Sooo I’m about to hit you with a very stream of consciousness brain spill about living with Lyme. I mostly wrote all of this out while sitting in my sauna, furiously typing to get all of my thoughts out while my brain felt like it was functioning properly, amidst all of this insane brain fog (and before my phone overheated in the sauna because that only takes like 25 minutes in 158 degrees!).
I want to let you know in advance this is not my usual optimistic spin on things and this is very real and raw and from the heart. I have had an incredibly rough few days, and when I’m being very honest with myself I know it’s been an incredibly rough few years.
I am lucky to have so many good things in my life. Jonathan, my family, a job I love where I am able to work from home and create from my heart, a handful of incredible friends, obviously the best cat ever (hi Huddy man), but this shit ain’t easy. I am so ridiculously sick and I wonder sometimes how I am maintaining my career let alone my life… (well I know, and that’s because you guys are awesome and have totally evolved alongside of me and that’s why I am able to keep blogging full-time.)
So let’s get into it, now that I’ve intro’d you into what you’re going to be reading. Enjoy my brain spill. 🙂
There is nothing easy about being sick with a chronic disease. I try to think back to what it was like before I felt this way, doing this intricate dance with Lyme disease and my life, and it has been so long I am not even sure that I can pinpoint when it was that I felt normal.
College is the first thing that comes to mind, but I know even 4-ish years ago I was feeling a lot better than I do now, even if the symptoms were already coming on. It’s wild to try to count the years/figure it out, even though the “when” doesn’t necessarily matter. My brain is just constantly trying to wrap its head around what it must feel like to not feel like this.
I am still getting used to everything that comes along with having something that is chronic. With regular illnesses we get sick, it sucks, and the only saving grace is knowing that it’s going to go away. I think most days I still have trouble believing that this is not going away. Yes, I will get better and feel way healthier than I do now… but for the most part, I will always be managing the symptoms and nursing a delicate system after this experience.
Right now I am at the stage where I am realizing that it’s been almost two years of feeling completely not myself. I have hit the point where it’s been long enough I realize many people in my life simply know me this way — only this way — and never knew me when I was healthy.
Chatting with my best friend the other day it struck us that even the night Jonathan and I first kissed and then started dating, I was already feeling all of the symptoms of Lyme Disease that have now become my norm. So the love of my life, who loves me whether I’m healthy as can be or totally bedridden, has yet to get to experience me at my fullest without this disease. That is a wild feeling.
I have gone through so many stages of how I feel about having chronic Lyme since i was diagnosed last June. I went from relieved about having answers, to over the moon and vindicated that I hadn’t been wrong about how I felt for all these years, to being slightly terrified and overwhelmed about this new life of treatments and protocols and medications, to being totally heartbroken and frustrated over things that I have missed / can’t do, to pretty optimistic about my progress, to totally frustrated all over again because healing is simply not linear.
Lately I feel all sorts of ways about it all depending on the moment. Most of the time I feel very grateful for this healing path and all that it’s taught me- in those moments I feel optimistic about my protocol and a wave of extreme patience and calm washes over me knowing that I am on a long, but steady path toward healing.
Other times my symptoms hit me so hard, flaring terribly seemingly out of nowhere, they leave me bedridden and in pain and completely unable to live even somewhat similar to my normal life. These last few days have been that way.
On Saturday night I was up ALL. NIGHT. with raging insomnia, which is one of my indicators that everything is really starting to flare. Of course lack of sleep doesn’t do me any favors either. So by Sunday morning I felt like I had been hit by a semi truck. Jonathan took one look at me when he woke up and told me I needed to stay home and rest, which at first I resisted because we had plans with our families and I was so looking forward to it.
Thankfully I listened (sometimes I need a major push and some tough love in order to open my eyes to what I really need) because as the day went on I reached a point where lifting my arm to grab my water glass from my nightstand was too exhausting for my body.
Too tired to read or watch TV, too stimulated and panicky to sleep. While I laid there I considered the position I was in and went through extreme waves of emotions. On the one hand I feel lucky and grateful for the treatments I’m able to receive and for the many good days that I have.
On the other hand I feel totally lost and I ask myself everything from “Why on earth am i planning a wedding right now?” imagining the happiest day of my life being clouded by these raging symptoms, to “If I felt this way every day I wouldn’t see the point in living.”
It’s a total roller coaster. When the “chronic” part of chronic illness seeps in… it can be hard to remember life before being this sick.
Something I see a lot of in our High Vibe Chronic Lyme and Chronic Illness Tribe on Facebook is that so many people out there are not only struggling with their illness, but struggling to gain acceptance + understanding from just about anyone in their life about what they are going through. It breaks my heart. I have very much been in that position as well, but I am now at the point where if someone doesn’t get it / respect the unique way I have to do things right now… I don’t have the energy for it. I know whoever is meant to be in my life will get it, and they do.
I think what a lot of people don’t realize is that a lot of us with chronic illness also struggle immensely with guilt. I mean immensely. I often wake up in the middle of the night with my heart racing out of my chest, overcome with panic stricken guilt about something I forgot to do or someone I fear is disappointed in me for not being well enough to be in their life or most often about my plans for the next day or the coming week just knowing they’re going to be nearly impossible to make it to.
It can feel impossible to feel like I am “doing enough” as a friend, a sister, an aunt, a daughter, a fiancé, a cat mom, a human… and something about the anxiety of the middle of the night can bring those thoughts and fears into a full blown tail spin. It makes me want to jump out of bed and do a million things at once, and keeps me up all night to the point where waking up the next day feels like the hardest thing in the world.
It is my nature to get inspired about my work and overbook myself in the moments I am feeling well — overbook myself with podcast guests, events, trips, plans, deadlines, all of the things i cannot even fathom doing or engaging in when I’m feeling at my sickest. So planning ahead is… so hard!!! I never know what I am going to be up for or not up for, and running a business that way is hard.
I usually just push my way through it but some days I look at Jonathan and say, “I cannot do the podcast tomorrow. I need to cancel my guest.” And he will look at me like, “Seriously?” because we both know there’s a good chance that person will not understand and will be frustrated AF. I hate doing that, but I also hate showing up to record something I am so passionate about sharing with you guys when I just don’t have it in me — or doing anything at all when I can’t give it my all, including catching up with a friend over coffee. I can’t fake it when I feel like shit.
On a walk with my parents yesterday, during a good few hours. 🙂
It comes in waves. Most days are both good and bad in terms of energy levels and how I feel. Other days are purely bad, and they last for days or weeks on end. Usually by “bad” that means severe exhaustion, brain fog, body pain, nausea, and an overall lack of motivation to function or get out of bed and face the day.
I know on social media it looks like things are all fine and dandy. Even in person it looks that way! Invisible illnesses are so difficult that way, so painful. Maybe you’ll notice a lack of zest in my eyes or a lack of strength in my voice, or you’ll think I am just not interested in what you are saying. Or perhaps you’ll think I am a flake because I often have to cancel at the last minute these days.
But that’s not it at all… it’s a struggle to be out of bed at all, always, any day of the week, and if I am… I am probably struggling. Barely able to retain info in a conversation. But looking 100% normal and healthy.
Once in a while I will have a streak of good days (which is amazing!!), but I am still learning how to handle them so they don’t end up being depleting. In fact a few days of last week I felt quite good, and I absolutely ran myself into the ground because I was so overjoyed about my energy and inspiration and zest for life/work/exercise that I just wanted to use it all while I had it. Because sometimes even when I don’t use it, it still goes away the very next day.
I am still very much figuring out my healing formula. A combination of eastern and western medicine has been serving me well. I mostly take herbal remedies for Lyme and co-infections, get vitamin infusions, juice 3x a day, do coffee enemas 2x a day, get colonics weekly, acupuncture, massage / fascial release, eat an SOS free diet, do yoga and light jogs / walks when i can, try to get a lot of sleep and live as low stress as possible. But I also get antibiotic IVs twice a week and taking anti-malarial pills for babesia… and I am not sure I would exist without all of that too.
The unfortunate thing is that even healing can be an exhausting job. Driving to the doctors office and getting treatments for a few hours is just about all my body can handle in a day. But when I don’t do it, in favor of more rest and downtime or squeezing in more things for work, it backfires on me terribly. At least when I am doing it, I know I am putting in the effort to heal and that feels good even when it’s hard.
Soooo… that is my update. It’s not easy. It’s painful. I am guilt ridden, even though I am working hard to try to let go of that guilt because I know feeling guilty is pointless and I am putting that pressure on myself, no one else is. I am tired and crying on the inside ALL of the time, no matter where I am or what I am doing… being in bed always sounds much better.
I look forward to feeling better. I know I will heal. I have dedicated my life to healing. I am going to Vancouver this weekend to study the Gerson therapy and kick off my health coaching program (I also ask myself why the F am I doing this right now when I feel the way that I do???? Because I am Jordan and this is the kind of shit I do) and I am excited because I do believe this way of life will help me heal.
I am so dedicated. I will do whatever it takes to get better. And I am just lucky and blissfully grateful to have you all along for the ride. Thank you. I am also lucky to have the best family, fiancé, and friends in the world and I will never stop being appreciative for their support that I know not everyone has the luxury of experiencing.
Thank you so much for reading this brain spill about living with Lyme. I know this post wasn’t uplifting but it was real, and that’s what I’m here for. I’m just glad my brain fog finally lifted enough for me to write it.
Love & adore you all. Would love to hear your thoughts on all of this. <3 Also would love to hear your stories in the comments. Join our Chronic Illness FB tribe if this convo resonates with you. xx