One of the hardest things after recovering was understanding how to navigate day to day life as an adult, with the responsibilities that come with being an adult, without overwhelming my body. That sounds strange, but let me explain. I was in college when I was sick (getting my undergrad degree, then back for a second degree in fashion), and life was very different then. Even in the 1 year period when I had to quit fashion school due to my health, I was still only working part time and had a lot of help from my parents. I wasn't living a normal adult life balancing a budget, or a busy social calendar, or any kind of work obligations. Most people have that transition period where they get their big girl or big boy job and slowly shift from renting an apartment to owning a home, to getting married, to taking on "real life." I exited life before any of that happened, and at the time when I moved home I had very little responsibility from a worldly perspective (I was busy surviving and finding a diagnosis, but that's different). My part time job was not my sole source of income; it did not require anything extra outside of 15-20 hours a week, and most of my days were spent doing activities with my friends when I could. That's the life I left behind in 2012, and it was not the life I went back to... talk about a culture shock!
During my time bed bound/housebound I was in complete survival mode. I credit my parents for every ounce of why I am here today, because they were my full time care givers who not only fought tirelessly for me, but took on every expense (which was a lotttt). I didn't have a paying job, my only "job" was fighting and waking up each day to keep putting one foot in front of the other. They cooked my meals, they helped me shower, they did my laundry, they made sure I had all my meds, they took care of literally everything. My job was to breathe and survive.
When I recovered from Lyme I was thrust into a lot all at once - as most of you read in my last post I lost my dad suddenly and had to take on a ton of responsibility in a short amount of time. That alone was something I was ill prepared for, then add in a real job which I cared deeply about and devoted all my time to, and bills that began calling my name. Suddenly, all at once, I looked around and realized I was 32/33 and the real world was tough. It's tough for anyone, but for someone who was thrown into this at full speed with a body that was still healing, it was a lot. As I recovered further and left the house for work adventures, life adventures, etc, I continued to take on more and more. I had to learn very quickly how to juggle so many things that needed my attention and energy all at once. Keeping my health a priority was at the top of my list, but suddenly I found that extremely hard to do on top of everything else pulling at me. Days would fly by and I would miss my supplement schedule because I got busy and didn't realize the time. I would forgo my PT because I got wrapped up in work, or forget to reorder my meds. And don't even get me started on realizing the cost of the meds and supplements I was on. Talk about sticker shock! Wow. When I looked at my monthly healthcare expenses I felt sick to my stomach, and started to slowly find ways to pull back and chip away at things I maybe didn't "need" and tested the waters to see how much I could pull back before it was too much. I found myself trying to be social and enjoying life and independence while also feeling drained or like I was overextended and not giving my all to every aspect of my life. In short I had to learn how to manage everything an adult does but in a short period of time with no training wheels and a body that required a lot of TLC. It was hard.
As time went on it didn't get easier. I wish I could say I learned balance, but to be honest I learned the hard way that going 100mph all the time was not something my body could do for long. For a while I kept up the pace of work, my health, personal life, trips, advocacy, finances, donating my time to causes, and filling up my schedule with non-stop activities. I was always busy in some way whether that was juggling my health or something that kept me on the move. In some ways I loved how that felt because it occupied my mind and made me feel like I was succeeding or like I was normal and blending in with society. But ever so slowly, I started to feel the strain of it all. It was probably a year ago (I think, maybe more) when I felt my first big hint that something wasn't right. I noticed symptoms and issues popping up and becoming a problem that wasn't a problem before. I thought to myself, hmm that's odd, but I kept going. Then other symptoms popped up, this time more persistent and louder. I went for my bi-annual work trip to New York last September and my POTS was so bad I honestly did not know how I could make it through. It was brutal. I came back from there and had pneumonia, then covid, then bronchitis, then a collapsed lung, followed by a severe flare up of my asthma. Then the POTS got even worse. Then another cascading list of symptoms, mainly fatigue and daily migraines, and feeling each day that the veil was ever so slowly slipping.
When I went to the beach this summer I finally accepted that I needed more help, because managing the symptoms wasn't enough. I compared my trip to the beach this year to the one the year prior and realized the stark contrast in my energy levels, tolerance to sun, fatigue, and body pain. It was night and day. I knew that if I didn't do something now it would only get worse, because this September I have another big work trip, and if I don't act now I may come back from that 100x worse and risk losing everything I worked so hard for. So, I begrudgingly began Lyme treatment again, and this is where we are today.
I went back to my OG treatment of the DesBio Series Therapy (more info on that here), and taking it one step at a time. As of today I am 1 month in, and some days are easier than others. Being in active treatment brings its own set of challenges, but I am trudging through as best I can. I only left the house once for an activity I had pre-committed to and that was a challenge to get through, but it was also at the peak of herxing from treatment, so the timing was not ideal. But otherwise I have spent every weekend in a bed or on a couch. I haven't so much as went out to dinner, because the strength it takes to get myself up and ready for a meal after a long day of work is nowhere to be found. So I am leaning into rest and resting as much as I can between now and September 4 (when I leave for my work trip). I have learned the fine art of a slower life over the last year, and finding balance between everything calling my name. I have a mind that is so determined and wants to take on everything, but a body that operates best when I am doing the exact opposite. In due time I think I will learn to balance it all better, but for now I am doing my best and taking it one step at a time.
Thank you for being here, and thank you for reading.
xoxo,
Christina
During my time bed bound/housebound I was in complete survival mode. I credit my parents for every ounce of why I am here today, because they were my full time care givers who not only fought tirelessly for me, but took on every expense (which was a lotttt). I didn't have a paying job, my only "job" was fighting and waking up each day to keep putting one foot in front of the other. They cooked my meals, they helped me shower, they did my laundry, they made sure I had all my meds, they took care of literally everything. My job was to breathe and survive.
When I recovered from Lyme I was thrust into a lot all at once - as most of you read in my last post I lost my dad suddenly and had to take on a ton of responsibility in a short amount of time. That alone was something I was ill prepared for, then add in a real job which I cared deeply about and devoted all my time to, and bills that began calling my name. Suddenly, all at once, I looked around and realized I was 32/33 and the real world was tough. It's tough for anyone, but for someone who was thrown into this at full speed with a body that was still healing, it was a lot. As I recovered further and left the house for work adventures, life adventures, etc, I continued to take on more and more. I had to learn very quickly how to juggle so many things that needed my attention and energy all at once. Keeping my health a priority was at the top of my list, but suddenly I found that extremely hard to do on top of everything else pulling at me. Days would fly by and I would miss my supplement schedule because I got busy and didn't realize the time. I would forgo my PT because I got wrapped up in work, or forget to reorder my meds. And don't even get me started on realizing the cost of the meds and supplements I was on. Talk about sticker shock! Wow. When I looked at my monthly healthcare expenses I felt sick to my stomach, and started to slowly find ways to pull back and chip away at things I maybe didn't "need" and tested the waters to see how much I could pull back before it was too much. I found myself trying to be social and enjoying life and independence while also feeling drained or like I was overextended and not giving my all to every aspect of my life. In short I had to learn how to manage everything an adult does but in a short period of time with no training wheels and a body that required a lot of TLC. It was hard.
As time went on it didn't get easier. I wish I could say I learned balance, but to be honest I learned the hard way that going 100mph all the time was not something my body could do for long. For a while I kept up the pace of work, my health, personal life, trips, advocacy, finances, donating my time to causes, and filling up my schedule with non-stop activities. I was always busy in some way whether that was juggling my health or something that kept me on the move. In some ways I loved how that felt because it occupied my mind and made me feel like I was succeeding or like I was normal and blending in with society. But ever so slowly, I started to feel the strain of it all. It was probably a year ago (I think, maybe more) when I felt my first big hint that something wasn't right. I noticed symptoms and issues popping up and becoming a problem that wasn't a problem before. I thought to myself, hmm that's odd, but I kept going. Then other symptoms popped up, this time more persistent and louder. I went for my bi-annual work trip to New York last September and my POTS was so bad I honestly did not know how I could make it through. It was brutal. I came back from there and had pneumonia, then covid, then bronchitis, then a collapsed lung, followed by a severe flare up of my asthma. Then the POTS got even worse. Then another cascading list of symptoms, mainly fatigue and daily migraines, and feeling each day that the veil was ever so slowly slipping.
When I went to the beach this summer I finally accepted that I needed more help, because managing the symptoms wasn't enough. I compared my trip to the beach this year to the one the year prior and realized the stark contrast in my energy levels, tolerance to sun, fatigue, and body pain. It was night and day. I knew that if I didn't do something now it would only get worse, because this September I have another big work trip, and if I don't act now I may come back from that 100x worse and risk losing everything I worked so hard for. So, I begrudgingly began Lyme treatment again, and this is where we are today.
I went back to my OG treatment of the DesBio Series Therapy (more info on that here), and taking it one step at a time. As of today I am 1 month in, and some days are easier than others. Being in active treatment brings its own set of challenges, but I am trudging through as best I can. I only left the house once for an activity I had pre-committed to and that was a challenge to get through, but it was also at the peak of herxing from treatment, so the timing was not ideal. But otherwise I have spent every weekend in a bed or on a couch. I haven't so much as went out to dinner, because the strength it takes to get myself up and ready for a meal after a long day of work is nowhere to be found. So I am leaning into rest and resting as much as I can between now and September 4 (when I leave for my work trip). I have learned the fine art of a slower life over the last year, and finding balance between everything calling my name. I have a mind that is so determined and wants to take on everything, but a body that operates best when I am doing the exact opposite. In due time I think I will learn to balance it all better, but for now I am doing my best and taking it one step at a time.
Thank you for being here, and thank you for reading.
xoxo,
Christina
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