A few months back, when we were just experiencing the tip of the iceberg of Elias getting sicker, another CF wife posted in one of my Facebook groups, asking if any of us ever felt like we at times were losing ourselves to our husband's disease. At the time I didn't understand. How could I lose myself to a disease that wasn't mine? I could see how he was slowly losing who he used to be, or rather, that who he was was slowly being taken away from him, but me? I wasn't losing myself to this disease. I didn't think that way mine to own.
But now, now I get it. I get how as a caregiver, you can lose yourself to someone else's disease. Your entire being becomes about caring for that person and fighting for them when they can't fight for themselves. Endless phone calls that make my blood pressure go through the roof and make me want to pull every single hair out that isn't already falling out because of stress. Trying to balance being a mom and a wife and a small business owner. Spending countless hours filling out paperwork on his behalf, driving him to Dr's appointments, sleeping in recliners in his hospital room or hotels or guesthouses for days at a time, dropping everything at a moment's notice to take him to the ER, and then trying to at some point go home and spend time with our kids, while relieving family who have been taking care of them, while he's stable enough to do so (I don't have a great track record with that by the way). I eat whatever sounds good and is available in that moment (and is usually unhealthy) and hardly ever get any exercise. To exercise I need to convince the boys that they actually enjoy walking in the stroller or go when someone is available to watch them. Practicing self care feels nearly impossible, there just isn't enough time left at the end of the day. Oh and did I mention that I do actually work occasionally?
Some days it feels like this is all I am, that there isn't time for me anymore. There is truly no truer test of love than walking the road of chronic, life threatening illness. You simply cannot fight this hard, day in and day out for someone you don't love deeply. I do it because he deserves it, but also because life without him is almost unimaginable, though I do my best to convince him that we will be fine if things don't go the way we hope, because with time, we will.
I shared with a friend tonight that this all seems so surreal. That last year at this time we had no limitations as a family and this year we are facing a double lung transplant as our only option for a future together. It's still hard to comprehend how his lungs changed so very fast, but I still hold out hope. Each time I talk with someone who has had a successful transplant, my hope grows and I cling to that because I see what we can be given. I'm not naive and I know that our story could be different, but for now I cling to hope.