Purple legs are so trendy I know.. on the bright side at least it looks like I kind of have a tan..A moon tan perhaps? Today I got out of bed and walked downstairs...for the first time in 2 weeks! Don't be fooled, my house isn't a mansion or anything where the downstairs quarters are a mile away. Oh no, this is just your regular ole sized house, but my heart has not allowed me to stand up for longer than about 30 seconds before my heart rate goes nuts, my legs turn purple & I have to get vertical ASAP. It makes leaving bed feel like it deserves a gold metal of honor. This last month-ish has been a wild ride, first with the neurological issues (in the post below) & then with some heart issues which came to the surface recently. To summarize on that, my resting heart rate will shoot up to 130 out of nowhere & it comes with a laundry list of other symptoms. Then it will drop down to about 50. I currently have a 14 day Holter monitor on to hopefully provide some answers & I will do a post on that in the coming weeks that's a bit more in depth. I was actually awake for 48 hours at one point from my racing heart & spent a week sleeping 2 hours a day. Then when the exhaustion hit I was alternating coma like sleeps. I went on a Murder, She Wrote binge watching spree during that time, so thank you to Jessica Fletcher for keeping me sane (p.s I know I sound like I'm 80, but nope I'm 27). I've been absent from friends, from my lady of Lyme social media & from life as a whole lately with all of this craziness, but I did want to use this quick moment of clarity to chat about some other things that have been going on in life, and do a bit of a catch up.
This was one happy day in March when I woke up & had the energy and ability to take a short walk and enjoy the sunshine. A great joyful day Today I was lying here and my mind started to wander on the topic of living my best life. And this topic went all over the place in my mind and about how it applies on so many different levels.
For those of you who are familiar with Yolanda Foster, you know that she is a cast member on the Real Housewives of Beverly Hills. This show has a lotttttt of viewers (millions), and Yolanda, being the amazing human being that she is, has been using it as a platform to educate about Lyme disease. She has shared every aspect of her journey, and in turn has made thousands of viewers across the globe feel a little bit less alone. But I digress.. The controversy of practically the entire season was that Yolanda posts "sick selfies" (aka showing the realities of Lyme) on her Instagram, followed later by "happy selfies" (when she's enjoying life). This led to much gossip from the women as to if she's really as ill as she says... Because you know, since she made it to lunch last week she MUST in fact be fine and cured, right? Actually first it led to them complaining that she's posting sick selfies for pity, then it morphed to, "but she looked fine yesterday." A picture says 1,000 words, but those words are interpreted different to everyone who views it. The truth behind a photo can be pain, exhaustion, defeat, sadness, or maybe depression. A smile is a mask, and anyone can plaster it on for a 2 second photo. Of course by now if you read this blog you understand how an invisible illness works, so I'm not here to re-hash that. But rather the fact that "happy selfies" are those moments where we escape. They are the moments where we live our best lives. Shouldn't we all strive to do that? To live our best life possible, despite the pain and limitations? I look for what I can do to bring myself joy despite my restrictions. If I can't get out of bed then dang it I'll color in bed. Maybe I'll paint my nails. Maybe I'll cross stitch or knit. Perhaps I'll work on a craft or read. If I can get out bed for a bit then I will do some photography, perhaps get some fresh air, and I'll love it.
The truth of the matter is that the blow-back which Yolanda receives is merely a lack of understanding. And I wrestle with that as well, because I want to enjoy my best life and shout it from the roof tops, but also not confuse people as to why it "looks" like I am having a blast and simultaneously saying that I can't leave the house or go here or there. It's weird, honestly. All of it is weird, especially finding a way to navigate it all and not feel guilt. I commend Yolanda, because it's a tricky line to walk to stay authentic to yourself.
For those of you who are familiar with Yolanda Foster, you know that she is a cast member on the Real Housewives of Beverly Hills. This show has a lotttttt of viewers (millions), and Yolanda, being the amazing human being that she is, has been using it as a platform to educate about Lyme disease. She has shared every aspect of her journey, and in turn has made thousands of viewers across the globe feel a little bit less alone. But I digress.. The controversy of practically the entire season was that Yolanda posts "sick selfies" (aka showing the realities of Lyme) on her Instagram, followed later by "happy selfies" (when she's enjoying life). This led to much gossip from the women as to if she's really as ill as she says... Because you know, since she made it to lunch last week she MUST in fact be fine and cured, right? Actually first it led to them complaining that she's posting sick selfies for pity, then it morphed to, "but she looked fine yesterday." A picture says 1,000 words, but those words are interpreted different to everyone who views it. The truth behind a photo can be pain, exhaustion, defeat, sadness, or maybe depression. A smile is a mask, and anyone can plaster it on for a 2 second photo. Of course by now if you read this blog you understand how an invisible illness works, so I'm not here to re-hash that. But rather the fact that "happy selfies" are those moments where we escape. They are the moments where we live our best lives. Shouldn't we all strive to do that? To live our best life possible, despite the pain and limitations? I look for what I can do to bring myself joy despite my restrictions. If I can't get out of bed then dang it I'll color in bed. Maybe I'll paint my nails. Maybe I'll cross stitch or knit. Perhaps I'll work on a craft or read. If I can get out bed for a bit then I will do some photography, perhaps get some fresh air, and I'll love it.
The truth of the matter is that the blow-back which Yolanda receives is merely a lack of understanding. And I wrestle with that as well, because I want to enjoy my best life and shout it from the roof tops, but also not confuse people as to why it "looks" like I am having a blast and simultaneously saying that I can't leave the house or go here or there. It's weird, honestly. All of it is weird, especially finding a way to navigate it all and not feel guilt. I commend Yolanda, because it's a tricky line to walk to stay authentic to yourself.
The aftermath... (p.s yes I'm wearing a shirt, it was a cute off shoulder blouse that's covered by my trusty heating pad!) And on this topic I wanted to share the story of my moms birthday, which ties in nicely to this whole conversation.
My mom's birthday was last month & it was a milestone birthday which I spent months planning for. Each detail was carefully chosen, and I had worked little by little on a memory gift from her close friends & family. I tracked down her favorite Hungarian cake, I hand picked a bouquet of 60+ balloons & the icing on the cake was that my brother came home from Texas to surprise her, which was the best moment of all. Having my family under one roof is the epitome of joy for me. Nothing is more precious and nothing gives my soul more fuel. There was one small hiccup though... When this day came I inconveniently was having one of my roughest days of the week. I put my makeup on in hopes that it would pep me up, but it just burnt me out more. I got all dressed up and ready but alas when dinner came around the smell of it made me only more nauseous so I was laid up in bed. I missed out on the whole night until the very end when I rallied for about 20 minutes in order to give my mom her gift. This made my soul happy, although it was a hard fought 20 minutes. But I did it non the less & for a moment I got to forget about how I felt or what I had to do next. This happy moment is the moment I wanted to share, because in my mind it's the moment where I was living my best life. But, shortly after the pretty pictures were taken the exhaustion set in and I plopped in bed feeling defeated, alone & sad as I listened to the voices of my family drifting up the stairs, laughing and chatting... Without me. My best life was followed by a somber and sobering moment. One which I captured for my own journal, but which I shared above (instead of the pretty made up picture). It's amazing that the happiest moments & toughest moments can exist just mere moments apart. But this awareness of that phenomenon only makes me focus on the good that much more, so I can soak up every last bit of it.
So I strive to live my best life, but even though I preach that sentiment, it doesn't mean that it can't sometimes feel like the 'worst life.' It's not, but it can feel that way. And both are my truth. My happy moment where I took a walk & felt so energized and hopeful is my truth, and the sadness that comes with debilitating pain is also my truth. And at the end of the day they're also both a part of my best life. Because 'best life' doesn't mean perfect life. It means MY best on any given day. They won't always be stellar, but I'm along for the ride & I'm not backing down. I won't allow myself to focus on my limitations, but instead I will keep focusing on reaching for the stars. I will continue to share the good & the ugly with all of you, because they both walk hand in hand on this journey. It's not always going to come up roses & that's okay, but it's also not going to bring me down. I encourage anyone who feels alone and overwhelmed not let it steal your ability to live life to the fullest each day. Be your truth & embrace your truth always.
I will live my best life, despite the circumstances.
Xoxo,
Christina
My mom's birthday was last month & it was a milestone birthday which I spent months planning for. Each detail was carefully chosen, and I had worked little by little on a memory gift from her close friends & family. I tracked down her favorite Hungarian cake, I hand picked a bouquet of 60+ balloons & the icing on the cake was that my brother came home from Texas to surprise her, which was the best moment of all. Having my family under one roof is the epitome of joy for me. Nothing is more precious and nothing gives my soul more fuel. There was one small hiccup though... When this day came I inconveniently was having one of my roughest days of the week. I put my makeup on in hopes that it would pep me up, but it just burnt me out more. I got all dressed up and ready but alas when dinner came around the smell of it made me only more nauseous so I was laid up in bed. I missed out on the whole night until the very end when I rallied for about 20 minutes in order to give my mom her gift. This made my soul happy, although it was a hard fought 20 minutes. But I did it non the less & for a moment I got to forget about how I felt or what I had to do next. This happy moment is the moment I wanted to share, because in my mind it's the moment where I was living my best life. But, shortly after the pretty pictures were taken the exhaustion set in and I plopped in bed feeling defeated, alone & sad as I listened to the voices of my family drifting up the stairs, laughing and chatting... Without me. My best life was followed by a somber and sobering moment. One which I captured for my own journal, but which I shared above (instead of the pretty made up picture). It's amazing that the happiest moments & toughest moments can exist just mere moments apart. But this awareness of that phenomenon only makes me focus on the good that much more, so I can soak up every last bit of it.
So I strive to live my best life, but even though I preach that sentiment, it doesn't mean that it can't sometimes feel like the 'worst life.' It's not, but it can feel that way. And both are my truth. My happy moment where I took a walk & felt so energized and hopeful is my truth, and the sadness that comes with debilitating pain is also my truth. And at the end of the day they're also both a part of my best life. Because 'best life' doesn't mean perfect life. It means MY best on any given day. They won't always be stellar, but I'm along for the ride & I'm not backing down. I won't allow myself to focus on my limitations, but instead I will keep focusing on reaching for the stars. I will continue to share the good & the ugly with all of you, because they both walk hand in hand on this journey. It's not always going to come up roses & that's okay, but it's also not going to bring me down. I encourage anyone who feels alone and overwhelmed not let it steal your ability to live life to the fullest each day. Be your truth & embrace your truth always.
I will live my best life, despite the circumstances.
Xoxo,
Christina
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