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I remember when I longed for the weekends to arrive, back when I was working full-time. That was only five short years ago, but it seems like a whole different lifetime to me now. I know that everything changes, regardless of whether or not you have chronic illness, but what surprises me is how living with chronic illness making everything seem paradoxical.
How I have come to view the weekends is a very good example. For many people, the weekends represent a pleasant and welcome break from work and the daily grind of the week. Weekends epitomize freedom, fun and frolic. As my friend Cynthia wrote on her blog, weekends are for wearing flip flops, the casual and carefree symbol of the weekend.
For me, the weekend can be perilous. It starts with disruptions in my sleep schedule, like when my husband wants to go to bed later and sleep in the next morning. When he gets up to go run his errands Saturday morning, he inadvertently wakes me up with this chain reaction: he shuts the bedroom door, wakes the dogs up and takes them out, the dogs start barking, I get woken up. To top it off, the puppy starts whining when he leaves and I often can't get back to sleep.
Another highlight of the weekend that I look forward to is having my husband at home all day. However, taking advantage of his presence gets me in some trouble. During the weekend, I try to engage him in the tasks that require his assistance and I wind up being torn between trying to get more things accomplished versus sticking to my rest and pacing routines. While I often manage to avoid getting flared up, I definitely spend more time out of my energy envelope that I usually do during the week.
Finally, the weekend has always been synonymous with getting together with family and friends. Problem is, socializing with my friends and family is more difficult for me now. I still yearn for social contact and enjoy being with other people, but physically and cognitively socializing has become exhausting and uncomfortable. In a noisy setting, I struggle with being both easily distracted and overwhelmed by the stimuli. The mere act of paying attention and engaging in conservation drains me. Sitting for long periods of time can be physically uncomfortable, but where in public can you lie down for a few minutes? Going to the movies has become a special form of torture, with the booming percussion, seat shaking loud sound effects and overwhelming visuals. And forget about dinner and a movie: it's one or the other for me now.
The real danger for me, just like good days, is the push to keep up and keep going at the pace my companions set. I am often very distracted and unaware of myself in the presence of other people, even when it is just my husband, and frequently discover that I have spent my social time way out of my energy envelope by the time I finally arrive back home. I manage the danger of social contact by limiting the number of social engagements I committed to and getting extra rest before, during (if possible) and after the outing.
So for me, the weekends have lost some of their shine and rosy glow. I won't go as far as to say that I no longer enjoy the weekends, but the weekends are definitely a challenge. So after a three-day weekend for my husband, I really need tomorrow to recover. You know, kick off those flip flops, lay down and rest.