When it starts, I know because my hands stop working. I drop things, have trouble gripping objects correctly, and find that tasks like typing become challenging. It's as if my hands are absolutely drunk. If I start to lose my vision, I know I'm all in; I'm flaring up again.
Although so much of my life is impacted by chronic illness, it's a topic I tend not to address much. Unless I'm having a flare up, and feel the need to notify you because I'll have to break a commitment, chances are I've never told you that I have MS or Fibromyalgia.
When I saw the writing prompts in the Weekend Experiences community for this week, I danced around writing about the weekends I've spent in bed. They are certainly numerous. It feels too depressing, too vulnerable to talk about though.
I don't want to make people depressed! Then I think on all of the times that I've read about other people's circumstances and felt less alone in the world. How other moms venting made me realize there was nothing wrong with me, or how other people talking about panic attacks helped me identify what I was experiencing...
Sometimes it's important to talk about the not so cool things, so here goes.
I took this photo in Wisconsin last year, while visiting a dear friend who also lives with an autoimmune disease. It's wonderful to have pals who understand the things you are experiencing. With chronic illness, it is often hard to connect with the people in your life.
How do you explain that all of your thoughts are foggy? That you wanted to get something done, but someone called you and now you don't have the energy. Or that you really did want to attend an event, but you woke up feeling like your entire body was bruised?
When you have an autoimmune disease, you're not just dealing with a body that won't work correctly. You're humbled in an additional way, people will tend to think you're a jerk/ don't care/ lazy if they don't understand what you're going through.
When I saw this graffiti, it resonated with the part of me that feels entirely defeated by all this.
There's no benefit in sulking over the hand you've been dealt though. The same friend I mentioned above made me realize that adjusting to fluctuating capabilities doesn't have to be all misery. I have a habit of pushing myself too hard, trying to do what I used to be able to before. With some wise words from a friend, I realized that I needed to enjoy the act of slowing down.
Over the last year I've made a lot of strides towards this. Coloring, journaling, reading, taking a dang nap when I need to... Being kind to myself and accepting my limitations is an ongoing struggle, but these are the things that keep me out of bed. When I flare up, sometimes I can't get out of bed for days, so it's an important thing for me to work on.
I took this photo after some hospital visit or another. The glare that I caught looks like the moon to me... I remember having a profound moment of acceptance right then, and wanted to capture it.
When I flare up, I often just wait it out at home. Most times, I sleep for 12+ hours. Part of this is the extreme fatigue, but it's also because I can't do much else. My eyesight will often get so bad, that I can't stand to watch TV or look at screens of any sort. I'll lay in my dark bedroom and listen to music or sleep, and know that I'll be normal again in a few days.
My last flare up kept me in bed the entire weekend, plus the first half of the following week. Through illness, I've developed more patience and a better understanding of myself. I've also discovered a renewed desire to spread joy, as it seems to be the most effective medicine.
Not everything with chronic illness is depressing. I brainstorm when I can't do anything else, and have come up with a fair few fiction stories that way. I've developed a slew of self-care habits that make my life better. I've become more in tune with my body.
Being humbled by physical limitations has fueled my spiritual growth as well. Staying present in gratitude and focusing on the beautiful things in life is one of the best pain killers for me. When I tap into being connected with the earth around me, and the people in my life, I find bliss.
Battling an autoimmune disease has also led to me becoming a better cook, so I can nurture my body in the most fundamental ways.
This is my take on the popular quick service restaurant chain Chipotle's burrito bowl. It's nothing fancy, but it's a veggie packed meal with some immune boosting ingredients. I take a few hours each week to prep stuff ahead of time to make simple but healthy meals like this.
Lastly, I write to fight against physical and mental pain. Finding Hive has been huge for me over the last year-ish, as it's given me a place to set my thoughts down and connect with awesome people around the globe. All of these things help to keep me well.
So yes, I may have spent a lot of weekends in bed, but I've taken a lot away from that. I'll continue to be kind to myself by practicing good habits, and when all else fails, I'll do my best to be positive.
This is my response to the Weekend Engagement writing topics for this week. I hope everyone is having a fantastic weekend!
Wes & Grindan
