It’s been quite the year. It’s crazy how quickly this year went. And how many changes have happened in these last 12 months. I know they say not to live in the past, but this is reflective. I think I reflect a lot which likely comes from the anxiety I have about being perfect. I’ve also leaned this last year that you can’t be your best version of yourself when you’re walking on eggshells constantly. I’ve learned how important consistent and valuable feedback provides such higher quality of work product.
I had lost faith in humans these last 12 months. And when I say I lost faith, I lost it from those where I expected support. I have an out- pouring of support and I feel so fortunate. I questioned whether true empathy existed anymore. True human understanding who understood work life and personal life; and I didn’t have to feel belittled or brushed off due to uncontrollable circumstances.
These last 2 years have been a journey. A whirlwind. A friend told me, God never gives you more than you can handle. And he’s right. I’ve bounced back each time.
I remember last year feeling like my summer had just started at this point. I worked all of June at the brewery and a side gig I assisted so the main employee could have some vacation. I was exhausted. I kept a smile on my face. Less than 2 weeks later I’d end up with a slipped disc that lead me down a path I would have never expected.
I figured after two injections in my back to reduce inflammation would be the fix so I’d be back on my feet for school to start…..I was dreaming. This was the start to the end. I was exhausted every day. I’d come home and sleep and still feel exhausted in the morning. I was ready for my visit to Mayo to get some answers.
I survived September…..barely. October came and it was getting hard to fake it. It was hard being a mom, working full time and finding time to plan after school with a traveling schedule. Everything was getting worse. The headaches, the nerve pain, the leg pain. My whole body felt like I’d been hit with a Mack truck 🛻
Mayo confirmed that I indeed had long COVID or post COVID or long-haulers. I don’t even know what the correct term is. Great news! No treatment.
I never went back into a school building after coming home from Mayo. I never got to say goodbye. The plan was to take a leave and rehab as much as possible and see where things were at in 3 months. December came and with as aggressive we were with any possible treatment, I wasn’t getting better.
I had an honest conversation with my PCP and it was decision time. Would I really be ready to be at full capacity or at a point where things could be modified and still work? With my job, the modifications would have been impossible.
Life change #1 - my passion I that took time away with family was no longer an option. 2 years of traveling 300 miles 4 days a week to go back to school for this new career path. Done.
Life change #2 -Now the need to find a job where working from home was an option. The amount of anxiety I had over this decision kept me up at night for weeks. What could I even do from home and still make enough money to cover bills being single?
Life change #3 - adopt a puppy in December in Midwest winter 🥶
Life change #4 - start working from home…..realizing that I found an amazing company who values work ethic, positivity, core values of keeping employees connected, and pride themselves promoting within the company.
Life change #5 - diagnosed with chronic Lyme/ late Lyme along with 5 co-infections. In April I started treatment. Within a month I was having horrible reactions to the herbs, so I had to stop and wait for the next plan of action.
***1st big set back**** May
By the middle of May I had my first the realization that I truly had a very weakened immune system. I caught a GI bug that was lasting most people 5 days. I lost 35 pounds in a month. I continue to have issues with food. My sensitivity to food has drastically changed and what I can eat is extremely limited now.
What I would typically get as an aura for a migraine has changed. I used to get a hot flash with black spots which would be the indicator a migraine was coming. And now, I can’t keep food down. Silver lining…..I am feeling better and not feeling so puffy.
While dealing with the never ending GI virus I started a new medication that is meant to reduce inflammation. It also helps with balancing hormones which can cause inflammation. Essentially, post COVID caused a ton of inflammation within my body. This has been a miracle! While it’s crazy expensive since my insurance won’t cover it, it has allowed me to eliminate all migraine medications, my heart medication to manage my PVCs, my dizziness and feeling faint all the time, LDN that was used as a pain receptor medication, and an SSRI. Other than my weekly injection I have two medications for management of fibromyalgia and nerve pain. I’ll take the nausea to take less medication! That’s a win in my book
I soon realized that I was having more crash days than good days. Finding the right balance of the right foods to not irritate my stomach or cause a headache is trial and error. Even getting in enough calories to sustain energy.
Knowing that my body can’t handle a 9 hour car ride for a family wedding. My body cannot handle working two brewery shifts in a row. If I over exert myself to too many late nights out I need 4 days to recover to feel normal again. I love my side gig. It’s fun when you love where you work! Working all day, working a concert of an 80’scover band, then getting home at midnight knowing I had Friday off, was so worth having a pretty low key 4th of July!
And I guess, here we are…back full circle. My social life has taken a huge hit. I enjoy a lot of alone time to recover from the mental challenge of my job. I pick one day on the weekend to go out and do something. I’m learning cues from my body when it has had enough. I’m learning to stop before I push too hard and have a flare.
Life has changed. My perspective has changed….and it’s changed for the better. I believe that good people do exist. I know that I can handle hard things. Whether I will ever feel normal or have my body function back to where it was, who knows. I’ve always been one to roll with the punches. Something I learned at a young age. You have to be flexible, or you’ll end up disappointed.
I’ll see a Lyme specialist in August who will consult with Dr. Green in Massachusetts for a plan for possible IV medication due to absorption issue in my gut.
It was a beautiful day at the lake today. Life and perspective was on my mind.
Life can be simple, where it’s the little things in life that truly matter. Perspective.
What I’ve learned
While I sit here, Sunday morning with an iced decaf coffee since now regular coffee makes me sick, I also think how much I’ve grown personally.
I’ve learned that my body has changed, but me as a person has not. While I may have a chronic illness, the illness doesn’t define who I am.
After our second cover band concert at the brewery Thursday, a coworker gave me one of the nicest compliments. He said, you can tell you really care and love your job and your coworkers. You can see the smile on your face and how much you laugh. Even my manager piped in and agreed, that I had kept up for such a busy night. It was intense. We had an amazing beertending staff where teamwork makes the dream work. Another reason I continue to spend what time I can bring around those coworkers and friends who love me for me and all my hot mess express flaws.
I learned that it is okay to ask for help in order to do what is best for your family. It was a hard decision, but in order for me to heal I have to put myself first.
I have the greatest friends and family. They understand that I cancel last minute sometimes because of how I’m feeling. It sucks being that friend but the ones that care understand and never make me feel bad about having to try and reschedule.
If you or someone you know has a chronic illness it’s a rollercoaster. You never know what type of day awaits for you. You wake up, you do what you have to, and adjust based on the day. I’ve learned to listen to my body and rest when I need rest. I don’t over schedule my social life. And keep my social circles small. I have a limited immune system so any little virus or bacteria makes me get super sick. And it typically takes me two times longer to recover. I still feel guilty for all the time I spend resting.
I love my nights and weekends at home being low key. Binging the latest Netflix true crime docuseries. It can get lonely sometimes, but it’s the battle I choose to stay as healthy as I can.
I’m hopeful that I can find balance. I’m proud of myself. This battle isn’t done alone.
Allowing myself to embrace the ride.
Living one day at a time.
Be well. Be kind. Be yourself.
