You know it's time to replace your cell phone with the battery no longer holds a proper charge when it reads in the 80s with power percentage and suddenly drops to 15% with no warning, or when it no longer fully charges at all no matter how long you leave it on the charger. I've come to conclude I have a broken battery just like that.
I've wracked my brain trying to understand why I'm so tired, and why it never seems to get better. My doctor has run through a gamut of ideas that we've put into practice over a year and none of them have seemed to make much, if any difference. Finally, in the last visit, he mentioned Chronic Fatigue Syndrome. My heart sank a little bit. I knew that was not going to be an easy fix.
I came home and attempted to understand what that even was. What are the criteria for diagnosing someone with this? I learned that it's three main required criteria and one of two secondaries. This fits exactly what I've been going through. I spent time diving into understanding the various other symptoms that sometimes accompany this diagnosis of CFS/ME. I spent time listening to the history of this illness with the medical community. I listened to a litany of perspectives about it and how to treat it. I came away not only discouraged but feeling hopeless. No understanding of what causes it, no effective treatments listed, and no prognosis of recovery were most of what I found. Am I just going to be tired forever? What an exhausting proposition this turns life into!
I'm grieving my former cognitive abilities, my clear mind, my ability to read, my ability to remember things, my ability to play with my children, go for a hike, or do housework without collapsing into bed for hours afterward and feeling wiped out for days beyond that. How does one live like this? How do I function? I have kids, responsibilities, and a marriage!
I had an appointment with my therapist today in which we talked about this and how it felt - heavy, that's how it feels! She was kind and understanding and asked me to give myself space to grieve my expectations and desires that may not be possible right now and then to give myself more compassion and kindness for this unexpected turn of events.
I came home from that one appointment exhausted, of course. I laid down hoping I could nap, but that's not what I was capable of. I rested instead but never fell asleep. I lay there and wondered how this happened. What triggered this? I thought back to last October and our family's vacation to Albuquerque. I was capable of more then than I am now. I did not drop from exhaustion and exertion the moment we were done hiking Carlsbad, or going to the Balloon Fiesta. What happened between then and now that has changed things? I remembered vaguely that in December I spent 3 and a half solid weeks sick with one thing and then another. I was so sick, and I was really wiped out. I remembered that following that experience I never seemed to recover my energy all the way, and since then I have progressively gotten worse in the ways that now look like they are likely in the ME/CFS category. That must be what has changed things so much. Nothing else makes sense. That means I am 5-6 months into feeling exhaustion that has no relief, and seems to get worse if I try to do much at all.
I do not have a diagnosis as yet because my husband is having to change jobs and we will have an interruption in our insurance. It just so happens I need to replace my CPAP machine due to its age. Until I do this and rule out poor CPAP management of sleep apnea, my doctor is unwilling to move forward with a CFS diagnosis. I would love to believe that replacing that machine will solve this whole issue, but something within me knows it won't. Until then I am in the unofficial diagnosis situation even if it fits really well.
I'm trying to learn to adjust to life on a different level and with not being capable of what a normal mother in her 40s should be capable of doing. It is a very frustrating feeling to be so stuck and with few options to look forward to improvement. I cried some in my husband's arms last night as I learned more about this potential diagnosis. It feels heavy on top of other things. I don't want to sugar coat this in documenting my journey with this, but I also don't want it to be all depressing things. This first entry is about my struggle to grapple with this likely possibility. If you, too, are going through this, know that my heart is with you. Having a broken battery is absolutely no fun.
