Kronisk utmattelsessyndrom (CFS) og fibromyalgi (FMS) er forringende og dårlig forstått kroniske sykdommer som kan ramme mennesker av begge kjønn og i alle aldre. Par, venner og slektninger til personer med CFS eller FMS kan føle seg forvirret og hjelpeløs, uten å vite hva de skal si eller hvordan å tilby hjelp.
Det er svært vanskelig å observere ubehagelig smerten og begrensningene som disse sykdommene oppfordrer til, dette legger til humørsvingninger, søvnmangel, irritabilitet som utløser kronisk smerte og mangel på sunn hvile, konverterer dagliglivet til syke mennesker og familiemedlemmer i en konstant kamp for å opprettholde balanse og opprettholde familiens enhet.
Ikke alle er i stand til å møte denne situasjonen, og inntil nå aksept er det en lang vei hvor psykologisk støtte er nødvendig og ta hensyn til denne rekke nøkler som er svært viktige:
Sett deg på din familie sted og prøv å forstå det
De fleste vet veldig lite om de vet noe om CFS og FMS. Begge sykdommene involverer mye mer enn bare “litt tretthet” eller “noen smerter”. Hvis du har en venn eller en kjære med CFS eller FMS, bør du lære så mye du kan om disse sykdommene. Jo mer du vet om din elskede sykdom, desto mer vil du kunne støtte den.
CHRONIC FATIGINE SYNDROME (CFS)
Kronisk utmattelsessyndrom (CFS) er en kronisk og forstyrrende lidelse som påvirker hjernen og flere deler av kroppen. Dette fører til ekstrem tretthet som ikke reduserer hvile i sengen og ofte forverres med fysisk eller mental aktivitet. Symptomene varer minst seks måneder og er alvorlige nok til å skade eller forstyrre daglig aktivitet. Symptomene varierer fra person til person, og kan omfatte:
· Kronisk tretthet som ikke reduserer hvile i sengen og ofte forverres med fysisk eller mental aktivitet
· Svakhet generelt
· Muskelsmerter
· Felles smerte uten betennelse eller rødhet
· Hodepine
· Problemer med korttidshukommelse eller konsentrasjon
· Glemsomhet eller forvirring
· Irritabilitet, angst, humørsvingninger eller depresjon
· Lavt feber, blits eller nattesvette
· Sår hals
· Sensitive lymfeknuter
· Problemer med å sove eller ikke føle seg hvile etter å ha sovet
· Langvarig tretthet som varer 24 timer eller mer etter trening
· Følsomhet i øynene for å lyse
· Allergier
· Svimmelhet
· Brystsmerter eller kortpustethet
· Kvalme
FIBROMIALGY (FMS)
Fibromyalgi er en kronisk lidelse som forårsaker utbredt smerte og stivhet i muskler, sener og ledbånd, sammen med ikke-trøstende søvn og tretthet. Symptomene varierer fra person til person, og kan omfatte:
· Tretthet eller generalisert tretthet
· Reduksjon av fysisk motstand
· Generelle smerter og smerter i muskler, sener og ledbånd
· Muskelstivhet eller spasmer
· Smerter i bestemte områder av kroppen, spesielt:
eller nakke
eller skuldre
eller bryst
eller tilbake (øvre og nedre)
o hofter og lår
· Søvnløshet eller mangel på søvn
· Følelse av nummenhet eller betennelse (selv om betennelse ikke er tilstede)
· Kronisk hodepine, inkludert migrene
· Morgenstivhet, det er verre når det oppstår for første gang
Ikke ugyldig dem, gjør dem ikke dårligere
Noen mennesker tror at personer med CFS eller FMS er dovne, overdriver deres symptomer eller lider av en psykisk sykdom. Disse menneskene kan feilaktig tro at deres elskede bare trenger å bli presset litt vanskeligere. Folk med CFS eller FMS føler seg ofte ugyldig når de hører:
– “Jeg ser bra ut” (underliggende ugyldig melding: “Du ser ikke syk ut, så du må overdrive eller late som”)
– “Åh, jeg har hatt symptomer på denne måten.” “Jeg blir sliten på samme måte også” (underliggende ugyldig melding: “Så hva er problemet? Alle blir slitne, hvil litt”)
– “Har du prøvd … (en foreslått behandling)?” (Underliggende ugyldig melding: “Hvis du ikke tar denne løsningen eller gjør noe for å hjelpe deg selv, er det din feil at du fortsatt er syk”).
– “Er du fortsatt syk? (underliggende ugyldig melding: “Hva er galt med deg? Det er din feil at du fortsatt er syk”).
Kjenne smerten til familiemedlemmet eller din venn
Det faktum at du nekter sykdommen, gjør det ikke langt unna det.
Folk med CFS eller FMS står ofte overfor mange utfordringer, blant annet:
· Ikke bli tatt alvorlig av familiemedlemmer, venner, sjefer og til og med deres leger og andre helsepersonell
· Usikkerheten i sykdommen din
· Reduser evnen til å delta i tidligere nivåer av faglige, sosiale, pedagogiske og personlige aktiviteter
· Avhengighet og følelse av isolasjon
Mange bruker benektelse til å takle en kronisk sykdom hos en elsket. I stedet for å lytte, tro og vise medfølelse for hva personen går gjennom, diskuterer de fakta og minimerer alvorlighetsgraden av situasjonen.
Når du fullt ut kjenner din kjære situasjon, lar du dem få vite at du virkelig bryr deg, elsker og støtter dem. Følgende tips kan hjelpe:
-Kjenne til vanskeligheten: “Jeg kan ikke forestille meg hvor vanskelig alle disse endringene burde være for deg”
-Kjenne igjen tap, tristhet og sinne: “Jeg føler at du må slutte jobben din.” “Det må være fryktelig at du ikke har styrken til å fortsette din utdanning”
– Spør og hør med medfølelse: Når du spør din kjære om hvordan han føler, kan de være trøtt, trøtt, i smerte eller deprimert. Hvis du bare vil høre at din kjære føler seg bra, må du slutte å spørre ham hvordan han føler. Ellers kan de føle dine forventninger, skuffelse, disinterest eller manglende evne til å forstå. I stedet kan du spørre: “Hvordan går det i dag?” Eller “Hvordan går det?”
Vær forstående og medfølende
Kroniske sykdommer presenterer mange utfordringer i forhold på en tid da komfort og sosial støtte er av største betydning. Her er noen måter du kan hjelpe:
· Vær tålmodig Husk at din kjære har måttet gjøre mange tilpasninger og gjør det beste han eller hun kan.
· Gi hyppig komfort av kjærlighet og støtte.
· Tilbyr praktisk hjelp som løpende ærend, hjelp med husarbeid og shopping.
· Ta din kjære til medisinske avtaler. Vis interesse i din omsorg og gi følelsesmessig støtte.
· Finn måter å tilbringe tid sammen med lavintensitetsaktiviteter som å se på film eller video, spise noe, gå på banen, spille et spill, sitte i parken eller gi en massasje.
· Ikke føler at du må “fikse” problemer eller gi anbefalinger. Mange ganger er det bare å være med og være medfølelse.
· Gi uttrykk for forståelse for hva din kjære kan gi deg, uavhengig av dine grenser.
· Spør hvordan du kan hjelpe din kjære.
· Gi uttrykk for beundring for styrke og mot du setter pris på i din kjære når du kommer frem med utfordringene i sykdommen.
· Din kjære kan ha endringer i humøret på grunn av stress og utfordringene som lider av en kronisk sykdom. Ikke ta følelsesmessige reaksjoner som personlige.
· Prøv å være følsom overfor dine kjære. Lytt og lær å være opptatt.
· Hold kontakten med din kjære. Selv om han ikke er så aktiv og involvert i felles interesser eller møter som han en gang var, må du invitere ham uansett.
Godta og ta imot endringene
Spesielt CFS er en svært uforutsigbar sykdom. Symptomene kan variere, slik at din kjære kanskje ikke kan forutsi hvordan han vil føle timer eller minutter etter en hendelse. Prøv å forstå dette og vent på følgende situasjoner:
· Noen ganger vil det ta lengre tid enn vanlig å gjøre visse ting.
· Det vil være vanskelig for ham å lage endelige planer.
· Du kan ikke ha energi til å tilbringe tid med deg, noen ganger.
· Du kan ikke huske visse ting (CFS kan forårsake kognitive problemer og “hjernefeil”.)
· Kan ha uforutsigbare følelsesmessige høyder og nedturer.
Ta vare på deg selv for å gi omsorg og støtte
CFS og FMS er vanskelige sykdommer, ikke bare for dem som lider dem, men for de som bryr seg om dem. Det er normalt å føle seg skuffet, utålmodig, skyldig, frustrert, hjelpeløs og lurt. Det er viktig at du tar vare på deg selv slik at du kan yte støtte. Dette betyr at du spiser riktig, trener regelmessig, kontrollerer stressnivået ditt og snakker åpent om dine følelser med et familiemedlem, en venn eller en profesjonell rådgiver. Snakk med din kjære om hvordan sykdommen påvirker forholdet ditt. Spør hvordan de kan hjelpe hverandre. Husk at støtte fra familie og venner er viktig for trivsel hos mennesker med CFS og FMS.
Du kjenner dine kjære, du vet hvordan de er, hvor hardt og aktivt de har vært, ikke la dem behandle deg som en haug med dovne mennesker, du kjenner dem bedre enn noen, ikke la noen helsepersonell få deg til å føle deg verre enn deg de føler seg allerede.
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