Do Not Despair!
A few months ago, Posy was reprimanding herself for not having a proper exercise plan. She was laying the foundations, doing the research. Okay, all set. When her trip to the USA was over, she would begin. Already, she had bought and sorted the right clothes, had made a piano recording, organized people’s gifts for Christmas and was generally delightfully on top of things. Posy’s daughter in Florida was counting the hours to her mother’s arrival. And then ...
COVID and Parkinson's
Boom! COVID struck her for the first time. This ruined her plans to spend time with her poorly daughter in Florida. At first, she was amazed at how well she dealt with it. A few days of fever and chills, headaches and pain, but, hey, the weight loss of a few pounds was one advantage!
Of course, she was tired, tired, tired, but that was fairly normal for Parkinson’s. Many days, Posy is too exhausted to move in the mornings. Then she wonders if this is how she will remain for ever. Posy’s kind husband tries to reassure her: "You did too much. You are just over-tired."
After a week of COVID, however, Posy was horrified to find that her Parkinson’s symptoms were worse than usual. The Levodopa seemed to have lost its efficacy. She felt shaky, stiff and in continual low-level pain. Posy descended into an existence that went far beyond tired. It was almost like being dead or in a coma, except for the few hours she managed to get up on some days. Posy marveled how other people ever get up and go?
Deciding she was going to be immobile for ever, she felt depressed. The heaviness would sink over her, her brain would not wake up, let alone work properly. She was engulfed in sadness, fearing she would never see her daughter again, or that she is heading for a wheelchair, and worse ... being a burden.
If Posy tries to keep up with friends who are well, she crashes the next day. She is so fatigued that she can’t get out of bed. She is aware that a healthy person’s "normal" day would leave her drained for days. A day doing "too much" for Posy would be a slightly busy day for others.
Missing out on social life
Consequently, not only does Posy feel miserable for having to decline exciting invitations, but she considers it better to refuse politely in advance rather than spoil, derail, or impair everyone else’s plans by cancelling at the last minute.
Posy’s family loved to socialize. Her parents threw cocktail parties, dinner parties, danced, played tennis and participated in many other sports. They acted in shows, sang in choirs, entertained a zillion wonderful, close friends. Never would a Saturday night be spent watching TV!
My sister and I (and often, other friends were included) were taken to the opera, ballet, concerts, national monuments, areas of natural beauty - Posy’s parents lived long and happy lives. Posy assumed she would, too.
Posy’s sister has her parents' itchy feet and is never home. She is chairperson of various organizations, enjoys cards, lunches out and weekends away, and many other activities. Posy used to love her social life. Where has it gone? Luckily, she loves being at home with her husband and dog, but feels she should not be spending so much time in bed!
Back to (Parkie) normal
Today, Posy is finally up and (almost) "at ’em!" Thankfully, the past 6 weeks were a temporary state and Posy can live another day. The brain fog has finally lifted. She has a lot of events comping up, but they have been carefully and sensibly spaced out for once!
Posy: Learn to adapt to fatigue! Live your best life anyway!
Please, Posy begs you not to give in to despair as readily as she did. Where there is life there is hope.
On average, how many times per month do you (or your caregiver) go to the pharmacy?
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