It’s hard to describe what living with relapsed babesiosis is like, both from a care-taking sense and from a sick person’s perspective.
Jason, my beloved partner and the sick one, reports that the symptoms are not quite as bad as during his first go-round with antibiotics, but he does have scary periods of regression with bell’s palsy, where his face and eye droops a bit, and periods where his leg is numb, electricity crackles along his skin, his muscles fight each other, he’s exhausted, and generally feels not-great.
The good news is that these episodes are shorter and less severe every time so far. 🙂 In between, though, it’s hard. I’m scared for him a lot.
What have you been up to?
This last two to three weeks have been really good. The period before it… less so. Jason had a lot of symptoms, a lot of fatigue, and a lot of days where he just couldn’t quite put his finger on how he was feeling, but knew it wasn’t super awesome.
It was really tricky because we were leading up to one of my dearest friends’ weddings, and we were in charge of throwing a COVID-safe, walking-heavy bachelor/bachelorette party.
The Hard Parts
Part of what is so challenging with lyme disease and its co-infections is how unpredictable it is. With babesiosis treatment, every single day is variable, a roll of the dice over what your partner and you as a caretaker can realistically get done.
The idea of, “your best can be different every day!” is laughable when there isn’t a “best”, there is just “survival” and being exceptionally gentle, patient, and loving with each other.
Every day, there are questions: Will there be a bad reaction to the meds? Will the lyme symptoms creep back in and we have to decide if we’re switching antibiotics again, or keep going? Will he be well enough to do basic stuff around the house for our animals, even if he couldn’t make it to the party or the [outdoor] wedding? What are the backup plans: Should I arrange to move everyone over to my awesome mother-in-law’s house (even though that comes with its own set of time-constraints and worries)?
I think what people don’t talk about from being sick or loving someone who is sick is the time it takes from you.
Not only does one partner have to care for their sick partner through each episode, but also all the responsibilities that the sick partner originally so kindly and thoughtfully helped with–including caring for the doggos and the parrots, thoughtfully washing and drying the dishes from dinner, helping to pick up around the house, opening stuck jars while you’re cooking, and all the things like that–they all fall on the care-taker, who is also running ragged.
That makes it tough for couples working through chronic illnesses together because it’s easy to run out of energy as you try to do it all and keep all the necessary balls in the air, but real talk, being sick is MUCH, much harder on the person who is sick than the caretaker.
Care-taking is hard; being sick is way, way harder.
Not only do they feel beyond awful as their bodies wage war on that internal invader, but people who are battling illness also have to swallow their pride to allow themselves to be cared for and feel guilt over the responsibilities they don’t feel well enough to attend to. Add anxiety over even being able to attend on occasions that are supposed to be festive, fun, and full of dear friends, and you’ve got one giant cocktail of negative emotions.
My partner is a trooper, though. Together, we’ve got this; we are exceptionally careful when it comes to the pandemic, so even though we spent a lot of the wedding alone and away from others in better ventilated areas, that didn’t stop us from slow-dancing in the sea breeze and sending loving thoughts to the bride and groom from afar.
Every day, we are finding the tiny moments that build to a better tomorrow.
Little by little, Jason is getting better. Slowly. 🙂
Three-ish and change weeks ago, Jas switched onto the atovaquone PLUS azithromycin pair, which, in theory, is equally effective as the clindamycin and quinine pairing, the antibiotics that helped him kick this to the curb the first time. Initially, I was skeptical; he was not improving very quickly at all and his symptoms initially seemed to be creeping back.
Now, however, I can see consistency in how well he is feeling. I can see a sparkle returning to his eye, his fast smile returning more easily. He is feeling more himself.
I am keeping all my fingers and toes crossed that we have crossed the worst of this, but we still have a long way to go. We just don’t know if he will regress, if he will need to switch medications again, if he will continue to get better, if he will have another Herxheimer reaction, if his brain will begin working appropriately again… any of that. It’s a giant question mark, but he got better once before and can do it again.
In three and a half months, we will see his specialist again. Hopefully by then, his pituitary gland will have restarted and he can quit taking his thyroid meds and testosterone again.
It’s tough writing when there isn’t much to report. Just a mixture of “blah” days mixed with the occasional bad one where I do my best to care for our sweet little family– and then the wonderful period where things start looking up. I never know how long it will last, so I always try to carpe diem.
So, updates are few and far between. But slowly and steadily, we are seeing real progress. ❤