Just like that, the holidays are over, just like they always are! It seems like we prepare and wait forever, and then BOOM, gone! I thoroughly enjoyed them, but I also am going to enjoy slowing my pace down... and with slower pace, comes more writing... hopefully :)
Last night sucked... Point blank. Being "new" to this disease, I am really trying to pinpoint triggers. To no avail, I haven't figured that out yet.. I am hoping that it can be something as simple as food that can send my body into some disarray. But between last night and the night before, I ate the same exact thing, except last night I removed any gluten. For whatever reason, my body went into a tail spin around 7 o’clock. It was almost instant. I felt like I had been hit by a truck... my joints and muscles in my hands and arms were hurting. My body just felt in pain, and I felt like I had not slept in years. I laid in bed until after 2 am... fell asleep sometime until after 3 am... then, I toss and turned. Luckily, my husband came home from work and I was able to get another hour or so of sleep in. I still feel sore and exhausted, but the day must go on! I just truly wish I could identify a pattern. Or, is this what is going to happen? Will this disease hit in random spurts with no clue as to when it is going to be better or worse? To fully relinquish control like that is something that gives me painful anxiety. I’ve come to terms that some things in life are plainly out of my control, no matter what I do. But to have parts of my health be very whimsical, I hope this isn’t true... I still have the Plaquenil medication that my rheumatologist gave me. I wanted to try to do this without it. I’m still going to try this month without it, but I think I may need to give it a try.. I need to remind myself that if one medication coupled with what I’m already doing is what’s going to help me... then That. Is. Okay.... It is all going to be okay.
I just started diving into Instagram the other day. I really didn’t understand the purpose, but my stepdaughter wanted me to get on there, so I figured I’d give it a shot. My friend had to explain to me that there are many ”hashtags” to follow. And she wasn’t kidding!! #sjogrenssyndrome #sjogrensawareness #autoimmunediseases So many!! And so much information to read and many people to follow. As I’ve been looking though, I’ve come across a common hashtag that made me ask myself “What the heck?!” #spoonies ... Spoonies? Like... someone that likes to “spoon” in bed? Nope. Can’t make sense 😂😂 I started searching, and I came across the graphic above! Also, here is a great resource that explains this.... https://patientsrising.org/what-is-spoonie/
To explain in short form, a woman wanted to explain to her friends and family what it is like to live with a chronic illness... an illness that is most of the time invisible to the normal, day-to-day person. How can you be sick when you don’t look sick? She laid out a handful of spoons on the table. These represented her energy (or the energy of those with chronic illnesses) for the day. Any task, no matter how simple it seemed (going to the grocery store, getting dressed, taking the kids to school, etc) used up a portion of energy for the day, representing anywhere from 1-4 spoons based on the task. The summary is this... if you use up all your spoons for the day, you have two choices. You can ”borrow” from your spoons tomorrow. Borrowing from tomorrow will have consequences. Tomorrow may plain out suck. You may be just dead exhausted You may be in pain. Your body will take over no matter what your mind is telling you to do. Now, if you run out of spoons for that day or get close to it, you can make another decision. Rest. Realize your body needs it. Take a break. Put a task aside until tomorrow.
I thought that this “spoon” theory was truly an amazing thing. Odd at first, but amazing when I started reading through it. It is much easier to see a tangible explanation for a disease or condition. And, I need to learn something from this. Instead of just being able to explain to others better, I need to continue to tell myself it’s okay to rest. This isn’t a natural thing for me. I don’t rest much. I go, go, go! That’s just me. But, resting will allow myself to be more productive. I won’t run myself into the ground. It. Is. Okay. To. Rest.
I know this has been a long one, but I had to add this last thing in... I love hummingbirds. I came across a podcast called Sjögren’s Strong (https://sjogrensstrong.com). Their logo has a hummingbird in it. I couldn’t help but think this couldn’t be a coincidence in my life. A little about me, I absolutely love hummingbirds. Something about how beautiful they are, and how they are so tiny but mighty! I’ve read the hummingbirds typically beat their wings around 50-70 times per second. Their heart rate can be over 1,200 beats per minute.... I can go into a lecture on hummingbirds 😂, but I will stop right there. My favorite thing about spring is looking forward to these beauties, and I’ve begun to think how they sure are a lot like us with Sjögren’s Syndrome. You can only imagine how much energy a hummingbird uses on a daily basis. They have to eat extremely often in order to stay alive. When they sleep, they almost go into a comatose state in order to get a full rest. They need to stop. They need to quit moving for just some time. Some days take a lot of energy out of me. It feels like I’m burning through my energy stash (or my spoons) quicker some days than others. Just like the hummingbird, I need to force myself to take mini breaks throughout the day. Just as the hummingbird perches on a waving tree branch or the swing I purchased for him, I must also take a rest. Taking a rest will keep me going. And sometimes, like a hummingbird, that rest may need to be much deeper than others... a much longer night’s sleep than the rest.
I can not wait for spring. It may sound weird, but I feel even more connected with these birds than I did before this diagnosis. Not only are they beautiful and fascinating to me, they are a symbol for me for the rest of my life. 💕
Make it a great day!
-Stefanie-
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