Kroniskt trötthetssyndrom (CFS) och fibromyalgi (FMS) är försvagande och dåligt förstod kroniska sjukdomar som kan slå människor av båda könen och i alla åldrar. Par, vänner och släktingar till personer med CFS eller FMS kan känna sig förvirrade och hjälplösa, utan att veta vad man ska säga eller hur man kan erbjuda hjälp.
Det är väldigt svårt att observera obehagligt smärtan och de begränsningar som dessa sjukdomar orsakar, detta lägger till humörsvängningar, sömnbrist, irritabilitet som utlöser kronisk smärta och brist på hälsosam vila, omvandlar det dagliga livet för sjuka människor och familjemedlemmar i en konstant kamp för att upprätthålla balans och upprätthålla familjeenheten.
Inte alla kan klara av denna situation och tills de når acceptans finns det en lång väg där psykologiskt stöd är nödvändigt och ta hänsyn till den här serien av nycklar som är mycket viktiga:
Sätt dig själv i din familj och försök att förstå det
De flesta vet väldigt lite om de vet något om CFS och FMS. Båda sjukdomarna innebär mycket mer än bara “lite trötthet” eller “några värk eller smärta”. Om du har en vän eller älskad med CFS eller FMS, borde du lära dig så mycket som möjligt om dessa sjukdomar. Ju mer du vet om din älskade, desto mer kommer du att kunna stödja den.
CHRONIC FATIGINE SYNDROME (CFS)
Kroniskt trötthetssyndrom (CFS) är en kronisk och försvagande sjukdom som påverkar hjärnan och flera delar av kroppen. Detta orsakar extrem trötthet som inte minskar vilar i sängen och förvärras ofta med fysisk eller mental aktivitet. Symtomen varar i minst sex månader och är allvarliga för att skada eller störa dagliga aktiviteter. Symtomen varierar från person till person och kan innehålla:
· Kronisk trötthet som inte minskar vilande i sängen och ofta förvärras med fysisk eller mental aktivitet
· Svaghet i allmänhet
· Muskelsmärta
· Smärta utan inflammation eller rodnad
· Huvudvärk
· Problem med korttidsminnet eller koncentrationen
· Glömska eller förvirring
· Irritabilitet, ångest, humörsvängningar eller depression
· Lågnivå feber, heta blinkar eller nattsvettar
· Ont i halsen
· Känsliga lymfkörtlar
· Problem med att sova eller inte känna sig vilad efter att ha sovit
· Förlängd trötthet som varar 24 timmar eller mer efter träning
· Känslighet i ögonen för ljus
Allergier
· Yrsel
· Bröstsmärta eller andfåddhet
· Illamående
FIBROMIALGY (FMS)
Fibromyalgi är en kronisk sjukdom som orsakar utbredd smärta och styvhet i muskler, senor och ledband, tillsammans med icke-tröstande sömn och trötthet. Symtomen varierar från person till person och kan innehålla:
· Trötthet eller generaliserad trötthet
· Minskning av fysisk resistans
· Allmänna värk och smärta i muskler, senor och ligament
· Muskelstyvhet eller spasmer
· Smärta i specifika delar av kroppen, särskilt:
eller nacke
eller skuldror
eller bröst
eller bakåt (övre och nedre)
o höfter och lår
· Sömnlöshet eller sömnbrist
· Feber av domningar eller inflammation (även om inflammation inte är närvarande)
· Kronisk huvudvärk, inklusive migrän
· Morgonstyvhet, det är värre när det uppstår för första gången
Förhindra dem inte, gör dem inte värre
Vissa människor tror att individer med CFS eller FMS är lata, överdriver deras symtom eller lider av en psykisk sjukdom. Dessa människor kan felaktigt tro att deras älskade behöver bara skjutas lite hårdare. Människor med CFS eller FMS känner ofta ogiltiga när de hör:
– “Jag ser bra ut” (underliggande ogiltiggörande meddelande: “Du ser inte sjuk ut, så du måste överdriva eller låtsas”)
– “Åh, jag har haft symtom på så sätt.” “Jag blir trött på samma sätt också” (underliggande ogiltigt meddelande: “Så vad är problemet? Alla blir trött, vila lite”)
– “Har du försökt … (en föreslagen behandling)?” (Underliggande, ogiltigförklarande meddelande: “Om du inte tar denna åtgärd eller gör något för att hjälpa dig själv är det ditt fel att du fortfarande är sjuk”)
– “Är du fortfarande sjuk? (underliggande, ogiltigt meddelande: “Vad är fel med dig? Det är ditt fel att du fortfarande är sjuk”).
Erkänna smärtan hos din familjemedlem eller vän
Det faktum att du förnekar sjukdomen gör det inte försvinner långt ifrån det.
Människor med CFS eller FMS står ofta inför många utmaningar, bland annat:
· Får inte tas allvarligt av familjemedlemmar, vänner, chefer och till och med deras läkare och andra vårdpersonal
· Osäkerheten i din sjukdom
· Minska förmågan att delta i tidigare nivåer av professionell, social, pedagogisk och personlig verksamhet
· Beroende och känsla av isolering
Många använder benägenhet för att klara av en kärleks kronisk sjukdom. I stället för att lyssna, tro och visa medkänsla för vad personen går igenom, diskuterar de fakta och minimerar svårighetsgraden av situationen.
När du fullt ut känner igen din älskade situation låter du dem veta att du bryr dig, älskar och stöder dem. Följande tips kan hjälpa till:
-Känn igen svårigheten: “Jag kan inte föreställa mig hur svårt alla dessa förändringar borde vara för dig”
-Känn igen förluster, sorg och ilska: “Jag känner att du måste sluta jobbet.” “Det måste vara hemskt att du inte har styrka att fortsätta din utbildning”
– Fråga och lyssna med medkänsla: När du frågar din älskade hur han känner, kan de vara trötta, trötta, i smärta eller deprimerade. Om du bara vill höra att din älskade känns bra, sluta fråga honom hur han känner. Annars kan de känna dina förväntningar, besvikelse, ointressen eller oförmåga att förstå. Istället kan du fråga, “Hur går det idag?” Eller “Hur går det?”
Var förståelse och medkänsla
Kroniska sjukdomar presenterar många utmaningar i relationerna i en tid då komfort och socialt stöd är av största vikt. Här är några sätt du kan hjälpa till med:
· Var tålamod Kom ihåg att din älskade har behövt göra många justeringar och gör det bästa han eller hon kan.
· Ge ofta komfort och kärlek och stöd.
· Erbjuder praktisk hjälp som att springa ärenden, hjälpa till med hushållsarbeten och shopping.
· Ta din älskade till medicinska möten. Visa intresse för din omsorg och ge känslomässigt stöd.
· Hitta sätt att spendera tid tillsammans med lågintensiva aktiviteter som att titta på en film eller video, äta något, gå på fältet, spela ett spel, sitta i parken eller ge en massage.
· Känn inte att du måste “fixa” problem eller ge rekommendationer. Många gånger är det bara att bara vara där och visa medkänsla.
· Express uppskattning för vad din älskade kan ge dig, oavsett dina gränser.
· Fråga hur du kan hjälpa din älskade.
· Express beundran för den styrka och mod du uppskattar i din älskade när du kommer fram emot sjukdomsutmaningarna.
· Din älskade kan ha förändringar i hans humör på grund av stress och utmaningarna att lida av en kronisk sjukdom. Ta inte emotionella reaktioner som personliga.
· Försök att vara känslig för din älskade känslor. Lyssna och lär dig att vara uppfattande.
· Håll kontakten med din älskade. Även om han inte är så aktiv och involverad i gemensamma intressen eller möten som han en gång var, var noga med att bjuda in honom ändå.
Acceptera och möta ändringarna
CFS i synnerhet är en mycket oförutsägbar sjukdom. Symtomen kan variera, så din älskade kanske inte kan förutsäga hur han kommer att känna timmar eller till och med minuter efter en händelse. Försök att förstå med detta och vänta på följande situationer:
· Ibland tar det längre än vanligt att göra vissa saker.
· Det blir svårt för honom att göra definitiva planer.
· Du kanske inte har energi att spendera tid med dig, ibland.
· Du kanske inte kommer ihåg vissa saker (CFS kan orsaka kognitiva problem och “hjärnfog”).
· Kan ha oförutsägbara känslomässiga höga och låga
Ta hand om dig själv för att ge omsorg och stöd
CFS och FMS är svåra sjukdomar, inte bara för dem som lider av dem, men för dem som bryr sig om dem. Det är normalt att känna sig besviken, otålig, skyldig, frustrerad, hjälplös och lurad. Det är viktigt att du tar hand om dig själv så att du kan ge stöd. Det innebär att äta på rätt sätt, träna regelbundet, kontrollera din stressnivå och prata öppet om dina känslor med en familjemedlem, en vän eller en professionell rådgivare. Prata med din älskade om hur sjukdomen påverkar ditt förhållande. Fråga hur de kan hjälpa varandra. Tänk på att stöd från familj och vänner är avgörande för välbefinnandet hos personer med CFS och FMS.
Du känner dina älskade, du vet hur de är, hur svårt och aktivt de har varit, låt dem inte behandla dig som en massa lata människor, du känner dem bättre än någon annan. Låt inte någon hälsovårdare få dig att känna sig värre än du de känner redan.
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