Well.. it's been a while. As someone who blogged consistently from 2011-2021, I feel like a fish out of water sitting here typing this post. I've sat down to write this many times, and before I could finish I'd hit "delete draft." My heart wasn't in it, and because of that the quality of my writing was best described as "slop." I've since gone back and forth in my head on how to start this, because it's a long overdo explanation on my absence. It's an absence that was supposed to be temporary, but which quickly spiraled into what could only be put into words as writing paralysis. When I tried to come back to this blog I found my once rapid firing brain just staring at a screen for hours without being able to produce any tangible work. Each time I would close my computer and walk away, but today I'm pushing past all of that because I owe every single reader an explanation.
I made a promise very early on to never abandon Lyme patients. I've seen it happen many times when a blogger got well and essentially vanished into thin air; and everyone who followed them was left wondering what happened? How did they get well? Where did they go? I read the comments on their posts and saw the hurt first hand from patients who felt abandoned. I told myself "I could never do that!" And in most ways I kept my word; I've always continued advocacy via podcasts, awareness events, IG stories, interviews, yearly Lyme merch collabs with the Lymelight Foundation & more. Those things never stopped, not for a single second. But what did stop was my blog, and sharing my voice in a written medium. And there's a reason for that, or rather I should say a whole sea of reasons. In order to tell this story I need to jump back in time and paint a personal picture of my life throughout the years, in hopes of giving you a glimpse into the inner workings of my paralyzed mind.
For those of you who are long time readers you will know what my life looked like from 2012 onward. In January of 2012 I moved home to receive treatment for Neurological Lyme Disease. I became bed-bound and stayed that way for a solid 8 years. What do I mean by bed-bound? Everyone has a different version of what this means; to some it strictly means never leaving the bed such as someone who is in a coma and cannot do so. But for me it looked like this: in a year of 365 days I spent all 365 in bed except to walk a few steps to use my bathroom. I ate every single meal in bed with my legs propped up because it's the only way I could eat with POTS. I showered once a week with assistance, which looked like me taking a quick body shower and my mom washing my hair in a hair washing station like what you see at salons because I could not handle the heat or energy requirements of a full shower. On weeks when even a body shower was impossible my mom gave me sponge baths. I relied on Home Health nursing for my medical needs, and my two parents became full time caregivers. You may be asking, "did you ever leave your bed otherwise?" Yes, on rare occasions, and at great expense. Things like walking down the stairs to sit on the couch was a special day that happened maybe once a week for 10 mins if I was lucky. Walking to the mailbox and back was extremely rare but did happen during certain phases of treatment. And sometimes I would go out on my porch to sit under the shade, and this was a huge deal too.
The biggest deals though were holidays - oh man, this was my Achilles heel. I refused to give up any holiday in the beginning, and at the same time I was about 80lbs, emaciated, weak, and in so much pain. But I LOVED holidays, so I'd muster all my strength to "celebrate" it. Let's use Mother's Day as an example; it would take me exactly 2 days to get ready for any holiday I planned to partake in. On day 1 I would shower and have my mom wash my hair. This took all of my energy for the day, so we stopped there. On day 2 my mom would help get my outfit, do my hair, and my makeup. She would also cook dinner (more on that later), and I'd spend the entire day otherwise resting and HEAVILY medicating. Around dinner time my parents would eat, but I wouldn't be able to join because I couldn't eat at a table due to my POTS. Once they finished eating we had a short 20 min window to celebrate and it was a well oiled machine. I'm talking 20 mins flat from the moment I made it downstairs, to opening all gifts, to taking photos, a cake (if the celebration called for it), and getting me back to bed. My energy window was small, and I had to time it just right. After that I would rest to recover, and if I was lucky I would eat dinner later in bed, but most of the time it was too much for my body. After any holiday like this I'd spend the next week paying dearly for pushing my body past its limits. Holidays were my only sense of normalcy, so I told myself if I got a photo and I looked okay in it then I was okay. It was my way of coping, my way of not giving into my reality. As the years went on unfortunately I would go on to miss many holidays entirely, celebrate some late, and sometimes lump together 4 in one (Mother's Day, Father's Day & both my parents bdays).
The only other time I would leave my house was to go exactly 1 mile to my local hospital to see my doc, get CT scans, ultrasounds, MRI's, emergency visits, etc. So yes, when I say bed-bound I mean that 99.9999% of my 365 days was in bed. But I did on occasion (depending on the year, more or less) get out of bed with lots of help for various reasons, and later pay the price. It was a negotiation game with my weak body, and at the end of the day I was chained to my bed for 8 years with no real hope in sight.
My two parents were my life source. They did everything for me during those 8 years, as well as the following 2 years of being still house bound (though less bed bound) while rebuilding my strength.
In 2020 I started my climb out of bed-bound living, and this year on a whole I'd say I spent 70% of my days in bed. Therefore I categorize this year as "house bound" and not strictly bed bound. The 30% consisted mostly of more time outside on my patio (usually reading a book in the shade), more walks, occasional movie nights on the couch, baking, showers more often with sometimes washing my own hair etc. It also included the first times I was able to eat dinner on the patio with my parents! This was a rare occurrence, but that summer I could watch my dad grill out and eat dinner with my parents on some occasions, and it was the biggest and most precious blessing. Was I still quite sick? Yes, 100% yes. I was still in treatment, I was slowly gaining weight, slowly progressing on PT, and still depended on my parents to cook every single meal for me, do my laundry, help me with my med schedule, etc. My mind was sharp, but my body was lagging behind.
Then 2021 came, and my worst nightmare happened. I lost my dad, very very suddenly. One moment he was fine, and the next he wasn't. I have a longer more detailed post about this on my blog, but I was the only person at home trying desperately to save him. Unfortunately my efforts were fruitless, and I had to watch as he left this earth. What followed in that year was like a long slow motion horror movie. I had PTSD that would haunt me every waking second of the day, and on top of that I lost my lifeline. You see, while both my parents gave up everything to care for me, my mom had to work to pay for my treatments, so it was my dad was who stayed at home with me 24/7. I depended on him so much; he was my morning wake up call, and my all day companion and help. And suddenly, poof, he was gone. I had to step up to the plate very quickly in many areas of my life, whether I was ready or not. I feared that I'd relapse, I feared that I'd lose my job (it was new and I was remote at the time), and I battled those fears while dealing with intense trauma. My brother immediately flew home for a few months to step into my dad's roles because my mom had to go back to work. Together with my brother we had to learn how to manage a household (my dad did SO much to keep the house and me running), while interviewing candidates for some help. My brothers presence was temporary until he began grad school so the clock was ticking. I was in intense PTSD therapy, highly medicated, continuing to fight through treatments, trying to keep my head above water with work, and to top off my year my beloved dog Macy almost passed away in October of that year and needed emergency heart surgery. I couldn't take another second of 2021, it was a year I wouldn't wish on my worst enemy. Needless to say, writing about my health or making heads or tails of my life during this time was absolutely impossible. I planned a 1-2 year hiatus to allow myself to find solid ground, and that's what I worked so hard to do.
By the time 2023 rolled around I was stronger and better than I could have imagined. But in those 2 years I had so much thrown at me at once (more than I can even list), that I found myself at a crossroads. I had a level of health I never thought I could achieve, with an immense fear each day that I'd lose it and it would all go away. A relapse weighed HEAVY on my mind, because I was actively still treating and taking meds. So I feared I'd jinx the only one good thing happening in my life (my health) by discussing it. That sounds silly, but I honestly had imposter syndrome and I couldn't understand how the hell I got to that place despite all I was enduring emotionally. Secondly, I found that as I tried to go back in time and talk about my prior treatments or make blog posts I would relive a lot of medical trauma which I was not ready to tackle since I was still processing my dads passing. All of that combined made 2023 a year where I decided to finally live for me. I began crossing things off my bucket list to make up for lost time. I was living out the dreams that 2016 Christina had while lying in bed wishing for health. It felt like I was living 10 years in 1 - I wanted to experience everything all at once. I was zipping through my list with reckless abandon, in some ways to numb my pain or avoid facing it in the quiet moments. All the while I continued to focus on my physical and mental health.
So what about last year? Last year I said "enough." I pumped the brakes with the pace I was living life and slowed down to prioritize people and relationships. That was a year of healing for me, and I believe it got me to where I am today writing this blog post.
I know I have so much to fill everyone in on. When I stopped blogging I was still climbing out of the depth of Lyme, and now my life looks completely different. I owe many explanations and many blog posts on treatments I did and research I learned. I promise to share how I got better (although in some ways I'm not completely sure), and everything along the way up until now.
To me this post was the hardest part. Because it was the long and complicated post that I feared (and still fear) won't justify my absence. I know I let a lot of people down by disappearing and I'm so sorry. I didn't disappear because I got better and stopped caring, or I got better and life got too busy. I disappeared because life came at me so fast that I couldn't process it, and I couldn't tap into writing when I was hardly hanging on by a thread to exist. Some days I still feel that way, and I grieve my old life. I wrestle with a disdain for this disease along with a wish to go back in time to relive it, just so I could have my dad back. There are many complicated emotions that bounce around in my head on any given day, and I'm simply doing my best.
My promise is to be more active from here on out, and that starts today. May is Lyme disease awareness month, and there's no better time for me to face my fear and step back into this space.
I've missed you all.
Xoxo,
Christina
I made a promise very early on to never abandon Lyme patients. I've seen it happen many times when a blogger got well and essentially vanished into thin air; and everyone who followed them was left wondering what happened? How did they get well? Where did they go? I read the comments on their posts and saw the hurt first hand from patients who felt abandoned. I told myself "I could never do that!" And in most ways I kept my word; I've always continued advocacy via podcasts, awareness events, IG stories, interviews, yearly Lyme merch collabs with the Lymelight Foundation & more. Those things never stopped, not for a single second. But what did stop was my blog, and sharing my voice in a written medium. And there's a reason for that, or rather I should say a whole sea of reasons. In order to tell this story I need to jump back in time and paint a personal picture of my life throughout the years, in hopes of giving you a glimpse into the inner workings of my paralyzed mind.
For those of you who are long time readers you will know what my life looked like from 2012 onward. In January of 2012 I moved home to receive treatment for Neurological Lyme Disease. I became bed-bound and stayed that way for a solid 8 years. What do I mean by bed-bound? Everyone has a different version of what this means; to some it strictly means never leaving the bed such as someone who is in a coma and cannot do so. But for me it looked like this: in a year of 365 days I spent all 365 in bed except to walk a few steps to use my bathroom. I ate every single meal in bed with my legs propped up because it's the only way I could eat with POTS. I showered once a week with assistance, which looked like me taking a quick body shower and my mom washing my hair in a hair washing station like what you see at salons because I could not handle the heat or energy requirements of a full shower. On weeks when even a body shower was impossible my mom gave me sponge baths. I relied on Home Health nursing for my medical needs, and my two parents became full time caregivers. You may be asking, "did you ever leave your bed otherwise?" Yes, on rare occasions, and at great expense. Things like walking down the stairs to sit on the couch was a special day that happened maybe once a week for 10 mins if I was lucky. Walking to the mailbox and back was extremely rare but did happen during certain phases of treatment. And sometimes I would go out on my porch to sit under the shade, and this was a huge deal too.
The biggest deals though were holidays - oh man, this was my Achilles heel. I refused to give up any holiday in the beginning, and at the same time I was about 80lbs, emaciated, weak, and in so much pain. But I LOVED holidays, so I'd muster all my strength to "celebrate" it. Let's use Mother's Day as an example; it would take me exactly 2 days to get ready for any holiday I planned to partake in. On day 1 I would shower and have my mom wash my hair. This took all of my energy for the day, so we stopped there. On day 2 my mom would help get my outfit, do my hair, and my makeup. She would also cook dinner (more on that later), and I'd spend the entire day otherwise resting and HEAVILY medicating. Around dinner time my parents would eat, but I wouldn't be able to join because I couldn't eat at a table due to my POTS. Once they finished eating we had a short 20 min window to celebrate and it was a well oiled machine. I'm talking 20 mins flat from the moment I made it downstairs, to opening all gifts, to taking photos, a cake (if the celebration called for it), and getting me back to bed. My energy window was small, and I had to time it just right. After that I would rest to recover, and if I was lucky I would eat dinner later in bed, but most of the time it was too much for my body. After any holiday like this I'd spend the next week paying dearly for pushing my body past its limits. Holidays were my only sense of normalcy, so I told myself if I got a photo and I looked okay in it then I was okay. It was my way of coping, my way of not giving into my reality. As the years went on unfortunately I would go on to miss many holidays entirely, celebrate some late, and sometimes lump together 4 in one (Mother's Day, Father's Day & both my parents bdays).
The only other time I would leave my house was to go exactly 1 mile to my local hospital to see my doc, get CT scans, ultrasounds, MRI's, emergency visits, etc. So yes, when I say bed-bound I mean that 99.9999% of my 365 days was in bed. But I did on occasion (depending on the year, more or less) get out of bed with lots of help for various reasons, and later pay the price. It was a negotiation game with my weak body, and at the end of the day I was chained to my bed for 8 years with no real hope in sight.
My two parents were my life source. They did everything for me during those 8 years, as well as the following 2 years of being still house bound (though less bed bound) while rebuilding my strength.
In 2020 I started my climb out of bed-bound living, and this year on a whole I'd say I spent 70% of my days in bed. Therefore I categorize this year as "house bound" and not strictly bed bound. The 30% consisted mostly of more time outside on my patio (usually reading a book in the shade), more walks, occasional movie nights on the couch, baking, showers more often with sometimes washing my own hair etc. It also included the first times I was able to eat dinner on the patio with my parents! This was a rare occurrence, but that summer I could watch my dad grill out and eat dinner with my parents on some occasions, and it was the biggest and most precious blessing. Was I still quite sick? Yes, 100% yes. I was still in treatment, I was slowly gaining weight, slowly progressing on PT, and still depended on my parents to cook every single meal for me, do my laundry, help me with my med schedule, etc. My mind was sharp, but my body was lagging behind.
Then 2021 came, and my worst nightmare happened. I lost my dad, very very suddenly. One moment he was fine, and the next he wasn't. I have a longer more detailed post about this on my blog, but I was the only person at home trying desperately to save him. Unfortunately my efforts were fruitless, and I had to watch as he left this earth. What followed in that year was like a long slow motion horror movie. I had PTSD that would haunt me every waking second of the day, and on top of that I lost my lifeline. You see, while both my parents gave up everything to care for me, my mom had to work to pay for my treatments, so it was my dad was who stayed at home with me 24/7. I depended on him so much; he was my morning wake up call, and my all day companion and help. And suddenly, poof, he was gone. I had to step up to the plate very quickly in many areas of my life, whether I was ready or not. I feared that I'd relapse, I feared that I'd lose my job (it was new and I was remote at the time), and I battled those fears while dealing with intense trauma. My brother immediately flew home for a few months to step into my dad's roles because my mom had to go back to work. Together with my brother we had to learn how to manage a household (my dad did SO much to keep the house and me running), while interviewing candidates for some help. My brothers presence was temporary until he began grad school so the clock was ticking. I was in intense PTSD therapy, highly medicated, continuing to fight through treatments, trying to keep my head above water with work, and to top off my year my beloved dog Macy almost passed away in October of that year and needed emergency heart surgery. I couldn't take another second of 2021, it was a year I wouldn't wish on my worst enemy. Needless to say, writing about my health or making heads or tails of my life during this time was absolutely impossible. I planned a 1-2 year hiatus to allow myself to find solid ground, and that's what I worked so hard to do.
By the time 2023 rolled around I was stronger and better than I could have imagined. But in those 2 years I had so much thrown at me at once (more than I can even list), that I found myself at a crossroads. I had a level of health I never thought I could achieve, with an immense fear each day that I'd lose it and it would all go away. A relapse weighed HEAVY on my mind, because I was actively still treating and taking meds. So I feared I'd jinx the only one good thing happening in my life (my health) by discussing it. That sounds silly, but I honestly had imposter syndrome and I couldn't understand how the hell I got to that place despite all I was enduring emotionally. Secondly, I found that as I tried to go back in time and talk about my prior treatments or make blog posts I would relive a lot of medical trauma which I was not ready to tackle since I was still processing my dads passing. All of that combined made 2023 a year where I decided to finally live for me. I began crossing things off my bucket list to make up for lost time. I was living out the dreams that 2016 Christina had while lying in bed wishing for health. It felt like I was living 10 years in 1 - I wanted to experience everything all at once. I was zipping through my list with reckless abandon, in some ways to numb my pain or avoid facing it in the quiet moments. All the while I continued to focus on my physical and mental health.
So what about last year? Last year I said "enough." I pumped the brakes with the pace I was living life and slowed down to prioritize people and relationships. That was a year of healing for me, and I believe it got me to where I am today writing this blog post.
I know I have so much to fill everyone in on. When I stopped blogging I was still climbing out of the depth of Lyme, and now my life looks completely different. I owe many explanations and many blog posts on treatments I did and research I learned. I promise to share how I got better (although in some ways I'm not completely sure), and everything along the way up until now.
To me this post was the hardest part. Because it was the long and complicated post that I feared (and still fear) won't justify my absence. I know I let a lot of people down by disappearing and I'm so sorry. I didn't disappear because I got better and stopped caring, or I got better and life got too busy. I disappeared because life came at me so fast that I couldn't process it, and I couldn't tap into writing when I was hardly hanging on by a thread to exist. Some days I still feel that way, and I grieve my old life. I wrestle with a disdain for this disease along with a wish to go back in time to relive it, just so I could have my dad back. There are many complicated emotions that bounce around in my head on any given day, and I'm simply doing my best.
My promise is to be more active from here on out, and that starts today. May is Lyme disease awareness month, and there's no better time for me to face my fear and step back into this space.
I've missed you all.
Xoxo,
Christina
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