This winter, I experienced fatigue on a whole new level. The kind of fatigue I had when I had the flu a few years ago. The kind of fatigue where I’d sleep for almost an entire day — no eating, no TV, not even writing a list of things to do when I felt better — and still felt tired at the end of it. The kind of fatigue that woke me up to just how much help and healing was necessary if I was going to carry on with caregiving for the long haul.
My daughter is only eight years old, so I have to think of the long haul.
After four consecutive months of severe fatigue spells like these, I realized this cycle had to end. It had happened subtly, over time: I had moved from just plain tired to exhausted, then on to weary and apathetic, and finally, depletion. And I didn’t know it until I’d get to the point of no return, like the cold March day my daughter and I came home from a difficult doctor’s appointment and I curled up on the couch in the fetal position with my winter coat still on, waiting there until my husband got home from work and could take over her care.
Now that I have the benefit of looking back on those four months, I see that they represented the five years prior, during which I was slowly running myself down. Caring for my daughter through five surgeries. Carrying lots of unresolved grief, both expected and unexpected. Experiencing secondary trauma — and my own. Striving to find answers to my daughter’s health needs; advocating, hoping to be heard. Losing myself in her needs. Adjusting to adoptive special needs motherhood and what a shock to the system that can be after 9 years of being married without kids. Moving. Turning 40. And all the while, working, volunteering, adulting (i.e. paying the bills, cooking, cleaning, etc.), and socializing with friends and family way more than my caregiving and self care load should have allowed.
I had no margins in my life. I had used up my reserves. I had reached my rock bottom.
Since I’m a doer, I got right to the “doing” of getting better, of fixing this fatigue problem once and for all. Thankfully, the people in my village continue reminding me that it’s a process, i.e. an ongoing one.
Like my family doctor, who said — when I came to her hoping what she found in the nasal swab explained my exhaustion and could be eradicated in 24-48 hours with an antibiotic — “It took you months to get here, it will probably take months to recover.”
Not what I wanted to hear, but she was right.
For months — even years, probably — I’d jump out of bed at least once a night to check on my daughter. Was she still breathing? Was she OK? Did she have a seizure? How would I know if I didn’t check? But in the midst of all those irrational fears (some were grounded in reason, but I had certainly let the fear take over), I didn’t think I was sleep deprived. It’s not like I was doing anything in the middle of the night for her, I was just checking on her.
For years, we’ve struggled with my daughter’s intense anxiety and trauma around anything medical. And we’ve been around a lot of medical things. (You can read about our journey with medical PTSD on Advocate for Mom & Dad’s website.)
For years, we’ve struggled with difficult behaviors as a result of her hard beginning and her neurophysiological profile.
For years, we’ve tried to get the right people to help with her unique needs, and we’ve met wonderful people who bend over backwards to do so. But we’ve also met providers who didn’t take our concerns seriously, providers who couldn’t or wouldn’t take our case, providers who made us feel like we were crazy.
I tell you all of that not because I want you to feel sad or sorry for us. Yes, it’s been a hard road, and we knew it would be. We chose this path and we don’t regret it. No, I tell you all of that because I want you to know I wasn’t accounting for the toll all these things were taking on me, physically, emotionally, mentally, and spiritually.
In a decade of freelancing, I had written hundreds of blog posts about “factoring in the emotional toll of caregiving.” I had seen caregiver burnout up close and personal, among family members and among my colleagues when I worked in senior living and Alzheimer advocacy. I had even experienced it a handful of times when I worked in those positions. But somehow, I thought this was different. It was parenting. I had a lot going on in my personal life. I was working a lot more, but I liked it, and I was still good at it (although when I started making a lot of “rookie” mistakes, it was another warning sign that I needed to slow down…but I mostly ignored it). In fact, I said yes to more projects even when I already felt I was at my max. I could handle it, right? It would get easier someday, right?
The answer was a resounding no every time I landed on the couch with another fatigue spell. And when only a month would pass in between them, I knew it was serious.
So here I am, nearly four months into my “fatigue recovery” period. What’s worked?
- I take a number of vitamins every day.
- I go to the gym as often as I can with two friends who are also special needs parents.
- I connect regularly with friends and family who fill me up.
- I say no to a lot more activities and projects, both work and personal.
- I’m sleeping through the night and not waking up multiple times to check on my daughter, or to answer emails at 1am if I can’t sleep.
- I take a medication that helps me manage my emotions better so I can manage my daughter’s extreme emotions and mood swings better.
- I’m leaning in to and always growing our village of babysitters, respite providers, understanding friends, doctors, and therapists — both my own and my daughter’s.
- I’m dealing with my grief and helping my daughter through hers.
- I’m letting go of the unrealistic expectations I’ve put on myself for most of my life (raise your hand if you’re a Type A firstborn like me!).
- I’ve invested in many forms of self-care — therapy, massage, reflexology, simple daily joys — and participate in them regularly. (My first counselor had almost laughed at me when I assured her, yes, I did self-care, I got a massage a few times a year.)
This week, after a tough stretch of weeks due to a ramping up of difficult behaviors from my daughter, a minor car accident, and flash flooding, I felt the fatigue creeping in a bit. I paid attention this time. I went to bed early. I didn’t push myself. I took a few days to recover, to process, to just be instead of do.
I know there are many caregivers out there who have experienced this level of burnout and exhaustion, depletion and depression. If that’s you, I see you. I’ve been where you are. I was nearly there this week. Don’t be ashamed of it. Don’t beat yourself up for it. And don’t ignore it or think it will go away on its own. Your health is essential, you are valuable, and you can get through.
Caregiving is hard. Caregiving without help is even harder. If you need help getting respite care, or figuring out what will help you overcome whatever kind of fatigue you’re experiencing right now (it doesn’t always have to be physical), our coaches would love to come alongside you. Learn more here.