五种困扰狼疮病患者的因素（附译文）

五种困扰狼疮病患者的因素（附译文）
摘自北美SLE病人论坛巜New life outlook》，本人翻译，有不准确或误导之处，请见谅。

Five Things That Bother People With Lupus
Having a positive attitude can be a beautiful thing. But when you suffer with a chronic, often debilitating, disease that
few people understand
(or even know what it is) the odds are stacked against you when it comes to maintaining positivity.

The effects lupus has on the body can be anything from mild to devastating — a nuisance you must endure to a life-threatening attack. Having lupus can feel like a rollercoaster ride where you just don’t know how fast and extreme that next drop will be. When you survive the big drop you feel victorious, but when you are climbing slowly towards a freefall, well, that confidence is gone

That fear and frustration can lead to changes in your mood, how much you can tolerate (without losing your cool) and in general how you perceive things in your life. Challenges, work, weather, and the behavior of others can get the better of you when you are in constant pain, horribly fatigued, and battling to survive another day.

There are several things that seem to bother me more when I am in the midst of a flare. Everything from people’s lack of understanding to everyday challenges. I am a part of several lupus support groups and I have learned it is fairly common for someone with lupus to feel like their life, and everyone in it, is slowly pushing them to the limits.

1. Weather Extremes When We Have to Be Outside
I am a mom of four and as hard as I try to avoid extreme cold or hot temperatures, as well as excessive direct sunlight, there are times I have to endure it.

My boys play soccer in fall and baseball in the spring. Though I feel that I must be there to support them, it is usually something I feel I go into “survival mode” be able to endure.

Typically, I force myself to go and then feel irritated that everyone else at the field is only mildly annoyed by the weather, while it is almost unbearable for me. As I hide under trees from the sun or sit hugging myself and going numb from the painful cold, I see other parents laughing and enjoying the moment.

I am jealous. I admit it and it is not the right way to feel, but it happens.

2.When Others Compare Their Life to Ours
I have a friend who constantly boasts about how hard she is working out, how driven she is to have a beach body, and how hard she works at her job — though she has a less than average work week compared to most. Her Facebook statuses are always about how amazing life always is for her.

I get it. Your life is awesome, your health is amazing, and you have never struggled financially, but instead have traveled the world. Honestly, the way she talks it would appear that she never has a bad day and is convinced she will be rich and continue to travel, healthy and happy forever.

In the midst of a flare, this is a big button pusher for me. She has said her life is perfect because she is always happy (she has gone as far as to say there is no reason ever to be unhappy) and mine life is filled with challenges and lupus because we each get what we deserve.
It has not occurred to her that she is happy because she has not yet been really challenged. The comparison makes me resentful and yes, angry. Walk a mile in my shoes and see how happy you always feel.


3. Horrible Health Advice
While I am struggling to get through a flare, the last thing I want to hear is how I should be taking a supplement someone has tried that boosts the immune system.

The only way this is more irritating is when I know for a fact we have had this conversation before, and I have already explained that people with lupus must
calm their immune system
, not boost it. I think this pushes my buttons because it reminds me that this person has no clue what lupus is and the battle I face.

4. An Over-Packed Schedule
If I am pushed to the limits with a schedule of things to do on a day when lupus has the better of me, I stand a 50/50 chance of getting very moody with a strong possibility of tears before crawling into bed that night.

Not only are endless activities or demands exhausting and more than I can bear during a flare, but the fact that I am expected to keep up with a crazy schedule makes me feel invisible. It is like nobody remembers I might be struggling to keep going.

If it is family that expects this of me, it hurts all the more. I look out for them, so why wouldn’t they look out for me and my health?

This happens a lot around the holidays and frankly, I can count on being aggravated every Christmas by a daily demand to be somewhere and be actively social. Lupus and social do not always mix, and my ideal schedule reflects that fact.

5. A New Pain or Sudden Flare
I cannot even begin to describe the frustration when I am trudging through the week and suddenly am stricken with a whole new set of symptoms and pain. I can be fine one day and wake up with pleurisy (swelling in my lungs) and incredible pain caused simply by breathing.

I can wake with my feet and hands painfully swollen or horrible sores in my nose. Each day has some level of pain, so when some new one joins the party it is enough to make me feel very overwhelmed and angry.

I suffer from the “why me?” or “what did I do to cause this one?” attitude during these times. It shakes my inner strength to the core when it feels like each day is nothing but an opportunity for me to endure even more pain.

A lot of the time, I did nothing to aggravate my symptoms and have no logical reason for the attack. It simply is a daily possibility that my battle might increase and when it does I feel angry and caught up in the inner turmoil of how unfair it all is.

Find Comfort
I think one of the hardest parts about having lupus is the emotional toll it takes to face each day and to endure the pain and threats to your survival, while the people around you seem to be blissfully unaware of the war you are fighting.

My greatest source of comfort can be found in the few who do understand and support me through my daily fight with this disease, and the realization that these emotions are natural and to be expected given the battle I am in. I may still get aggravated, but there is peace in realizing that it is normal to feel this way.

译文
烦扰红斑狼疮病者的五个因素

有一个正面积极的态度可以是一件美好的事情。 但是当你患有一种慢性,常常使人衰弱的疾病，而这种病很少有人理解 (甚至不知道它是什么)的时候,你永远保持正面积极性的可能性就不大了。

狼疮对身体带来的影响可以从轻微到严重,最讨厌的是你可能必须忍耐和承受一个致命的攻击。患有红斑狼疮就像上了一个过山车,你只是不知道有多快和最后会落到什么地方。当你在一次大的坠落后活下来了你会感到胜利了,但是当你慢慢往上爬而爬向的是一个自由落体时，这种信心是一去不复返了。
恐惧和挫折会导致你的情绪变化,你能忍受多少(在不失冷静的情况下）你生活中遇到的问题和挑战，工作、天气、和他人的行为可以使你更好? 在你处于一种持续疼痛,非常疲惫,为明天还能活着而努力的状态下。
有几个事情似乎比我复发时更严重困扰我。来自对疾病缺乏了解的人们的每件事情都成为了日常的挑战。 我是几个狼疮支持团体的成员从那里我了解了这种生活感受对于狼疮病人来说相当常见，每个人都是这样，慢慢地把他们推到极限。

1。 极端天气时我们必须在外面

我是一个有四个小孩的妈妈。我试着努力避免极端寒冷或炎热的气温,以及过度的阳光直射,有时我不得不忍受它。 我的男孩子们在秋天踢足球和在春天打棒球。 不过我觉得我必须要支持他们,这是我通常要进入“生存模式”以能够忍受。 通常,我强迫自己去,然后感到恼怒,当其他人在现场只是为温和的天气而烦恼,虽然这对我来说几乎是无法忍受。 我躲在树下避开太阳或坐在那里拥抱自己,感觉麻木的痛苦的冷,我看到其他父母笑着,享受这一时刻。
我嫉妒。 我承认,这不是正确的方法,但它会发生。

2，当别人比较他们与我们的生活。

我有一个朋友经常吹嘘她工作多么努力,她怎么拥有海滩晒过的身体,和她多么努力工作,尽管她有一份低于平均每周工作时间的工作。她的Facebook状态总是如何神奇的生活。好的， 我知道了。 你的生活太棒了,你的健康棒极了，你从来没有陷入经济危机,而是已周游世界。 老实说,她谈起来像是看来她从来不会有糟糕的日子,她相信她会有钱,继续旅行,永远健康快乐。 在复发时，这对我来说这是一个大按钮。 她说她的生活是完美的,因为她总是高兴(她已经就说没有理由不快乐)而我的生活充满挑战和红斑狼疮,因为我们每个人都得到我们应得的东西。
这些事情在她那里没发生过，她很开心,因为她还没有真正挑战。 这种比较让我不满,是的,很生气。 我走我的路,看着你总是感到快乐。

3，可怕的保健品建议

虽然我努力抗过一次复发,而最后我听到的是我应该如何补充营养保健品，有人试过的可加强免疫系统的保健品。这更刺激的方法就是当我知道我们有这个谈话之前,我已经说过,红斑狼疮患者必须要做的是平乡景他们的免疫系统 ,而不是提升。 我认为这又按了我的按钮,因为它提醒我,这个人已经不知道什么是红斑狼疮而我面对的是怎样的战斗。

4， 一个超负荷的时间表

如果把我推至极限,要做的事情安排在一天,对于患红斑狼疮的我,我有50/50的机会会非常喜怒无常而且那天晚上上床之前会流眼泪。 不仅是无限的活动或要求让我在
疲惫和复发期间受不了，而且事实上,一个疯狂的计划让我感觉到我被无视。就像没人记得我可能难以坚持。 如果是家庭成员在做这计划，我就更感觉痛苦。 我关照他们,可是他们为什么不照顾我和我的健康呢? 这经常发生在节日。坦率地说,我可以罗列出在充满一堆计划需要外出和社会活动的每个圣诞节我承受多大压力。 红斑狼疮和社会并不总是能融合,我自己理想的日程表反映了这一事实。

5，一个新的疼痛或突然复发

我甚至不能开始描述我有多么沮丧，当我一整个星期都在与一套突然出现的全新的症状和疼痛搏斗。 有一天我可以很好,可醒来时却与胸膜炎(在我的肺肿胀)和令人难以置信的痛苦战斗，而只是因为呼吸引起的。
我可能在我的脚和手疼痛和肿胀或可怕的鼻腔溃疡中醒来，每天都有一定程度的疼痛。所以当一些新成员（症状）加入这个聚会时，这足以让我感到不知所措和愤怒。
在这些时候我会有这样的态度，＂为什么是我? ”或“我做了什么导致这个？＂，它摇动了我的内在力量的核心,感觉就像每天只不过是一个机会让我忍受更多的痛苦。
很多时候,我什么都没有做就加重了症状,也没有任何逻辑上受攻击的原因。 它仅仅是每天的一种可能性，我的战斗可能会增加,我感到愤怒,陷入内心的骚动，这一切是不公平的。

找到安慰
我认为患有红斑狼疮的人最难的部分是情绪控制上每天需要面对和忍受痛苦，和威胁到你的生存,而你周围的人似乎丝毫不知道你在做一种怎样的抗争。 我能找到的最大的安慰的来源是少有的几个人能理解和支持我在日常生活中与这种疾病抗争，并意识到这些情绪是自然的，会考虑到我在战斗。 我的病情可能还会加剧,但能够平静地意识到这是很正常的感觉。