Having a chronic illness is a lot like having a job. For some people, it's a full time obligation. I'm lucky; mine is just part-time.
And, of course, the head honcho at Chronic Illness Inc. is the craziest, most mercurial, unpredictable nut job. Sometimes, everything is cool. But sometimes, out of nowhere, antibodies are called into action to do things that don't make a lick of sense ("Boss, why exactly are you attacking my salivary glands today?").
I don't think healthy people understand how much time it all takes up. Running between doctors' appointments, picking up prescriptions, following up when--invariably--something goes wrong with filling the prescriptions, watching our schedules so we don't make ourselves sick. . . and all the endless waiting: in waiting rooms, on hold, in line.
The disease means we can't do as much as other people, but it also means we have more things we need to do. I guess that's irony?
Now that I've added school to the mix, I've realized how important it is for me to rely on other people, which is really hard for me. I like to be the person other people turn to, but I've noticed that a lot of people are actually glad to have a chance to return the favor. Considering how much I enjoy helping, it shouldn't be a shock . . . but it is. It's a wonderfully amazing surprise.
Even so, I really wish I had a personal assistant just to help deal with my second-shift job of managing my illnesses.
What about you? What part of having a chronic illness is the most work for you? How do you cope?
I have the hardest time managing my energy so I have enough for my family in the evenings and weekends.
ReplyDeleteI agree. There's just so much we need to balance.
DeleteIt really depends on if I'm having a really bad flare or not. When I am having a flare it is the mobility/pain factor. On good days, it is the fatigue factor.
ReplyDeleteP.S. Ms. Sjogren's Style, I know this isn't the place, but I've been looking for your email all over here so I could (a) tell you how much I love your site and (b) ask you for a guest post/ interview for my blog spot: http://positivelyfibro.blogspot.com/. I have a feeling a lot of my visitor's would love your flare wear posts like I do; fibro girls need flare wear too! :)
There are always so many dimensions to an illness, aren't there?
DeleteAs for my email, you can reach me at elisa@sjogrensstyle.com. I'd love to hear from you!
I cope by staying organized and keeping a list of priorities around. I attack the list when I'm feeling good. When I'm having a flare, I take care of myself knowing it will just last longer if I don't.
ReplyDeleteA list of priorities is a great idea--sometimes when flaring, I feel like I can't sort that stuff out; having it thought-through ahead of time would be a big help.
DeleteI cope by gathering up knowledge and sharing and storing it. Knowledge and health literacy takes a long time to develop but it is so much easier than it used to be.
ReplyDeleteThere are so many smart people blogging, and talking on Twitter. It changes the way you look at the world
But I agree on the time it takes. It is a LARGE part time job
I agree about the importance of being informed. I try to look at it almost as a hobby (hence the blog) so that I don't get frustrated about the time it eats up. I'm learning, and learning is wonderful regardless of the subject.
DeleteI agree with Anet: research gives me a sense (perhaps an illusion!) of control over my Sjogren's, but it also takes a lot of time and energy I used to devote to other things. I spend the most time researching nutrition and testing recipes, and attending as many yoga classes per week as time and energy will allow.
ReplyDeleteIt's so challenging to find the balance. Things like yoga that help with the disease and are enjoyable and good for overall health are great uses of our time.
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