There are so many times where I’d like to leave MS out of the picture. This is a perfect example. I’d love to give you a play by play of my days as a jewelry designer. Just that. Without any baggage or boring health issues weighing in. As much as I wish I could, I can’t. It plays heavily into my work schedule and dictates what I can and cannot do on any given day.
Having Multiple Sclerosis means my days are rarely the same. It’s not that all days are bad days, it’s more the adjustments that I have to make day to day. On my best days, I’m at my bench working with metal. Unfortunately I don’t get as many of those days as I would like, but I sure enjoy the ones I do get. Sitting at my bench means sitting up straight with my feet flat on the ground, many days my torso is too weak to do this. It means that the numbness in my hands must be minimal and it also means having the upper body strength to hold a steady flame and be able to work with my planishing hammer. On days I’m able to do this, I take full advantage. I’ve been known to spend 16 hours at my bench! Yeah, Yeah…with MS I shouldn’t over do it. Those thoughts go straight out the window on bench days!! I never regret bench days regardless of how much I pay for it.
Before I fall asleep each night (or early in the morning!) I make a list of all of the things that need to be done the following day. Usually this means carrying over a couple things that I wasn’t able to do from the day before. I prefer to get orders out the door. My brain needs a clean slate. I always try to make every effort possible to keep cognitive symptoms at bay. Having orders sitting around needing to be shipped makes it impossible to be creative and think of new design ideas.
Once orders are shipped and I’ve got a good handle on any custom orders, I can do what I love! I can be free to experiment and simply create. On great days, you know what that means. Bench work! On the average day, it usually means working with wire and gemstones. This work is usually done from my couch with a couple Chihuahua’s at my side and a Pit Bull at my feet! It really is my favorite place in the world. My favorite creatures surrounding me, a playlist going on Spotify (usually the Rolling stones or some really bad country that my husband hates) and my table covered in a colorful mess of gemstones and precious metal. This is a place where MS can take a back seat. I can just be. I can do what I love and forget for at least a couple of hours that I even have a chronic illness.
It’s inevitable that fatigue will strike at some point. I hate it! I despise fatigue and how it comes out of nowhere. One moment I feel great and the next a flood of weakness washes over me. It’s as if I somehow got the flu in a matter of seconds. These moments I’m always left trying to decide if I want to make it up to my bed or just crash right where I am. I usually choose right where I am because that means a nap cuddled up with my dogs. Fatigue sucks. Sorry, it does. It’s incredibly frustrating. I can do everything right and it will still happen. I can get the perfect amount of sleep and even eat healthy and it still doesn’t keep it at bay. Sometimes a quick rest is all I need, other times it means I don’t get back up for the day. It really just depends.
I don’t mean for it to sound as if I’m bitter and angry. I’m not. It just is what it is. These days I try to look at my life in hours as opposed to days and fatigue is a big reason. A bad day says that the entire day is bad. I don’t think that’s the best way to describe it. It really is more accurate to say I have bad hours. It also helps me to remain positive. Bad hours seem far less depressing than bad days. So for now I refrain from saying “I had a bad day”. I’ll just continue to create and enjoy my good hours and hope for less bad hours the next day.