How Do You Do It? Working and Parkinson's
Are you still trying to go to work? Posy can cope with working from home, but she would find it too difficult to manage a teaching job, or anything that involved a standard routine.
In the last few years of her position as Director of Music in a school, Posy couldn't understand why she would feel as though she were fading by lunch time. The long days were excruciating and she was permanently desperate to go home.
Freelance and working from home
Luckily, Posy was able to switch to working freelance. Since her diagnosis shed light on her condition, Posy understood that she could not carry on at this pace, hoping to feel better.
Now she is no longer "going to" work, so she has the luxury of getting up and organizing her day according to how she feels. From her first dose of meds, it takes a good hour for the dreaded brain fog (and some nausea) to dissipate. There are far too many days when it lasts until after lunch.
Posy's friends often advise her to "get up and out of bed." Well-meaning they may be, but staying in bed is not really a lifestyle choice when you have PD. The fatigue often makes Posy's head feel too heavy to lift off the pillow. Her body feels paralyzed.
Posy advises herself to "go to bed earlier." This often helps, but, unlike a healthy person, this will not extend the hours in her day. It just means she will get an earlier start, and have to retire earlier, feeling too tired to do anything other than slump in front of the TV.
Choosing when to be "on"
Posy has days when she is "on" most of the time. Well, that is what she has been telling herself. But actually, maybe like you, she has to choose when she needs to be "on."
It is like possessing a good flashlight, but not being able to use it freely, in case the battery runs out at a vital moment.
During the good hours, Posy tackles cleaning and other domestic chores, writes articles, and practices the piano. She often has a coffee with her neighbors, and sometimes walks round the block with her husband and dog.
This is all good, the only negative being that there is limited time to fit everything in. If the day starts late, it can extend into the evening hours. If it starts earlier, it has to end earlier.
Inflexible work-places
Teaching in a school cannot be flexible, in that the day has to begin at 7:45 AM if the children arrive at 8:30 AM. There are clubs after school, so it is difficult to leave before 5:30 or 6 PM.
As Music Director, Posy took rehearsals, put on concerts etc, all out of hours. So-called "break" times were spent doing playground or other duties. A lot of energy is required, as motivating the children is key.
Even though the incessant administrative work, preparation, and marking can be done at home, they often overwhelm the healthy teachers. Now add a disease such as Parkinson's ...
Medication complications
What do you do when you have a change made to your meds? Posy finds herself thrown by this. For example, recently, her problem with getting to sleep combined with the leg pain in the early hours allowed no rest.
Amitriptyline had been prescribed and Posy's akathisia (that awful, torturous electric shock sensation) diminished. However, the insomnia continued apace and leg muscle pain still kept Posy awake most of the night.
Clonazepam was prescribed to replace the amitripyline, Well, Posy was definitely able to sleep better. As in, Posy could now not get up at all! She was sleeping all day, unable to lift her head off the pillow until about 5 PM.
Then, she started experiencing daytime anxiety. And next, a dreadful tearing-at-the-skin itchiness on the tops of her feet and lower legs. What is all this? (Ho hum! Round and round in circles!)
Coping with the inconsistency
How can anyone go to work after being awake all night with insomnia, pain, or restless legs? How can anyone go to work not knowing if some weird condition will suddenly kick in? Teachers in the classroom cannot stop for a rest and some pills!
How on earth do you brave workers manage the inconsistency of this disease? Do you ask the boss if you can lie down under your desk for a 20 minute nap in the afternoon?
Do you give all your "on" time to work? Then, at the end of the day, are you so exhausted that you need to rush home to bed, rather than spend time with your family, cook dinner, exercise, mark paper, or prepare new lessons?
How do you do it?
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