making do…

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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!

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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).

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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!

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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?

M

8 thoughts on “making do…

  1. I’ll be honest I’m not familiar with your illness, but I am going to look it up. I have MECFS. I just wanted to let you know how much it resonated with me when you expressed how you’d always taken care of yourself and yet here you are, ill. I too was in the best shape of my life when I got sick. I was doing everything they say to do. Yoga, whole foods, the list goes on… And yet, my body still got sick. Just wanted to say, you’re not alone there. 🌸

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    1. I love your comment! Thank you!My husband and I literally had a conversation a few months before my diagnosis where I said to him that people go in two directions at age 50 depending on how well they took care of themselves. That conversation motivated him to get fit! I feel that I sacrificed so much to wake at 4 AM and run regardless of the weather. I got more accomplished by noon than many do in a day. Now it’s a miracle if I can move before noon! I’ll look up MECFS as well!

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      1. A lot of people with MECFS were previously very active too. I was. I hate to say it but I almost think this illness would be easier if I’d been a couch potato.😁 Instead my busy life life came to a screeching crawl. Im sure you can relate. I’m sorry you’re going through your illness. I looked it up and it looks very similar to mine. Hoping you get through the holidays okay and today has been kind to you.🌸

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      2. thank you again! I am enjoying life as best I can. In a way this has been a blessing, not having to work full time…I finally am engaging in creative pursuits for the first time in my life and finding tremendous satisfaction through those. I looked up your disease as well and the description sounds exactly like the fatigue that I feel. It’s so mind boggling-I have relatives who ask me if I feel better after a vacation, thinking that it might just all be in my head!

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  2. I can relate .. it’s hard I recently been doing the feel sorry for myself .. when my husband went to Missouri for my sons Bausch Training graduation I wasn’t able to go my mother-in-law went with him I cannot fly , and getting around the airport would have been to much on my legs .. so I stayed back with my daughter who help me at least get the house cleaned up .they are home as of last night my son for Christmas then he leaves in 12 days thank you from the reminder .. need to be thankful not for what I don’t have or cannot do is what I can do .. I was told I would never be able to have kids and I have two beautiful adult kids. I guess just one day at a time .. and yes why I haven’t been on sadly pitying myself🙄

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      1. It’s so hard when we put so much into raising them letting them go hurts so much . You can’t help but think about them and worry. I hope you hear from her more as she finds she can be independent but keep in contact . Hugs

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