If you want to hear more of the story of my 6 years of chronic illness then you should check out my Vlog playlist "Lyme Diaries" (<-click to watch.) I talk all about my health journey, I talk about what my illnesses are, what it feels like to be sick, and I even share some of Alex's story too.
In my last post I also said that in my next post (this post) I'd talk more about how 6 years of chronic illness has effected me, so that's what we're doing here today!
Every year of this 6 years of being sick has been so vastly different on every level - physical, mental, emotional, spiritual, etc. Like I said in my last post, the only real consistent thing about the last 6 years of my life is how inconsistent everything has been. Everything is always changing, but I guess thats just life huh? Nothing ever stays the same for long. Thankfully though that's how the world and nature is designed, it's supposed to change. Look at the seasons for example, look at how different summer and winter are, or spring and fall, but look at how nature just adapts and moves with the changes and not against it.
A huge thing I've learned over the past 6 years and gotten pretty good at is to not fight change. "Why stress about things you can't control?" That's something I've always said. I've learned to adapt, and thankfully I'm actually learning how to thrive in my quickly ever-changing life.
But even though I've come so far and now am a good 80% better (which is the best I've done in, 6 years), I still have my moments of struggle. About a week before the official 6 year anniversary, I completely fell apart. After 6 years I've noticed that I do have some patterns, and one pattern is that I always break down around the anniversary of when I got sick. So I fully knew I was going to have a breakdown, I expected that much, but every year it's so different, so I never know when exactly my breakdown will be or how it will effect me.
I thought that since I'm doing so much better and I'm so much happier that I would breeze though the anniversary this year! But I thought wrong. Sadly, it hurt more than ever this year. It seems like every year the pain of everything I've lost only has just gotten more and more painful.
I was disappointed that it hurt so badly and that I had to re-greive over everything all over again, and not only was I grieving all of my own pain and losses, but I felt the guilt of having my family go through so much too, and I grieved the loss of Alex too. I kept wondering why her? Why me? Why did she die even though she'd only been diagnosed for a year, but I've been sick for all these years and I'm the one who lived?
Playing the guessing game of "why" or "what if" never goes well, and spoiler alert, you never get those questions answered. Sometimes we simply just don't get to know "why." But even though I already know that I won't have those questions answered, I still found myself asking those questions anyway...
I cried, a lot, and I let myself go through the whole rainbow of emotions because another thing I've learned in the last 6 years is that emotions will always be felt, and tears will always eventually be cried. You can wall yourself up, and hold it all in all you want, but eventually you will feel it all because emotions demand to be felt and you will go through the 7 stages of greif at one point or another. I learned those lessons the hard way too.
But I think the reason the anniversary hurts more each year has a lot to do with the fact that I'm still in this fight after 6 whole years. Yes, I'm in remission. Yes, I'm 80% better and still steadily improving. Those are both incredible things that I'm SO grateful for too! But I work very hard at my healing every day and it's a delicate balance that I've just gotten very good at, I'm still limited and held back, and I'm not healthy or back to living a "normal" life. This time of year always makes me very acutely aware of all of the things I'm unable to do too.
For example:
-Over summer everyone travels and posts pictures of the amazing places they go to. I used to be like that, I was that person who traveled and I loved photographing my travels. But I haven't been able to fly for 6 years, and later this month I'll be going on my first real vacation in 6 years. (I'm going to Newport Beach, CA for a week with my boyfriend.)
-People go to concerts, parties, events, adventures, road trips, and all sorts of things and I used to live like that, but I just can't anymore, not with my health as fragile as it still is. (I was able to go to 2 concerts this summer, but I used to go to TONS, and I miss that.)
Playing the guessing game of "why" or "what if" never goes well, and spoiler alert, you never get those questions answered. Sometimes we simply just don't get to know "why." But even though I already know that I won't have those questions answered, I still found myself asking those questions anyway...
I cried, a lot, and I let myself go through the whole rainbow of emotions because another thing I've learned in the last 6 years is that emotions will always be felt, and tears will always eventually be cried. You can wall yourself up, and hold it all in all you want, but eventually you will feel it all because emotions demand to be felt and you will go through the 7 stages of greif at one point or another. I learned those lessons the hard way too.
But I think the reason the anniversary hurts more each year has a lot to do with the fact that I'm still in this fight after 6 whole years. Yes, I'm in remission. Yes, I'm 80% better and still steadily improving. Those are both incredible things that I'm SO grateful for too! But I work very hard at my healing every day and it's a delicate balance that I've just gotten very good at, I'm still limited and held back, and I'm not healthy or back to living a "normal" life. This time of year always makes me very acutely aware of all of the things I'm unable to do too.
For example:
-Over summer everyone travels and posts pictures of the amazing places they go to. I used to be like that, I was that person who traveled and I loved photographing my travels. But I haven't been able to fly for 6 years, and later this month I'll be going on my first real vacation in 6 years. (I'm going to Newport Beach, CA for a week with my boyfriend.)
-People go to concerts, parties, events, adventures, road trips, and all sorts of things and I used to live like that, but I just can't anymore, not with my health as fragile as it still is. (I was able to go to 2 concerts this summer, but I used to go to TONS, and I miss that.)
-Everyone is going back to school currently, and I can't go to school still. I did independent studies all through high school, and I had to drop out of college 2 years ago because my health tanked and I almost died...again!
-Lots of people my age have jobs too, and I can't work.
-I don't drive because I haven't been healthy enough. I'm just now at a point where I can start leaning.
-People my age are even starting to have kids and start families and that absolutely is something I want, and even that I can't do because my body isn't healthy enough to create or carry a child, and for sure I don't have the energy to raise or financially support a child on my on either!
I see so many people doing things I've been wanting to do for years, and I see myself in what feels like the exact same place, and it sucks! Plain and simple! It sucks!
The only people I know who truly understand how difficult and triggering certain times of year are, are other chronically ill people. It's just tough, and sadly a lot of people don't even understand why you're sad. From their perspective they don't think you're missing out on much, and I've had so many people tell me to "just move on, leave the past in the past."
It's not that simple.
I've been sick (which by the way has at times been excruciatingly painful, on every level) and my life has been abruptly halted for 6 years of my life. 6 YEARS!
To put that in perspective for you, I got sick when I was 14, and I am now 20.
6 years total - which hasn't been a walk in the park! It's consumed of being house bound, with head to toe pain, plus neurological symptoms like depression and panic attacks, I had no friends (for most of it), and as we just talked about, I've been extremely limited in what I can do. Ya know... just to list some of it.
6 years of that.
6 years out of my 20.
6/20 = 3/10 = 30%
30% of my life I've spent sick.
One third of my life!
This has literally consumed and taken up one third of the life I've lived thus far, and not just that, it's almost killed me on a few occasions!
It's. Been. Hard.
And sometimes you just have to re-grieve all of the hard times you've faced.
Don't get me wrong, I am extremely grateful for my progress, that I'm so much healthier, that I'm doing more than I've been able to do in 6 years, and that I'm genuinely the happiest and most myself I've been maybe ever. But I want more than this, and by that I mean that I don't want to be held back by an illness! I don't want to feel like I'm stuck on the sidelines just watching life go by! I want to live.
To clarify farther, I don't want to go out and be wild and reckless. I just want to live without walls being in my way. I want to go out and do things and have fun and not have to constantly worry or stress if something is going to bottom out my health all the way back down to zero. I want to make a life for myself. I want to be able to live on my own. I want to have a family. I want to be healthy enough to do these things and even just to be able to do simple things like going to the grocery store on my own! It's not all big things that I'm unable to do, there are still simple little daily life things that I'm unable to do, or that I need help doing.
I was born a strong independent woman, and I want to be able to stand on my own two feet!
During the breakdown, my vision was 6/20. - I could only focus on the hard and painful truth that I've been sick for a 3rd of my life. I saw struggle, and pain, and what felt like failure after failure.
Post breakdown, my vision is 20/20. - I now am focusing on the fact that it is a straight up miracle that I'm alive, and that I'm incredibly blessed to have lived 20 years with all the highs and the lows too. I see strength, determination, a plethora of successes, and bounds of growth on every level of my being.
A breakdown will make you re-live your lowest lows, and yes that sucks, but once you rise again you can move forward with so much more perspective about how far you've come because you get to re-live all your highest highs.
-Lots of people my age have jobs too, and I can't work.
-I don't drive because I haven't been healthy enough. I'm just now at a point where I can start leaning.
-People my age are even starting to have kids and start families and that absolutely is something I want, and even that I can't do because my body isn't healthy enough to create or carry a child, and for sure I don't have the energy to raise or financially support a child on my on either!
I see so many people doing things I've been wanting to do for years, and I see myself in what feels like the exact same place, and it sucks! Plain and simple! It sucks!
The only people I know who truly understand how difficult and triggering certain times of year are, are other chronically ill people. It's just tough, and sadly a lot of people don't even understand why you're sad. From their perspective they don't think you're missing out on much, and I've had so many people tell me to "just move on, leave the past in the past."
It's not that simple.
I've been sick (which by the way has at times been excruciatingly painful, on every level) and my life has been abruptly halted for 6 years of my life. 6 YEARS!
To put that in perspective for you, I got sick when I was 14, and I am now 20.
6 years total - which hasn't been a walk in the park! It's consumed of being house bound, with head to toe pain, plus neurological symptoms like depression and panic attacks, I had no friends (for most of it), and as we just talked about, I've been extremely limited in what I can do. Ya know... just to list some of it.
6 years of that.
6 years out of my 20.
6/20 = 3/10 = 30%
30% of my life I've spent sick.
One third of my life!
This has literally consumed and taken up one third of the life I've lived thus far, and not just that, it's almost killed me on a few occasions!
It's. Been. Hard.
And sometimes you just have to re-grieve all of the hard times you've faced.
Don't get me wrong, I am extremely grateful for my progress, that I'm so much healthier, that I'm doing more than I've been able to do in 6 years, and that I'm genuinely the happiest and most myself I've been maybe ever. But I want more than this, and by that I mean that I don't want to be held back by an illness! I don't want to feel like I'm stuck on the sidelines just watching life go by! I want to live.
To clarify farther, I don't want to go out and be wild and reckless. I just want to live without walls being in my way. I want to go out and do things and have fun and not have to constantly worry or stress if something is going to bottom out my health all the way back down to zero. I want to make a life for myself. I want to be able to live on my own. I want to have a family. I want to be healthy enough to do these things and even just to be able to do simple things like going to the grocery store on my own! It's not all big things that I'm unable to do, there are still simple little daily life things that I'm unable to do, or that I need help doing.
I was born a strong independent woman, and I want to be able to stand on my own two feet!
During the breakdown, my vision was 6/20. - I could only focus on the hard and painful truth that I've been sick for a 3rd of my life. I saw struggle, and pain, and what felt like failure after failure.
Post breakdown, my vision is 20/20. - I now am focusing on the fact that it is a straight up miracle that I'm alive, and that I'm incredibly blessed to have lived 20 years with all the highs and the lows too. I see strength, determination, a plethora of successes, and bounds of growth on every level of my being.
A breakdown will make you re-live your lowest lows, and yes that sucks, but once you rise again you can move forward with so much more perspective about how far you've come because you get to re-live all your highest highs.
I have been on such a long, tough journey, and there are not enough words for me to express how grateful I'm am for everything I've learned along the way. Yes, I've lost a lot, but I gained so much that I never would've had unless my life took this detour. I've met amazing people, I've helped amazing people, I found my purpose in life, I found faith and hope, I found love, I found...me.
I'm truly, genuinely, deeply happy with where I am right now!
For the first time in my life I learned how to be happy with where I am right now, to live in the moment and enjoy today for what it is without thinking of the past or the future. But I also allow myself to feel emotions and I don't beat myself if I do feel sad about the past or if I worry about the future. I do my best every single day, and I'm happy with that.
And yet, even with all of that, I still know how to dream and hope for even better days, and I have faith that they surely do lie ahead!
I found balance.
I don't know when exactly this detour will be over and a more "normal" life will resume, but until then, I'll do my best to enjoy the ride, enjoy the scenic route, to keep learning, and I most definitely will be counting my blessings.
I'm truly, genuinely, deeply happy with where I am right now!
For the first time in my life I learned how to be happy with where I am right now, to live in the moment and enjoy today for what it is without thinking of the past or the future. But I also allow myself to feel emotions and I don't beat myself if I do feel sad about the past or if I worry about the future. I do my best every single day, and I'm happy with that.
And yet, even with all of that, I still know how to dream and hope for even better days, and I have faith that they surely do lie ahead!
I found balance.
I don't know when exactly this detour will be over and a more "normal" life will resume, but until then, I'll do my best to enjoy the ride, enjoy the scenic route, to keep learning, and I most definitely will be counting my blessings.
The moral of the story and the message of all of this is to allow yourself to feel highs and lows without guilt or shame or beating yourself up. You're human. You feel. It's okay to not be okay sometimes, and it's also okay to be super happy and confident and proud at other times. Life just has it's ups and downs, but life is designed and meant to change, and so are we.
Don't fight the waves of change, ride them. 🏄
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