如何打破规则有助于我的ra

反对传统思维(任何人吃早餐?)是与RA生活更快乐的关键。

经过Lene Andersen, MSW Patient Advocate

我有谷物for dinner. Again. While crunching my way through a bowl of cornflakes dotted with plump raisins and slices of banana, I felt both content—it’d been a painful day and the flavors were like a hug for my tastebuds—and vaguely guilty.晚餐时间适用于适当的饭菜,炎热的蛋白质和绿色my mind opined with a sniff. At that moment, no “proper meal” could make me happier than this bowl of breakfast food that took no time and energy to prepare. I began thinking about the rules we follow every day—could breaking them make life with chronic illness easier?

这不是关于法律撰写的那种规则。有很好的理由你应该戴安全带,照顾孩子,并按时支付租金或抵押贷款。我确实有一些不可谈判的管理我的ra:我总是服用我的药物,在我的感激期刊中写作,我的强制下午休息时间(又名午睡)是神圣的。但是,每天我们也遵循数百个未说出口的规则,其中许多人可以在具有类风湿性关节炎(RA)或任何其他类型的慢性健康状况时使生活变得非常困难。

These days, much of the Western world eats cereal and breads for breakfast, saving larger and hot meals for dinner, at a time you might be too exhausted to actually make such a meal. We feel guilty if the bed isn’t made every day and grungy if we skip our morning shower, but why? No one but you sees your bedroom, and the only person that’s offended by one missed shower is, well, you. So it might make sense to leave the bed alone and shower every other day in favor ofsaving your spoonsfor more important tasks later in the day. Chronic illness or not, weighing life’s expectations of us is about give-and-take. Of course, these rules aren’t limited to your daily life-management tasks; they affect every part of what we do. We’re “supposed to” build our careers as high as possible (exhausting), own a house (so much work), get married and have children (not for everyone), and those are just the obvious ones.

很容易建议你应该打破对你不起作用的规则,但到达Nitty-Gritty可能有点棘手。从识别你的“能量糟透了”。问问自己在哪里花了很多时间,让你感到遗憾的是什么,你经常避免或拖延什么?如果你头脑中的本能声音立即说:“但我必须......”这是一个标志,它可能是你不应该遵循的规则。

Here are some rules you might want break:

Rule #1: Stick to traditional family roles.Despite changing times, there is still that weird rule about women doing most of the housework and I think it’s time to stop that. Share the chores equally at home—after all, vacuuming, walking the dog, and cleaning the bathroom are straight forward enough for even kids to help out. While you’re at it, take care of your skin by showering only three times a week and have that nap you’re craving.

规则#2:房屋维修是成年期的巅峰。为什么不通过我们的文化神话更加变化,为什么不再混淆?如果您的房子上的较难或楼梯是一项挑战,请在建筑物中租用一座住宅,其中升级的电梯负责维护房产并修复破损的内容。而不是浪费金钱 - 因为神话宣称租赁可以实际上增加你的现金流量或给你金融上限,以将工作改为一个更容易你的身体,但可能少付钱。

规则#3:从不为自己做的事情支付别人。Here’s another myth: Hiring someone to help is an unnecessary luxury. Delegating means you have more time and energy to do other things and if you have the funds, paying someone to do the physical work that can be so hard on your body is a no-brainer. Imagine how much better you’d feel if you weren’t worn down. If you don’t have the money to hire the help you need, consider the barter approach. For instance, you might have a neighbor who’s a whiz at washing windows but is looking for help with their taxes. We all have different skills and yours might be just the thing that can help someone else out of a jam, while they are doing the same for you.

规则#4:从不展示你的病情。ra会影响你生命中的每个方面,但不知何故,我们被编程为士兵,僵硬的上唇,好像什么都没发生。那是邦克斯。所以服用你的药物在别人面前(多年来一直这样做),告诉人们有什么样的ra,和谈谈需要一个小睡。照顾好自己并不弱。事实上,优先考虑你的健康是你能做的最强大的事情之一,而且慢性疾病的做法与你健康的朋友一起去健身房没有什么不同。

规则#5:永远不会违反承诺。与朋友和家人取消事件,因为你的味道感觉很糟糕,因为有罪和fomo。它也不限于在有慢性疾病 - 小孩的父母一直在他们无法获得保姆时做到这一点。所以弄乱了计划。如果你被晚餐筋疲力尽,请做午饭。如果你伤害太多才能离开房子,建议在你的地方取出或者,在你的Ra真的活跃时,做虚拟访问。毕竟,我们现在正在使用Zoom。

Rule #6 What others think is important.大多数人都会尊重你的选择,因为你开始违反规则,甚至可以加入你。对于那些没有,练习几个Snappy的再兴奋剂的人,所以你可以在没有情感击中的情况下摆脱这样的情况。Try “having a housecleaner means I’m able to spend more time with my kids” or “now that I’m renting, I can afford the trip to Rome I’ve dreamt about since I was in high school” (post-pandemic, naturally). Reminding yourself that the changes you’re making are not taking away from your life, but rather adding value can be an important building block in learning not to care about the opinions of others.

这是最大的外卖:没有正常的。那么为什么不以一种帮助你更快乐而且累了的方式生活?如果早上睡觉(比如说)在你脸上露出笑容,请做到。但如果它没有,那么在公司结束时,只需将大门关闭到卧室。

至于我,我买更多的玉米片。

遇见我们的作家
Lene Andersen, MSW

Lene Andersen is an author, health and disability advocate, and photographer living in Toronto. Lene (pronounced Lena) has lived with rheumatoid arthritis since she was four years old and uses her experience to help others with chronic illness. She has written several books, including Your Life with Rheumatoid Arthritis: Tools for Managing Treatment, Side Effects and Pain, and 7 Facets: A Meditation on Pain, as well as the award-winning blog, The Seated View. Lene serves on HealthCentral's Health Advocates Advisory Board, and is a Social Ambassador for the RAHealthCentral on Facebook page, facebook.com/rahealthcentral. She is also one of HealthCentral'sLive Bold,现在生活英雄 -看着她与ra的令人难以置信的生活之旅。