Für einen Fremden können Dinge wie das Befördern des Aufzugs anstelle einer Treppe oder das Absenken der Partyeinladungen wie eine Reflexion Ihrer Persönlichkeit aussehen. Für einen Menschen mit chronischer Müdigkeit können dies jedoch Anpassungsmethoden sein, die für den Alltag wichtig sind.
Wir baten unsere Community für chronische Krankheiten auf Facebook, um uns mitzuteilen, was die anderen Leute aufgrund ihrer chronischen Müdigkeit nicht wissen. Ihre Antworten zeigen, welche Anpassungen im Alltag oft gemacht werden müssen, um Energie zu sparen, und dass gesunde Menschen nicht erkennen können, welchen Unterschied diese Strategien ausmachen.
Das hat uns unsere Community gesagt:
1. “Stellen Sie sicher, dass zwischen jedem erschöpfenden Fall und der Wiederaufnahme des Lebens ein” Tagesstempel “steht. “
2. “PJs die meiste Zeit des Tages tragen, wenn ich nicht ausgehe. An manchen Tagen ist es zu schmerzhaft, mich zu bewegen, und ich kann keine einfachen Aufgaben im Haus erledigen. Es ist manchmal peinlich. Ich fühle mich schlecht. “
3. “Meine Duschen planen. Ich habe zu Weihnachten einen Kommentar dazu abgegeben, wie ich mir wünschte, unsere Dusche würde unten arbeiten, weil ich meistens schnell duschen möchte, aber ich möchte nicht die Treppe hinaufsteigen. Der Freund meiner Schwester, der Schwester meines Mannes, sagte: “Wow, du bist so faul. “Ich habe damals Rot gesehen und er hat buchstäblich jeden Willen gebraucht, um es nicht zu nehmen”.
4. “Ich muss alles nach dem, was ich zu tun habe, planen und die Energie bekommen, die aus mir herauskommt. “
5. “Ich lehne mich buchstäblich ständig. An Wänden, auf Tischen, an Menschen, auf Karren. Ich gerate in Panik, wenn es nichts gibt, was mich unterstützen könnte.
6. “Ich verwalte jeden Aspekt und jeden Moment jeden Tages, um zu bestimmen, was ich tun kann und was nicht und was ich tun kann. Das allein ist anstrengend.
7. ” Ich lade keine Leute in mein Haus ein. Es ist immer ein Chaos und ich fühle mich schlecht, weil ich keine Energie habe, um es sauber zu halten. Ich trage jeden Tag PJs, es sei denn, ich muss raus. Mein Haus ist meine Zuflucht für das Weltgeschäft. Der einzige Ort, an dem ich mich wohl fühle.
8. “Die Leute wissen nicht, dass mein Vater mich im Alter von 25 bis 33 Jahren wegen der chronischen Müdigkeit des Gehirnnebels viel vorantrieb. “
9. Finden Sie bei der Arbeit einen ruhigen Raum, um die Augen zu schließen und sich mitten am Tag auszuruhen. Manchmal, wenn ich nur ein paar Augenblicke von den Leuten entfernt bin, kann ich gerade genug aufladen, um mich durchzusetzen.
10. “Die Übung. Es scheint nicht intuitiv zu sein, aber wenn ich es nicht tue, werden meine Symptome schlimmer. Also streckst du dich durch den Schmerz und drückst einfach den richtigen Betrag. “
11. “Curling unter einem Berg von Decken. Das Gewicht tröstet mich und lässt mich die Erde fühlen. Es stoppt auch die Krämpfe, die meinen Körper schütteln. “
12. “Leute beglückwünschen mich oft, wenn ich eines meiner breiten Stirnbänder trage. Manchmal lasse ich sie im Geheimen und sage: “Vielen Dank! Ich bin zu müde, um meine Haare zu waschen, damit ich sie bedecke. “
13. “Trage immer bequeme Kleidung, nicht zu einer bestimmten Zeit einschränkend, ich kann etwas feststellen, wenn es zu schlecht ist. “
14. “Ich habe Myasthenie und kann das Kauen und Schlucken schwierig oder unmöglich machen. Abends, wenn ich müde bin, kann ich mein Abendessen nicht oft beenden. Kellnerinnen bestehen darauf, immer wieder zu fragen, warum ich nicht fertig bin. Es ist eigentlich sehr aufdringlich. Ich muss nicht mit Ja oder Nein zu “Kann ich Ihren Teller nehmen” ohne Erklärung antworten! “
15. “Ich verbringe viel Zeit damit, Schritte zu zählen. Zum Beispiel weiß ich im Kino genau, wie weit die Badezimmer und Verkaufsstellen sind. Ich werde nicht der erste sein, der ausgeht, aber ich wette, ich werde es tun! “
16. “Halten Sie meine Haare kurz. Er hat keine Übung mehr. Weniger Haare zum Handhaben, Bürsten und Waschen sparen wertvolle Energie.
17. ” Ignorieren Sie Texte oder Telefonanrufe wegen schwerer kognitiver Schwierigkeiten und / oder zu müde zum Tippen oder Sprechen. “
18. “Ich esse mikrowellengeeignetes Essen, so dass ich anstelle von halb gegartem Essen überall essen kann. Ich verbrenne das Essen, um es auf dem Herd zu vergessen, oder bin versehentlich auf den Boden gefallen.
19. “Es ist manchmal schwierig, Freunden und Kollegen zu erklären, warum ich zwei Haltestellen mit dem Bus habe anstatt zu Fuß oder mit dem Taxi zu fahren, wenn ich die U-Bahn nehmen könnte (all diese Treppen!).”
20. “Ich war immer besorgt, lade sie zu Partys in der ganzen Stadt ein und biete sie jedem” Unfall auf der Couch an. Ich gehe oft und trinke einfach nicht. Nicht, weil ich nicht “feiern” wollte, sondern weil ich wusste, dass ich nicht auf einer Couch schlafen würde, weil ich Schlafstörungen habe und weil selbst ein Drink mich schrecklich fühlen würde. Hatte immer “kein Spiel”, “Hör auf zu ziehen”, “Nur ein Schuss” – Nein. Eine Nacht wäre gleich zwei Tagen runter “.
21. “Drehen meiner Hände und Beine, die sich winden oder hin und her bewegen. Ich bin wie eine Lotion auf meinen Händen die ganze Zeit, aber ich lasse etwas Schmerz durch meine eigene Körperwärme. “
22. “Ich muss noch ein Auto auf den Markt bringen, auch wenn ich einige Dinge bekomme – ich brauche Unterstützung oder am Ende der Reise werde ich kaum zu meinem Auto kommen können – Das Schlimmste ist nur online gegen Bargeld! Dies kann einen “guten” Tag wirklich ruinieren.
23. “Ich verlasse mein Haus am Montag nicht. Am Wochenende übertreibe ich oft mit Familie und Freunden. Ich brauche also einen Erholungstag – ich öffne die Jalousien nicht, ich beantworte die Tür nicht, ich ziehe die Telefone aus / stelle sie ab und bleibe im Bett, bis ich aufstehe, um zu Abend zu essen .
Welche Dinge erkennen Sie nicht, dass Sie aufgrund Ihrer chronischen Müdigkeit etwas tun? Teilen Sie in den Kommentaren unten.
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