If you’ve been following me then you probably already know: I achieved remission from Lyme disease and its major co-infections at the start of the year. Then I totally unplugged & took a some time off, which I talk about in my post: How I Transitioned From a Chronic Illness Identity.
Reaching remission is kinda a big deal, and I realized that what I hadn’t shared what its actually been like after 20+ years of chronic illness & 7+ years of full time treatments, to finally be “better.” Until now.
While I was sick, I often used to imagine living free from illness. I believe in the power of visualization (and daydreaming!) so I’d spent a good amount of time picturing different aspects of my post-Lyme life.
However, no amount of imagination can prepare you for experiencing a radically different reality.
Going from being chronically sick, fatigued & in pain and having your entire existence revolve around treatments & symptom management, to feeling better and suddenly getting to live “normally” is indeed a radical shift.
Some of the things I’d envisioned about remission were spot on. Other’s surprised me. Here’s what my life in remission from Lyme disease & chronic illness has really been like…
1️⃣ We became active in a church and made some much-needed friends.
I LOVE our online chronic illness communities, but there’s just no substitute for folks you can see face to face. Truthfully, Wonderhubs & I were in desperate need of some IRL friends.
Five years ago, we moved to Seattle to find better Doctors, which thankfully we did. But we were then so bogged down with the realities of my illness and its treatments that we never got the chance to get out and connect with a local community.
Without family or close friends, the loneliness and on-our-own-ness we faced those first few years were unbelievably, soul-crushingly HARD. Once my health allowed for it, we were eager to get out there and make connections.
Getting to being social again has been one of the very best things about regaining my health.
2️⃣ I throughly cleaned our apartment.
As I’d mentioned earlier, we’d been living in Seattle for 5 years, and in that time, not once, had our place been deep cleaned. When you’re in survival mode & all of your energy is going to healing, a lot of every-day things fall by the wayside.
During my treatments it would often take several weeks for a load of laundry to get put away, all the while being dug through & added to countless times. Given that we seriously struggled with laundry, you can imagine what else got neglected.
So once I could, I rolled up my sleeves, turned up the music, and got busy with my non-toxic cleaners. It felt SO GOOD to clean all the little things that used to bug me when I was sick: the fingerprint smudges in the hall, the grease stains behind the stove, the filth along the bathroom baseboards.
All that cleaning felt like starting anew. The energetic shift was both noticeable & invigorating.
I also did some redecorating. I got rid of the stuff that reminded me of how sick I’d been & replaced it with things that represented the new life I was creating.
What I didn’t realize when I’d started is that I wasn’t just scrubbing away gross build up. I was transforming the place where I’d struggled with chronic illness into a home that reflected my New Wellness.
3️⃣ We explored our city, basically for the first time.
When we moved, I still often required a wheelchair, which I continued to use the first 2 years. Seattle is a lovely city, but at the time it didn’t have great wheelchair accessibility. It also has some major hills, and I could tell from Wonderhubs’ grunts that pushing me up them was NOT fun.
Between the logistics of getting around and the extremity of my fatigue & environmental sensitivities, leaving the apartment was usually more trouble than it was worth. Weeks would go by where I was essentially homebound.
Now, not only do I have the energy to bus or walk across town, I’ve also healed many of my sensitivities that once made being in crowds so hazardous. Plus, since all of our money isn’t going to my medical bills anymore, we were able to purchase a cheap used car, which has given us more freedom to explore.
Even though I’m not technically new to Seattle, it feels as though we just moved, since we’ve only recently begun to really explore it. Turns out being a tourist in your own town is a lot of fun!
4️⃣ I binge-played Zelda: Breath of the Wild.
I’d been dreaming of going to church more, making friends & finally getting to know all the cool stuff in my area, so I did just that. I also figured I’d be so hungry for people-places-activites in my new life that I’d be out & about All. The. Time.
In my visualizations of Post Lyme Kat I’d somehow overlooked the fact that remission doesn’t magically make introverts into extroverts. So while I do go out more nowadays, I also stay in a lot. The only difference is now I stay in because I want to.
While deep in the healing trenches, I had very little time outside of my protocols & detox therapies for hobbies. When I did, I was almost always too fatigued, physically & mentally, for anything that required focus and/or sitting upright.
Getting to play Zelda for hours because my schedule isn’t full of appointments & detoxing, and because I can finally remember the buttons for a combo, is another one of the wonderful things remission has freed me to.
5️⃣ I focused on nourishing & rebuilding my marriage.
After several looooooong years of chronic illness, our relationship was as battered & worn down as I used to feel. More than once the stress & hardship of long term sickness nearly broke us.
Wonderhubs & I have been together for over 13 years. After my health collapsed we almost didn’t get married. Then we almost divorced. And once we actually separated (briefly.) Each time things got breaking point bad, we sought the help of a couple’s therapist & thank God we managed to stick together. But it was HARD.
Once I was feeling better, Wonderhubs — who had been my primary caregiver — finally got to be first & foremost, my husband. That was huge. And since the majority of of our resources were no longer earmarked for out-of-pocket healing, we finally had time, energy & money to put towards ACTUAL DATES.
Hands down, the best part of getting better has been discovering that after all we’ve been through, our relationship is actually stronger & healthier than it’s ever been. Honestly, we’re like a couple of teens in love; I’ve never been happier.
Couples: hang in there. It gets easier & if your relationship survives chronic illness, it’ll be that much stronger for it.
6️⃣ I’ve been able to focus on other dreams & goals.
There was sooooo much I wanted to do and create for Hope Heal Cook while I was still healing, but I never had the time & energy for it. Now I do and I’ve been busy working behind-the-scenes on some great resources for our chronic illness community.
Like recipe submissions to the 30 Minutes Meals for the Paleo AIP ebook, which recently came out.
If you’re in a place where healing is your top priority & it’s frustrating or depressing cuz it’s meant keeping your other dreams & goals on the back burner, don’t worry. You’ll get there.
7️⃣ I’ve been reading an obscene number of books, none of which have ANYTHING to do with healing.
Fact: I’m a bookworm, born & raised. But for years brain fog & other neurological symptoms made it darn near impossible to read anything, let along comprehend it.
Now that I can read just fine (even small print technical stuff!) I’ve been devouring books, usually several at once. Basically, all the time I used to spend in medical offices I now spend at the library, which makes me very, very happy.
8️⃣ I get to sit back, rest & be grateful for all I’ve overcome.
Back when I was sick in bed, I daydreamed of going to daily yoga classes, volunteering for non-profits, hosting weekly potluck socials & publishing my own cookbooks. But when I truly realized “it’s over, I did it” I found that I didn’t want to immediately jump into a new business.
Instead I found myself craving still moments where I could simply enjoy feeling well. I also discovered that I was tired. Not fatigued, mind you, but sincerely tired. This came somewhat as a shock. I’d assumed that with remission, I’d automatically find myself having boundless energy.
The reality of 20 years of chronic illness & several years of full time treatments had taken it’s toll. Yes, my infections were gone, but my body had been through A LOT. I had been through a lot.
Looking back, I don’t know how I kept up the intense, ‘round-the-clock treatment schedule I followed in order to save my life from End Stage Lyme. I managed it (somewhat miraculously) but ohmygoodness it was exhausting.
After all that struggle, I kinda just wanted to rest. So I did. I rested, relaxed, did little or mindfully did nothing.
I gave myself plenty of space to simply sit & feel unbelievably grateful that I’m alive & well.Achieving remission is not the same as being 100% All Better. There are still some co-factors, like heavy metal toxicity, that I’m continuing to address. It’s going to take time to rebuild my body & heal the traumas borne from experiencing severe chronic illness. So I’m still healing.
Nevertheless, remission is both possible & worth it.
Our stories about living with illness are important. So are the stories about life after we finally succeed in healing ourselves. I hope my story of life after Lyme can be a light for you & a source of hope.
Don’t ever give up. You can heal & you deserve to heal.
Hugs & game controllers,
P.S. What are you most looking forward to about achieving your own healing and remission? If you’ve already created a New Wellness for yourself, what’s been the best or the most surprising part of life post-illness?
“It always seems impossible until it’s done.” ~ Nelson Mandela
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