age she had lost one her kidneys. She was so brave; I did not even know her but I felt connected to her. She was video blogging from bed and I was blogging from bed. Sort of like kindred souls connected through common ailments.
So I’m back on YouTube and I cannot stop watching a video blog of a couple. Their names are Jamie and Nikki. They are a really cute young couple. I cannot get enough of them. Maybe I envision my life being like theirs. I think I am drawn to happy couples and maybe I can even vibe their youthful karma. They are on my watch list. I’ve been watching them from their very sweet engagement thru their first pregnancy. They are so young and so together. I envision my Lamar with a wife and life like theirs. He however would be to different. But that’s mom talk!
At the end of the day, yes I have Lupus and yes we are without a permanent home. Most days I’m missing my little chubby (our doggy). Things are bad but not the worst. Life feels grim but there is grimmest. So I will look to a better day tomorrow. Thanks for checking out my blog post and I will see you next week.