I wrote on Instagram the other day:
I find myself strongly questioning the path I’m on at the moment. Our summer was one of healing, rest, and restoration in many ways, especially for those of us in the family who have chronic illnesses. Less than three weeks into what one might call a ‘normal’ fall/school schedule (such as it can be in the strange times we find ourselves in)—and I am completely and utterly depleted. My fellow Spoonies in the house are also showing the strain. Needless to say, we’re calling a time out and recalibrating. I’m not even sure what ‘normal’ can or will look like for us anymore, but running on fumes ain’t it. Now what?
It’s been roughly a week since I wrote that, and I feel no closer to an answer. I feel like ‘butter scraped over too much bread’, and well, where does one get more butter and less bread? How do I serve the needs of my children, physically, emotionally, spiritually- serve my husband and myself similarly- when there just isn’t enough of us to go around? While for the first time in our family’s history we are not struggling financially- Glory be to God- everything else feels short. My husband and I both fell ill with you-know-what in March. While my case was milder, my husband suffered severely and required oxygen support for nearly three weeks. He has since suffered many long haul symptoms, and it feels like we just can’t quite get his ‘gas tank’ back to full. He will get a bit of rest, a bit of healing, and then something comes flying at us and it drains him to fumes again. We keep walking back and walking back from commitments, saying no far more than he would like, and still, there’s just not enough margin for him. I feel like a decision is before us that is going to greatly disappoint some people, cause some hurt and discomfort, but it’s a decision that has to be made, and soon.
I could say similarly for myself in the gas-tank department. While I’ve gotten better and better at managing my symptoms and diet, there are still days, physically, where my illness just says, yea, nope. And it drains me so badly, those days- and it seems to take longer and longer each time to recover from them. And then regular life throws a curve ball, and what little gas I might have in the tank takes a nose dive.
Both of my medically fragile kids seem to be transitioning too- one has improved a lot meaning less interventions, and the other (who has been pretty healthy for awhile) has suddenly downshifted and we’re having to recalibrate and recalculate there. The mental load of that is pretty exhausting, which I don’t think I was willing to acknowledge to myself back in the day but I do readily acknowledge now.
I keep praying for wisdom and margin.
A few reads that have encouraged me lately in this department:
Finding Ground by Jordan Durbin
Lord of the Sabbath by Leslie Bustard