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台灣纖維肌痛症關懷協會電子報
報主:台灣纖維肌痛症關懷協會
創刊日期:2017-10-13
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台灣纖維肌痛症關懷協會電子報
發報時間: 2017-10-22 11:00:00 / 報主:台灣纖維肌痛症關懷協會
[公益聯播]家庭托顧服務職前訓練 服務員招募中!
本期目錄
謝謝女神卡卡願意公開分享她的掙扎...
謝謝女神卡卡願意公開分享她的掙扎...

協會重要告知

原有的自救會已經廢除,

請支持內政部唯一立案通過台灣纖維肌痛症關懷協會,

臉書社團: TFA台灣纖維肌痛症關懷協會

聯繫信箱: tfa1060611@gmail.com

 

與纖維肌痛症戰鬥的過程,

就像一場漫長的馬拉松,

希望能透過病友的親身分享,

多點理解,多點支持,多點鼓勵,

關懷,可以讓病友更有力量,

就能攜手一起跑下去。

 

 

謝謝女神卡卡願意公開分享她的掙扎...

本文由協會病友Fibro May 提供

我必需承認我之前並不喜歡女神卡卡。 有可能是年紀的關係吧,但那方面我就不多說了。 不過自從看了最近火紅報導的『卡卡:五呎二吋』紀錄片,我對她的感想有了很大的改變。 看到她無私的分享她掙扎身體的疼痛跟心理的創傷,我不禁潸然淚下。

就像卡卡說的,身體的疼痛是真實的雖然別人從外表上看不出這隱形痛。 就算早上要起床,對纖維肌痛的病人來說就是每天的ㄧ大挑戰。

ㄧ早醒來的晨僵就像好幾噸的磚頭壓在身上,動彈不得。 我需要小心翼翼的動動雙腳跟雙手,慢慢的活動每小吋的身體。 過ㄧ陣子我才能開始做迷你橋式伸展下背,抱著雙腿左右搖擺背部,最後在做嬰兒式的動作來放鬆背部的僵硬。 最後我才能緩緩的滾出床。

以往能ㄧ醒來就跳出床已經是遙遠的記憶了。 在溫暖的天氣,每天平均都要花最少30分鐘才能起床。 冬天時就需要更久的時間才能起床因為身體受到低溫跟濕冷的影響。 氣溫敏感是另ㄧ個因子會讓有些人誘發身體得不適。

至少ㄧ個小時過後我才能準備好要出門。 在好的情況下,出門是沒有問題的。 但是在不舒服的時後,極度的疲倦有時會突然降臨讓我的腦起霧,頓時寸步難行。 你可以想像那天ㄧ整天下來會是如何的呢?

所以有女神卡卡這樣重量級的明星公開分享她的掙扎,是給上百萬纖維肌痛者很大的希望。 她是位好的模範,讓我們同樣在這病痛折磨裡知道我們並不孤單的。 自從她的紀錄片放映後,許多媒體就開始有報導關於纖維肌痛的新聞。 希望當越來越多人開始分享他們的經歷路程,越來越多的人會了解纖維肌痛症是什麼,有更多的 經費去作研究,最終能找到治癒的方法!

 以上是我每天早上要經歷的過程,那你的過程是什麼呢?

 

Thanks Lady Gaga for Sharing Her Struggles with Fibromyalgia

I have to admit I was never a fan of Lady Gaga.  It could be an age thing so let’s leave it there.  However, my perception of her changed once I watched the much publicized “Gaga: Five Foot Two“.   Her openness to share her struggles with the body pains and the psychological affects brought me to tears.

Like she said, the body pains are real although people cannot see from the outside.  The mere act of getting up in the morning is the first struggle that people like us face with every day

The morning stiffness like tons of bricks piled up on top of the body is the first thing that welcomes to me.  I have to gently wriggle my feet and my hands to begin slowly move bits of the body.  Eventually I could move enough to do a mini bridge to stretch the lower back, rock my back from left to right by holding my legs with both hands, then do a child pose to relieve the tense muscles in the back.  This is when I would slowly roll out of the bed.

The days of leaping out of bed were in the distance memory.  On an average it would take me at least 30 minutes to get out the bed in a temperate weather.  Sometimes it would take longer during the winter season with cold temperature and dampness.  The temperature sensitivities are another key contributors to the discomforts in some people.

At least an hour would pass before I could be ready to head out of door.  On the good days, I could leave the house without any issue.  On the bad days, the exhaustion would descent without warning and overtake my mind like a fog so I could barely get out of the house.  Can you imagine what the rest of the day would be like?

So to have someone like Lady Gaga so candidly shared her struggles publicly is truly a blessing to millions of fibro sufferers.  She’s a role model for many of us struggle with this invisible disease, knowing that we’re not alone in this.  There has been a surge of news coverage writing about Fibromyalgia.  Hopefully as more people come forward to share their experience and stories, there will be an increasing awareness and growing interest to fund for more research and fight for a cure!

So what’s your morning routine like?

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