I knew something was wrong. Really wrong! I wondered if this felt the same as my mom described feeling right before we found out she had the leukemia that took her life just nine days later.
I’ve experienced a lot of loss in my life. In my teens I lost my dad and my grandfather, in my 30s I lost my oldest son, my grandmother and then my amazing mother. My mom and I both were raised only children and my (adoptive) dad’s family all died insanely young and he was only 39. By the time my mom died, I had adopted four children with various special needs, banking on her help. Although my son had died before her, she was always a centerpiece of their lives and mine.
I didn’t know how I would do life with her gone so soon. I have struggled a great deal with not having my family here anymore. Although it truly was for the best, there was more loss when I got divorced five years ago. Because of my children’s medical needs, I’m even self-employed—truly on my own in just about every way possible.
I have described it as being UNTETHERED. When I say that, the image me scaling the rock wall of life without being tethered to anything, anyone. There is no safe place to fall.
As I’ve attempted to adjust to this single-mom-without-family-support-life of mine, I have learned a few tricks. My mantra became “I am only one person!” Even if I am all I’ve got, I recognize I can only do so much for my kids, the business I own and myself. Before I got this illness, there were days I feel I can “do this thing”, days I feel okay about it, and sometimes, days that are just hard and I find myself longing for someone to hold me and say “I got you.”
Most of my family died from cancer, so I have major white coat syndrome wondering if it’s bad news any time I go to the doctor. All of the women in my family had their FIRST cancer by 40, I’ll be 47 tomorrow. While all my family struggled with weight, I managed to lose a good bit, I eat fairly clean and know more about healthy living than my family, which makes me feel a little more confident.
Since becoming a single mom, I’ve had an inner dialog of “you can’t die before they’re adults--Just don’t die!” Wondering how I would navigate cancer treatments while the kids were still at home is something I’ve thought about…I even had a breast cancer scare in 2014 where I really had to think about it.
But I never thought about a debilitating and invisible illness.
We had a rough summer. My 17 year old had two unrelated life-threatening incidents, surgery and physical therapy and by the time school started for them, I was ready for our old routines and to get everything back on track.
Only I found myself virtually immobilized. I had no energy, I couldn’t get anything done. I couldn’t even think straight. Every mundane task was exhausting. The first week, I thought okay…you just need some time to rest after all that happened, next week we will be back to the routine.
Only next week, there was more exhaustion, more fatigue, and more uncompleted tasks. And well, you guessed it…more of the same the following week.
Then, that weekend I was throwing a Ladies party I throw every year. Even as a (social) introvert, I plan way ahead for it and have a blast. I woke up the day before and realized I hadn’t remembered to plan food or wine. Nor had I remembered to get the party goods or do anything I normally would have done well in advance.
I got everything together and then while at the party, I just kept thinking how everything felt like it was in slow motion, how much I just wanted to be in bed, how hard it was to even have conversation.
The next day I could barely move, my body had been hurting for a week like I had the flu but this was even worse. Something had to give. I talked to my dear friend who is a nurse and we decided maybe I had depression or something and that I should definitely go to the doctor.
I knew I couldn’t wait any longer. When the doctor came in the room, I asked her to let me talk for three minutes because I honestly wasn’t sure where we should start. I told her about the stressful summer, then how the last few weeks had been. She agreed that could be depression but wanted to do a bunch of labs. She insisted on testing for tick diseases. I told her she was crazy…because I’m not a fan of hot weather and only walk to the car and back this time of year. She turned out to be right.
Days later she called to tell me I have Rocky Mountain Spotted Fever. Because it is so rare, neither of us knew much about it, but she described me the treatment for it and discussed how it had damaged my red blood cells, but looked like I had escaped organ damage. RMSF is the deadliest of the tick diseases and people die from it while in acute infection. I was safe from that, afterall “I can’t die while they are young.”
Doing research and talking to other patients was most helpful. It’s also very scary to know the long recovery I’m up against...because there’s only me.
It will be six months before I feel as well as I am going to feel. I have an hour or two I can do things each day, doing more means I will painfully pay later! Invisible illnesses suck, because no one can SEE how much pain I feel, how tired I am, the daily headaches, the nausea, that if I start walking at my normal pace, it hurts and I have to remind myself I can do that anymore.
I’m angry that a tiny little bug could steal quality of life away from me and my children.
Almost a month into RMSF, I already feel isolated, my life feels quite small. I’m scared about how small it will shrink in the coming months, if my children will lose faith in me because I have to say “I can’t today” too many times, if we will get evicted because I’m self-employed and can’t work, if I won’t hear from friends who don’t understand what they can’t SEE or worse, hear their disbelief.
Today, I’m acutely aware I’m untethered and can’t climb the rock wall anymore, my fingers are aching from holding on by my nails. I don’t know what it will feel like to fall without that tether but I realistically can’t hold on.