Im Kampf gegen eine unsichtbare Krankheit wie Fibromyalgie sind Fremde nicht immer offensichtlich. Wenn er eine Einladung ablehnt oder sich dafür entscheidet, den Aufzug anstelle der Treppe zu nehmen, ist es für die Menschen allzu einfach, die Gründe dafür anzunehmen – ohne zu bemerken, dass er tatsächlich nur alles tut, um seine Symptome zu kontrollieren.
Wir arbeiten mit der National Fibromyalgia Association zusammen, um unsere Facebook-Communities zu fragen, was alltägliche Dinge sind, bei denen die Menschen nicht erkennen, dass sie in ihrer Fibromyalgie verwurzelt sind. Ihre Antworten enthüllen die geheimen Kämpfe, mit denen Fibro-Krieger jeden Tag konfrontiert sind, und wenn Freunde und Familie aufpassen, werden sie sehen, wie schwer ihre Lieben mit den schmerzhaften Auswirkungen von Fibromyalgie fertig werden.
Folgendes haben sie uns gesagt:
1. „Duschen Sie nicht jeden Tag und waschen Sie nicht. Die Leute sehen mich als faul, aber in Wirklichkeit priorisiere ich, was ich jeden Tag tun kann. Sonst wäre ich einen Monat weg. Für die Menschen ist es schwierig zu verstehen, wie viel Energie und Mühe erforderlich ist, um die einfachsten Aufgaben auszuführen. „
2. „Ich halte viele meiner Vorhänge geschlossen und die Helligkeit der Geräte niedrig. Wenn ich einen Blitz habe, tut es sehr weh. Mein Geruch und mein Ohr sind zu empfindlich. Wiederholte Geräusche sind für mich eine Qual.
3. „Nickerchen. Ich hasse es, tagsüber zu schlafen. Ich fühle mich elend, wenn ich schlafe, aber wenn ich nicht ins Bett gehe, werde ich fallen. Einige meiner Freunde lieben es, ein Nickerchen zu machen und zu kommen, wenn ich ihnen erzähle, dass ich den Nachmittag im Bett verbracht habe. Für mich ist Nickerchen jedoch nur ein weiterer Weg, auf dem mein Leben jetzt nicht mein ist. „
Das Bild kann enthalten: eine oder mehrere Personen und einen Vordergrund
4. „Ich habe meinen Kiefer sehr fest angezogen, als ich verletzt war (es scheint, dass ich seltsame Gesichter zeichne!). Die Leute denken auch, dass ich seltsam bin, keinen Alkohol zu trinken, aber es reagiert mit meinen Medikamenten und ein Kater fühlt sich millionenfach schlimmer an! „
5. „Ich reibe oft meine Hände und manchmal meine Füße. Die meisten Leute denken nicht, dass es mehr als Selbstzufriedenheit ist. Die Realität ist, dass ich jeden Tag unter Schwäche und Schmerzen in meinen Händen, Armen und Beinen leide. „
6. „Dieses Wochenende war ich auf einer Hochzeit. Die meisten Leute an meinem Tisch tanzten und versuchten mir zu sagen, ich solle mich ihnen anschließen. Sie wissen nicht, dass ich durch den Schmerz tapfer gelächelt habe und dass es ein zweistündiger Kampf war, nur um mich anzuziehen und zu erscheinen. Es gab keine Kraft mehr zum Tanzen.
7. „Google-Earthing überall, wo ich hingehen muss (oder ich habe vor, dorthin zu gehen), und ich war noch nie zuvor dort, um zu beurteilen, ob das Gebäude Treppen (innen und außen) und einen Parkplatz in der Nähe haben würde. ”
8. „Ich trage viele diffuse Socken, weil ich Probleme mit kalten Füßen habe. Fibromyalgie bedeutet, dass meine Schmerzen bei Erkältung noch mehr zunehmen. Ugg-Stiefel sind auch nützlich, weil sie weich und warm sind. „
9. „Vermeiden Sie Familientreffen so weit wie möglich. Ich komme aus einer sehr großen und starken Familie, die gerne kuschelt. Ich bin von allen umgeben und die Kinder rennen und alle reden über Lachen und Spaß haben. Niemand merkt, wie groß die sensorische Überlastung für mich ist. „

10. „Eines der besten Beispiele sind die„ Probefahrt “-Stühle, um die bequemsten zu finden. Bei der Arbeit gibt es im Hauptarbeitsbereich mehrere Bürostühle, die von mehreren Personen in allen Schichten benutzt werden, so dass sie sich häufig bewegen und tauschen. Wenn ich in diesem Bereich arbeite, sitze ich einige Sekunden auf jedem Stuhl, um zu sehen, welcher mir tagsüber am wenigsten Schmerzen bereitet (die Stühle sind gleich, aber einige sind älter oder werden häufiger verwendet als andere). Leute, die nicht wissen, dass ich Fibro habe, finden es vielleicht komisch oder lustig, aber ich denke, selbst Leute, die es wissen, scheinen es manchmal „lustig“ zu finden.
11. „Ich bin fast 27 und habe die Erinnerung an einen Goldfisch. Mischen Sie die Wörter so schlecht und stottern. Die Leute merken nicht, dass ich Fibromyalgie habe und deshalb tue ich es. „
12. „Ich atme tief ein, als ich die Haustür zur Arbeit erreiche und lächle. Brust draußen, Schultern hinten … halte mein Gesicht “Mir geht es gut”, bis ich am Ende der Schicht in meinem Auto zusammenbreche. „
13. „Ich rede nicht viel, weil ich Fibro-Nebel habe und es für mich schwierig ist, ein Gespräch zu führen. Manchmal bin ich anderen gegenüber gleichgültig, aber das ist überhaupt nicht der Fall. Ich habe Probleme, die Wörter zu finden, die ich sagen möchte.
14. „Wenn ich länger als ein paar Minuten stehen muss, schwinge ich hin und her, um mich vom Schmerz abzulenken. Die meisten denken, es ist nur eine nervöse Angewohnheit, aber im Grunde ist es meine Schmerzkontrolle. „
15. „Gib mein soziales Leben auf. Ich gehe zur Arbeit und gehe nach Hause. Das ist alles was ich tun kann. Ich muss mich zwischen dem Kirchgang, Familienaktivitäten und dem Treffen mit Freunden für den Rest entscheiden. Und in letzter Zeit gewinnt die Ruhe.
16. „Manchmal habe ich einen wirklich schlechten Stoß und kann nicht ausgehen. Anstatt meine Schwäche zuzugeben, sage ich, dass die Kinder krank sind oder so, also gibt es keinen Schaden, es gibt keinen Mangel. Es ist mir unangenehm, das zuzugeben, und es macht sie noch unangenehmer / wütender / enttäuschter usw. “
17. „Ich verlasse die Arbeit am Ende meiner Schicht und gehe nach Hause. Ich verabschiede mich von niemandem, denn wenn wir uns unterhalten, wird es noch länger dauern, bis ich mich zu Hause ausruhen und ausruhen kann. „
18. „Laden Sie die Fernseher und Radios herunter, wenn Personen den Raum betreten. Durch die Empfindlichkeit gegenüber Geräuschen werden die Geräusche bei den unterschiedlichsten Geräuschen lauter. Jede hinzugefügte Person verstärkt die Geräusche, anstatt es schwieriger zu machen, etwas zu hören. „
19. „Wenn Sie einen zusätzlichen Arbeitstag von einem Ferienwochenende nehmen. Es geht nicht nur darum zu spielen und faul zu sein. Ich brauche Tage, um mich von einer Reise zu erholen, vom Kochen des Thanksgiving-Truthahns, vom Weihnachtseinkauf, selbst nachdem ich auf einem unbequemen Stuhl gesessen habe und mit Familie und Freunden ein Feiertagsessen gegessen habe.
20. „Im College merken die Leute nicht, dass ich ihnen immer sage:‚ Ich muss auf die Toilette, sei bei dir ‘, weil ich nicht möchte, dass mich jemand ansieht, während ich langsam meinen schmerzhaften Weg zum ‘Fußboden. Deshalb entschuldige ich mich immer dafür, dass ich der Letzte bin, der alleine aufsteigt. „
21. “Text statt anzurufen, weil ich nicht weiß, wie ich am Telefon klingeln soll, und ich kann den Text gut aussehen lassen, ohne zu handeln.”
22. „Ich nehme mir ab und zu ein paar Minuten Zeit, wenn ich ausgehe, wie wenn ich auf die Toilette gehe oder wenn ich die Küche in die Luft jage und mich kaum hinsetze und aufstehe. Lass mich die Erschöpfung und den Schmerz spüren, dann atme ein und aus. „
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