When I became chronically unwell, the last thing I thought I would need was a social calendar. At the time of my diagnosis, I spent many hours resting due to relentless fatigue. I almost deleted the calendar application on my computer. It just didn’t seem feasible that I would ever have any kind of social life again.
Five years later, I still battle consistent fatigue daily. In my opinion, it is one of the worst symptoms of systemic scleroderma. While some days are OK, many others are simply a write-off, and I cannot achieve much at all. Unfortunately, this unregulated state of affairs has created a mess.
Knowing that overdue catch-ups with friends are building up makes me feel really uncomfortable. I’m far too tempted to cram the socialization all in as soon as a good patch appears. I feel compelled to achieve everything I couldn’t while fatigued and resting. The problem seems to be the regulation of everything, and I cannot forecast when or for how long my fatigue is going to send me to my recliner.
Stuffing all the lunches with friends, shopping trips, and outings with my husband into a few days is horribly hard on my body! This, of course, means I overdo everything in a short period. It also provokes my fatigue cycle to begin all over again, usually more intense and longer-lasting than the previous one.
It has taken some time to recognize the destructive nature of this cycle, but I am now trying to rectify things. So, to regain control of this downward-spiraling cycle, I have had to introduce some boundaries, and my online calendar has been a godsend.
I think the biggest reason for the success is that the calendar is visual. One important factor is that I can preprogram in every other day as a rest day, and it gets blanked out with a particular color (purple in my case). I can see an entire week at a glance, which is one of the most effective aspects of the calendar. It makes me feel less anxious if I can see I have booked in all my catch-up dates with my friends and family.
When I encounter a fatigue episode, I simply message my friends online to let them know and offer a different date in a few weeks. Then I blank out all days in purple for a fortnight until I am well again, safe in the knowledge that my social life is still alive and well, but just on hold.
Being unwell in any capacity can introduce circumstances that take away a patient’s sense of control over their lives. Managing to maintain social contacts and events is one of those circumstances. I also think that losing the ability to spend time with friends and get out of the house is destructive to one’s mental and emotional well-being, and causes unhealthy isolation.
Isn’t it marvelous that a simple computer application in the form of an electronic calendar system has helped me to handle these challenges? I continue to feel connected to all my significant others even when I am confined to my recliner for a couple of weeks. Yay for technology!
Note: Scleroderma News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Scleroderma News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to scleroderma.