I feel like I’m the only one who is literally paralyzed by brain fog and extreme exhaustion! I belong to the Facebook group “Sarcoidosis Health and Fitness,” where it seems that everyone is running, spinning and doing massive amounts of daily exercise in addition to their normal daily routine! I cannot wrap my brain around this. I am as Type A as anyone else. I am responsible, motivated, happy, enjoy life, look forward to learning new things, have big dreams and hopes, yet I absolutely cannot MOVE half the time! And, if I somehow DO have a busy day (no exercise, mind you, just a normal “other-people” kind of day, I pay massively over the next few days in the form of couch potato-ness and sleep. How can I possibly explain this to anyone when I don’t understand it myself? My most recent brain MRI shows white spots which indicate lack of blood flow to parts of my brain which means those areas don’t get enough oxygen. This is a finding that is more common in people over the age of 65, but I am 15 years younger. The doctors “poo-poo” it as a “normal” finding, without regard to the fact that I am too young for this! I never smoked, drank, took drugs. I was a daily runner for 30 years! I’ve never been overweight. I’ve been fit, active, busy with a full life and four children. I eat tofu, beans, rice, stay away from junk food, no sodas, only water. I was under the impression in my late forties that I had girded myself against deterioration with a healthy lifestyle and would therefore be an active, healthy person in my later years! I even encouraged my husband to start running in his late forties! He was overweight and unhealthy and now he is much more fit than I am!
Other doctors say that I carry such a large burden of sarcoidosis in my body, and that is the reason for the exhaustion. I’ve been receiving powerful medication now in the form of pills and IV infusions for two years. I would have expected to feel better but truly only feel worse. There are some good days but those are rare. Perhaps there is a seasonal component, as I did feel somewhat better over the summer (although definitely nothing to write home about).
In addition to the “fogginess,” there are other issues too that remind me of the dementia patients I used to care for. I even started making a list that I add to every time I’ve done another weird thing like denting the car (again) or forgetting to pick up a child at school (which has happened several times now). Fortunately I have wonderful friends who remind me!
I don’t know where all of this is headed. I don’t really care much either. I’m so thankful to have a positive outlook and hopes and dreams. I really just enjoy every day in the capacity that I can and I am so fortunate to have a husband and family who tolerate my condition and still love me. Isn’t that what it’s all about?