Voor een buitenstaander misschien dingen zoals het nemen van de lift in plaats van een trap of het draaien van de uitnodigingen van de eruit zien als een weerspiegeling van je persoonlijkheid. Maar om een persoon met chronische vermoeidheid, dit kunnen omgaan methoden die essentieel zijn voor het krijgen door middel van de dag zijn.
We vroegen onze chronische ziekte community op Facebook te delen wat dingen die ze doen die anderen misschien niet realiseren is vanwege hun chronische vermoeidheid. Hun antwoorden onthullen de aanpassingen die vaak moeten worden gemaakt in het dagelijks leven om energie te besparen, en dat gezonde mensen zich niet realiseren hoeveel van een verschil deze strategieën te maken.
Hier is wat onze gemeenschap ons vertelde:
1. “Zorg ervoor dat ik een ‘buffer dag’ in tussen een uitputtend gebeurtenis en het hervatten van het leven.”
2. “Het dragen van pyjama’s het grootste deel van de dag, als ik ga niet. Sommige dagen is het te pijnlijk om te bewegen en ik kan niet eenvoudige klusjes rond het huis. Het is pijnlijk op keer. Ik voel me slecht.”
3. “De planning van mijn douches. Ik maakte een opmerking met Kerstmis over hoe ik wou dat onze douche beneden gewerkt, omdat de meeste dagen heb ik zou willen krijgen neem een snelle douche, maar ik wil niet naar de trap te beklimmen. Vriendje Mijn man’s zus zei: ‘Wow, je bent zo lui.’ Ik zag rood op dat moment en het duurde letterlijk elke bit van wilskracht om niet uithalen naar hem.”
4. “Ik moet alles plannen op basis van wat ik nodig heb om gedaan te krijgen en hoeveel energie het gaat uit van me over te nemen.”
5. “Ik leun letterlijk de hele tijd. Op muren, op tafels, op mensen, op karren. Ik in paniek raken als er niet iets om mezelf te steunen.”
6. “Ik micromanage elk aspect en het moment van elke dag om te bepalen wat ik wel en niet kan doen en erachter te komen hoe ze dingen gedaan te krijgen. Dit is op zich is vermoeiend.”
7. “ Ik heb geen mensen uitnodigen om mijn huis. Het is altijd een puinhoop en ik voel me slecht over dat, omdat ik gewoon niet de energie om het netjes te houden. Ik draag pyjama de hele dag elke dag, tenzij ik echt nodig hebt om uit te gaan. Mijn huis is mijn toevlucht van het bedrijf van de wereld. De enige plaats waar ik voel me comfortabel.”
8. “Mensen wisten niet dat bij 25 tot 33 jaar oud mijn vader reed me hecht veel, omdat ik had hersenenmist van chronische vermoeidheid.”
9. “Het vinden van een rustige kamer aan het werk om mijn ogen te sluiten en te rusten in het midden van de dag. Soms gewoon de buurt van mensen voor een paar momenten kan ik net genoeg om door te drukken op te laden.”
10. “Exercise. Het klinkt contra-intuïtief, maar als ik niet mijn symptomen erger worden. Dus strek je door de pijn en druk op precies de juiste hoeveelheid.”
11. “Knus onder een berg dekens. Het gewicht troost me en geeft me het gevoel geaard. Het stopt de spasmen dat mijn lichaam schommelen als goed.”
12. “Mensen complimenteren me vaak wanneer ik draag een van mijn brede hoofdbanden. Soms laat ik ze in het geheim en zeggen: ‘Thanks so much! Het is omdat ik te moe om mijn haar, dus ik ben met betrekking tot het te wassen zijn geweest. ‘”
13. “Altijd het dragen van comfortabele, niet-beperkende kleren, zodat op een gegeven moment kan ik vaststellen voor een beetje als het te slecht wordt.”
14. “Ik heb myasthenia gravis en het kan kauwen en slikken moeilijk tot onmogelijk. In de avond, toen ik het meest vermoeid, ik vaak niet mijn diner af te maken. Serveersters erop blijven hameren dat meerdere keren waarom ik niet af te maken. Het is eigenlijk heel opdringerig. Ik zou alleen maar ‘ja’ te beantwoorden of nee tegen ‘Mag ik je bord,’ zonder een uitleg!”
15. “Ik besteed veel tijd te tellen stappen. Bijvoorbeeld, op de films die ik weet precies hoe ver de badkamers en uitgangen zijn. Ik ben niet van plan om de eerste buiten te zijn, maar ik wed dat ik het maken!”
16. “Het houden van mijn haar kort. Het is uit praktisch. Minder haar te beheren, borstel, en wassen bespaart kostbare energie.”
17. “ Het negeren van teksten of telefoontjes als gevolg van ernstige cognitieve problemen en / of te moe om te typen of te praten.”
18. “Ik eet microwavable eten dus ik kan eten in plaats van het verlaten van de helft gekookt eten allemaal over. Ik brand voedsel van het vergeten op het fornuis of belanden laten vallen op de grond door een ongeval.”
19. “Het is soms moeilijk uit te leggen aan vrienden en collega’s de reden waarom ik met de bus twee haltes in plaats van gewoon wandelen, of neem een taxi toen ik de metro zou kunnen nemen (al die trappen!)”
20. “Ik heb altijd bezorgd over de uitnodigingen voor partijen in de stad en het aanbod om gewoon ‘crash op de bank.’ Ik zou meestal gaan en gewoon niet drinken. Niet omdat ik niet wilde ‘party’, maar omdat ik wist dat ik niet slapen op een bank, want ik heb zo’n harde tijd om te slapen en omdat zelfs een drankje zou ik me verschrikkelijk. Ik heb altijd ‘party fout,’ ‘Wees niet een drag,’ ‘Just one shot’ – Nope. Een avondje uit zou komen overeen met ongeveer twee dagen naar beneden.”
21. “Wringing mijn handen en wiggling mijn benen of schommelen heen en weer. Ik eruit alsof ik wrijven lotion op mijn handen de hele tijd, maar echt ik ben op zoek naar een aantal van de pijn te verzachten door mijn eigen lichaamswarmte.”
22. “Ik heb altijd al een wagen op de markt zelfs als ik ben alleen het krijgen van een paar dingen te krijgen – ik heb het nodig om steun of aan het einde van de reis ik nauwelijks in staat om mijn auto te halen – de ergste onderdeel is gewoon in de rij staan om uitbetaald te worden! Dat kan eigenlijk een ‘goede’ dag verpesten.”
23. “Ik wil niet mijn huis te verlaten op maandag. Ik overdrijf het niet vaak in het weekend met familie en vrienden. Dus ik moet een dag voor het herstel – ik niet de blinds te openen, weet ik niet de deur open, ik de stekker / uitschakelen van de telefoon, en in bed blijven rusten totdat ik opstaan om eten klaar te maken “.
Welke dingen doe je dat mensen niet beseffen dat je aan het doen bent vanwege je chronische vermoeidheid? Aandeel in de reacties hieronder.
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