What Can We Do When Fatigue Strikes Suddenly?
Posy expects that we all have experienced "hitting a wall." At these times, we desperately crave going back to bed. It may be that we have worked productively all morning, doing housework, walking the dog, answering emails, participating in Zoom calls or whatever, and feel happy enough. However, when the cloud descends on our shoulders, we feel like collapsing in a heap.
Dealing with fluctuating energy levels
If you work outside the home, the urge to nap, or even take a break, must be an enormous problem - it's one Posy struggled for 10 years before being diagnosed. However, as she still did not know she had Parkinson’s, she was just appalled at her feeble level of stamina. Observing colleagues staying wakeful all day was baffling and disheartening.
Once Posy was diagnosed with Parkinson's and started taking the recommended medications, she was plagued by a terrible and complete insomnia. Although this compounded the fatigue that enveloped her on a daily basis, the heavy sleepiness was consistent in its timing, and now at home and not working in the school, she was able to plan her day around it. Posy was taking dance classes 3 times a week, swimming and walking in the beautiful countryside. Life was not bad!
But things change. A few years in, the wall can strike Posy at unexpected times. To compound matters, the pills are probably less effective now.
Inevitably, it is 2 minutes to the time when her phone alarm will inform her to take her next pill. (Three cheers for levodopa!) However, sometimes, oddly, Posy should be fully "on" as she took her pill an hour earlier. This seems more worrying. (We like to know where we are with managing our condition, don’t we?)
What should we do?
Posy imagines we all have our own ways of dealing with this conundrum. Instead of writing off the rest of the day in bed, perhaps all we need is a short-ish break and the reassurance that we may nap if we need to.
On a good day, we may take a few deep breaths, walk outside for some fresh air, or make a drink and this will be enough to reset our mood. (If at a place of work, we can at least lean back in our chair, stretch up our arms or open a window!)
Are we so anxious about being too tired to manage the next part of the day that we want to give up completely? Depression hovers over us Parkies, waiting for us to be too tired to cope. Some days the fatigue seems insurmountable, and Posy is desperate for some sleep. Groggily, she toddles off to bed for a long nap. Of course, no sooner has she cocooned herself in a soft blanket than her brain pops awake again!
Taking breaks instead of pushing through fatigue
What happens when we decide to push through the pain and fatigue? Do we burn out and hasten the progress of our disease? Many times, especially when Posy has been composing music, she cannot bring herself to stop for a sleep anyway and will work for 48 hours straight. She certainly feels the cloud trying to descend, but she is so engrossed in her project that she is able to continue. She knows that once she stops, she drops!
From her own experience, Posy has come to realize that, certainly at this stage in her disease, the answer is usually to change her activity for at least 5 minutes. She is constantly amazed at what a difference this makes!
Have you taken our In America survey yet?