However if you knew read my blogs or followed my social media it is easy to assume that all I do is sit around having Chiari all day and writing of my sufferings. I hope that is not the way I come across, but a lot of my life has been medically related in the past few years, so it is a big part of my life.
I am sure that I have spent time talking about some of what I do at church, but I also have other things that I enjoy that I suppose I don’t always speak about. Even I have to remember that pulling back the veil also means exposing how I spend time enjoying myself during difficult times and what I do between flareups.
At my laziest, I am watching Gumball on Hulu. Just over and over. At my best I take walks around my neighborhood and take pictures of people’s flowers. I make videos, I play ukulele, I bake cookies. I have a range of interests that is ever expanding as I crave information and knowledge. One I am able to master something (which is almost impossible now, but it happens) I am ready to move forward and learn something new.
I just picked up a unicorn cross stitch project. I have avoided cross stitch and needle point my whole life, and here I am, ready to learn. I have been considering crocheting or knitting again. I know that my fingers aren’t as nimble as they once were, but I will use them until they don’t move. I am thankful for every bit of strength I have left.
Sketching, drawing, and painting have always been activities that I enjoy but I am not that great at. The funny thing is that at this point I understand it is more for my enjoyment because I am not in the business of selling paintings. I can enjoy my ugly paintings.
I have taken to watching Marvel Comic Universe movies and reading DC comic books. Neither have ever been interesting to me, and they still aren’t really, but it gives me something to talk to other people about, so in that sense it is worth every minute I put into it.
Writing has become a necessary part of my life, so I have begun writing a book. Still debating on publishing the one I wrote. I just chaired our Chiari walk and I am plotting and planning, praying to get the right people in my path. I am ready to start taking advocacy to another level and while I know I have a few obstacles to overcome, I know this is where I am supposed to be.
I suppose thinking about it, it is hard to see how all of these things are woven into my life along with the family, church, and so many doctors. However, I encourage you to MAKE the time to do something that you enjoy for at least 30 minutes a day. An hour if you have access to the time. I usually can’t focus for more than an hour or so. If I have a headache, maybe 15 minutes. Always keep something with you that you can do to keep you mind functional during slumps in the day. Some days I just play with my fidget dodecahedron (yes, I am THAT girl) because it requires zero thinking. Other days I get on my 3Ds and play video games. I can do it for about ten minutes before I tire of that!
There are so many options, even listening to audio books and just resting. All of these things are great for helping to get through days that aren’t the best or the worst. I look at what I go through just trying figure out what my brain is doing and I know that other people out there are going through the same or worse with less support or resources than I have. My mission is to figure out how to change that so that people can get through these times with hope and purpose in their lives.