The most common and frustrating part about how Sjogren’s affects energy, is that, for most of the day, energy is high. By evening, I am fading fast.
I wake up feeling pretty good given some of the ongoing symptoms of Sjogren’s Syndrome. My work day is full physically and intellectually. I maintain working relationships and make decisions made.
Lunch time is a chance to take a break. I get some chores done at home and do necessary maintenance on my eyes and my teeth. As I return to work after lunch, I still feel pretty good.
As the work day moves on, I feel myself loosing a bit of patience with problems that come up. I continue to address all that needs to be done, but I can often sense that I am a bit less quick.
There is a sense of accomplishment with each day of work that I complete. I am an asset to the company, but I have also worked through dry eyes and dry mouth. Although my joints ache intermittently, that has not slowed me down.
Done for the day, I head home looking forward to my evening. Dinner conversation is great, but I can’t help but talk about my frustrations during the day, which seem amplified as I talk.
With a quick review of the evening’s errands, we’re off to get things done. As we begin shopping here, returning something there, I begin fading fast. After an errand or two taking maybe an hour, I find that I cannot concentrate on what is happening. I don’t want to get out of the car and walk into a store let alone from shop from aisle to aisle.
As soon as I am in for the evening, I get into my pajamas and relax….. usually in front of the TV because it doesn’t take much thinking and less activity. Often I fall asleep for the evening, sitting up in front of the TV. I generally wake up about 30 minutes before bedtime.
Again, after maintaining my eyes and teeth, I get into bed intending to watch TV. Usually, within 5 minutes, I am asleep until my alarm goes off in the morning. I am ready to start the day again.
I realize that decreasing stamina can set in as age increases. When I compare myself to my siblings and friends around my age, I think I am less active. I can do things, but for very short periods of time. Being aware of this causes me not to want to begin some activities which I think I will have to stop in relatively short order.
I take some medications to moderate the symptoms of Sjogren’s caused drowsiness. This only accentuates the fatigue I feel as the evening progress.
“Chronic fatigue is one of the most prevalent and debilitating symptoms in primary SS (pSS). Approximately 70% of pSS patients suffer from disabling fatigue, which is associated with reduced health-related quality of life.” This opinion was offering in the article “Primary Sjögren’s syndrome: too dry and too tired” collaborated on by Wan-Fai Ng and Simon J. Bowman
How Things Should Be.
Although I get things done at home, I need most of the evening and all of my weekends to build my energy for the coming work day and the next work week. I would like to see things reversed. It would be great to be doing things at home and with my family all day and recuperating in the evenings to do things at home again.
This is my goal.
Please take the time to leave a comment below. Do you find yourself able to work through the day, but needing the evening to recuperate?