Yep, you read that right. Seems so simple, right? But 1 year ago I could not manage the task of shaving my legs AND taking a shower in one day. The fatigue was just too much. Prior to my diagnosis of RA I showered daily, sometimes twice a day, and shaved my legs daily. Even in the winter time! I just couldn't stand the feel of my legs on sheets at night without doing that. Battling with RA made me give it up to conserve energy. I just could not complete the two tasks together. Four years ago I would never have imagined a time in my life when those simple tasks nearly took everything out of me, JUST TO START MY DAY. Never mind that is just the start of the day and I still had a full day of my job, house, cooking, business and family to tend to. And the never ending pain. That alone will make you tired, but there is something about RA fatigue. I have had to pull over in a truck stop just to take a nap when driving. Because I could not make it home safely if I did not do that. Blogger Christine Miserandino summarized living with a chronic illness perfectly when she came up with the Spoon Theory example. Each day you wake up with a number of spoons. The spoons represent tasks. You have to decide that morning how many spoons you have to use by the number of tasks that you have to accomplish in your day. If you are not careful, you run out of spoons really quick. I have learned to adjust my life, even if it means saying no to something I want to do. It is imperative that I get 7-8 hours of sleep a night. I plan accordingly, even if doing so seems selfish to some.
Yesterday evening I asked my husband to help me open the lid to a water filter pitcher that had been giving me fits. He got it open and then proceeded to show me how to do it. I told him I knew how, I just couldn't get it open. He then insisted I use two fingers to slide the lid open. I turned from my task and looked at him and said "I can't." He knew then it was because of my limitation with my hands. I didn't have to say more because prior to 2019 you would have never had me use those two words. He then shifted gears, grabbed a butter knife and pried the lid back open. Once he was satisfied it worked, he showed me what he did so that I would see how to do it on my own. It is not that he doesn't want to help me, but he can't be around me every moment of every day and he knows I get frustrated when I can't do something anymore by myself. The butter knife is still sitting next to the water filter system. And it makes me smile. Thank goodness he understands my need to maintain my independence as long as I can, but helps when I need him to.
Today I am better and stronger because I am searching and learning ways to make my life easier and to control my pain. I hope and pray I am on the road to remission. I am able to get out and do more social things and that is helpful. But I count my spoons each morning and make sure I don't lose any more than I have by the end of the day. It is a delicate balance. And unless you live with a chronic disease like I do, it is very hard to comprehend. The picture is of me yesterday at a Christmas parade. Something I have not been able to attend in two years. The road up from a chronic illness is exciting and nerve wracking with whether or not I can maintain where I am right now at least.
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