Where am I now?
Hi there!
So I'm here, and guess what! I'm still sick. Okay, okay not to be a downer or anything, but that's just the truth of the matter. The "chronic" part of being chronically ill just means I will never not be sick. Woo. But that's okay. So, where have I been, you ask? Well just keep reading and you will find out everything from my whereabouts to how I am doing.
Let's start with where I have been. The last year has been full of surprises. My husband and I had the pleasure of moving. Yes, again, but this time hopefully for good. I have changed jobs several times and am now happy to say I am working in a local school and am very happy with the schedule it allows. My husband has also changed jobs so that has been very different for us schedule wise.
I had the opportunity to be a part of a dance company, and thankfully my body cooperated too! It was nice getting back into dance, but extremely scary to figure out my limits since being diagnosed. I thankfully had such an amazing dance family who was so incredibly supportive and understanding as I really rediscovered this part of my life and learned how to balance it with my spondylitis.
That brings me to my spondylitis. I am still classified as Undifferentiated Spondyloarthropathy. I took a huge leap of faith the beginning of last year and went off my infusion therapy treatments. It has been quite a ride. I have been able to manage my spondy with essential oil support and pain relievers. Unfortunately, I have had a few more flares than I did when I was on treatments, but each time, was able to regain control of my pain and inflammation. I find myself living a little more free without the treatments. I'm not on this "every eight week" schedule, which is almost empowering. It makes me feel more normal and can sometimes even put my condition in the back of my mind. That being said, I sometimes find myself forgetting I am sick, and not taking the precautions I really should, which causes more flares and close calls then I would like. Sometimes it feels like I am living more than one life, one that I am a free little happy person who can do anything, and one that I am sick and in pain and slightly regretting the craziness I pursued while I wasn't in a flare because it sent me into a flare.
So let's talk spoons. (If you have no idea what I am talking about, look into the spoon theory because it can really help in the understanding of the fatigue and overexertion that lots of us who are chronically ill experience.) Lately, I have fortunately felt that I have had more spoons than I did before. Either that, or I am finding ways to use less spoons for certain tasks which allows me more throughout the day. Every once in a while I forget to keep track of my spoons/energy levels and completely crash. You'd think by now I would be really good at knowing when I am running out or borrowing from tomorrows supply, but I am definitely still learning. And it changes depending on the weather. Where I live, there tends to be a lot of wind. And on windy days, I find that if I am doing more outside, then some of my spoons seem to blow away in the wind. But all in all, I still love this spoon theory and how it allows both myself and my husband to check in with my energy. And I find that I have learned myself a lot and have been able to judge more accurately my energy levels.
So I think that about covers it. Where I have been and how I am really am. Some days are still better than others but that is fairly normal. If there is interest, I may make a post soon on an in-depth update on my condition, what it is, how it effects me specifically, etc. If you have questions feel free to comment or email me!
-Nikki De
So I'm here, and guess what! I'm still sick. Okay, okay not to be a downer or anything, but that's just the truth of the matter. The "chronic" part of being chronically ill just means I will never not be sick. Woo. But that's okay. So, where have I been, you ask? Well just keep reading and you will find out everything from my whereabouts to how I am doing.
Let's start with where I have been. The last year has been full of surprises. My husband and I had the pleasure of moving. Yes, again, but this time hopefully for good. I have changed jobs several times and am now happy to say I am working in a local school and am very happy with the schedule it allows. My husband has also changed jobs so that has been very different for us schedule wise.
I had the opportunity to be a part of a dance company, and thankfully my body cooperated too! It was nice getting back into dance, but extremely scary to figure out my limits since being diagnosed. I thankfully had such an amazing dance family who was so incredibly supportive and understanding as I really rediscovered this part of my life and learned how to balance it with my spondylitis.
That brings me to my spondylitis. I am still classified as Undifferentiated Spondyloarthropathy. I took a huge leap of faith the beginning of last year and went off my infusion therapy treatments. It has been quite a ride. I have been able to manage my spondy with essential oil support and pain relievers. Unfortunately, I have had a few more flares than I did when I was on treatments, but each time, was able to regain control of my pain and inflammation. I find myself living a little more free without the treatments. I'm not on this "every eight week" schedule, which is almost empowering. It makes me feel more normal and can sometimes even put my condition in the back of my mind. That being said, I sometimes find myself forgetting I am sick, and not taking the precautions I really should, which causes more flares and close calls then I would like. Sometimes it feels like I am living more than one life, one that I am a free little happy person who can do anything, and one that I am sick and in pain and slightly regretting the craziness I pursued while I wasn't in a flare because it sent me into a flare.
So let's talk spoons. (If you have no idea what I am talking about, look into the spoon theory because it can really help in the understanding of the fatigue and overexertion that lots of us who are chronically ill experience.) Lately, I have fortunately felt that I have had more spoons than I did before. Either that, or I am finding ways to use less spoons for certain tasks which allows me more throughout the day. Every once in a while I forget to keep track of my spoons/energy levels and completely crash. You'd think by now I would be really good at knowing when I am running out or borrowing from tomorrows supply, but I am definitely still learning. And it changes depending on the weather. Where I live, there tends to be a lot of wind. And on windy days, I find that if I am doing more outside, then some of my spoons seem to blow away in the wind. But all in all, I still love this spoon theory and how it allows both myself and my husband to check in with my energy. And I find that I have learned myself a lot and have been able to judge more accurately my energy levels.
So I think that about covers it. Where I have been and how I am really am. Some days are still better than others but that is fairly normal. If there is interest, I may make a post soon on an in-depth update on my condition, what it is, how it effects me specifically, etc. If you have questions feel free to comment or email me!
-Nikki De
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