Chronisch vermoeidheidssyndroom (CFS) en fibromyalgie (FMS) zijn slopende en slecht begrepen chronische ziekten die mensen van beide geslachten en van alle leeftijden kunnen treffen. Paren, vrienden en familieleden van mensen met CVS of FMS kunnen zich verward en hulpeloos voelen, niet wetend wat ze moeten zeggen of hoe ze hulp kunnen bieden.
Het is heel moeilijk om onbewogen de pijn en de beperkingen die deze ziekten veroorzaken te observeren, dit heeft bijgedragen aan de stemmingswisselingen, het gebrek aan slaap, de prikkelbaarheid die de chronische pijn en het gebrek aan gezonde rust veroorzaakt, het dagelijks leven van zieke mensen en familieleden in een constante strijd om het evenwicht te bewaren en de eenheid van het gezin te bewaren.
Niet iedereen is in staat om met deze situatie om te gaan en tot acceptatie is er een lange weg waar psychologische ondersteuning nodig is en rekening houden met deze reeks sleutels die erg belangrijk zijn:

Zet jezelf in de plaats van je familie en probeer het te begrijpen
De meeste mensen weten heel weinig, als ze iets weten, over CVS en FMS. Beide ziekten omvatten veel meer dan alleen “een beetje vermoeidheid” of “een paar pijntjes of kwalen”. Als je een vriend of geliefde hebt met CVS of FMS, moet je zoveel mogelijk over deze ziekten leren. Hoe meer je weet over de ziekte van je geliefde, hoe meer je in staat zult zijn om het te ondersteunen.
CHRONIC FATIGINE SYNDROME (CFS)
Chronisch vermoeidheidssyndroom (CVS) is een chronische en slopende aandoening die de hersenen en meerdere delen van het lichaam beïnvloedt. Dit veroorzaakt extreme vermoeidheid die niet bijdraagt aan het rusten in bed en vaak verergert met fysieke of mentale activiteit. De symptomen duren minimaal zes maanden en zijn ernstig genoeg om de dagelijkse activiteiten te beschadigen of te verstoren. Symptomen variëren van persoon tot persoon en kunnen zijn:
· Chronische vermoeidheid die niet bijdraagt aan het rusten in bed en vaak verergert door fysieke of mentale activiteit
· Zwakte in het algemeen
· Spierpijn
· Gewrichtspijn zonder ontsteking of roodheid
· Hoofdpijn
· Problemen met kortetermijngeheugen of concentratie
· Vergeetachtigheid of verwarring
· Prikkelbaarheid, angstgevoelens, stemmingswisselingen of depressie
· Koorts op laag niveau, opvliegers of nachtelijk zweten
· Zere keel
· Gevoelige lymfeklieren
· Problemen met slapen of zich niet uitgerust voelen na het slapen
· Langdurige vermoeidheid die 24 uur of langer na de training aanhoudt
· Gevoeligheid in de ogen voor licht
· Allergieën
· Duizeligheid
· Pijn op de borst of kortademigheid
· Misselijkheid
FIBROMIALGIE (FMS)
Fibromyalgie is een chronische aandoening die wijdverspreide pijn en stijfheid veroorzaakt in de spieren, pezen en ligamenten, samen met niet-geruststellende slaap en vermoeidheid. Symptomen variëren van persoon tot persoon en kunnen zijn:
· Vermoeidheid of algemene vermoeidheid
· Vermindering van fysieke weerstand
· Gegeneraliseerde pijnen en pijnen van spieren, pezen en ligamenten
· Spierstijfheid of spasmen
· Pijn in specifieke delen van het lichaam, vooral:
of nek
of schouder
of borst
of Terug (bovenste en onderste)
o Heupen en dijen
· Slapeloosheid of gebrek aan slaap
· Gevoel van gevoelloosheid of ontsteking (zelfs als er geen ontsteking is)
· Chronische hoofdpijn, inclusief migraine
· Ochtendstijfheid, het is erger wanneer het voor de eerste keer ontstaat
Maak ze niet ongeldig, laat ze niet slechter voelen
Sommige mensen denken dat mensen met CVS of FMS lui zijn, hun symptomen overdrijven of lijden aan een psychiatrische ziekte. Deze mensen kunnen ten onrechte geloven dat hun geliefde gewoon een beetje harder geduwd moet worden. Mensen met CVS of FMS voelen zich vaak ongeldig wanneer ze horen:
– “Ik zie er goed uit” (onderliggende ongeldige boodschap: “Je ziet er niet ziek uit, dus je moet overdrijven of doen alsof”)
– “Oh, ik heb dergelijke symptomen gehad.” “Ik word ook moe op dezelfde manier” (onderliggende ongeldige boodschap: “Dus wat is het probleem? Iedereen wordt moe, rust een beetje”)
– “Heb je geprobeerd … (een voorgestelde behandeling)?” (Onderliggende ongeldigmelding: “Als je deze remedie niet neemt of iets doet om jezelf te helpen, is het jouw schuld dat je nog steeds ziek bent”)
– “Ben je nog steeds ziek? (Onderliggende ongeldigmelding: “Wat is er mis met jou? Het is jouw fout dat je nog steeds ziek bent”).
Herken de pijn van je familielid of vriend
Het feit dat je de ziekte ontkent, maakt het niet ver weg.
Mensen met CVS of FMS worden vaak geconfronteerd met vele uitdagingen, waaronder:
· Niet serieus worden genomen door familieleden, vrienden, bazen en zelfs hun artsen en andere gezondheidswerkers
· De onzekerheid van uw ziekte
· Vermindering van het vermogen om deel te nemen aan eerdere niveaus van professionele, sociale, educatieve en persoonlijke activiteiten
· Afhankelijkheid en gevoel van isolatie
Veel mensen gebruiken ontkenning om het hoofd te bieden aan een chronische ziekte van een geliefde. In plaats van te luisteren, te geloven en compassie te tonen voor wat de persoon doormaakt, bespreken ze de feiten en minimaliseren ze de ernst van de situatie.
Wanneer je de situatie van je geliefde volledig erkent, laat je hem weten dat je echt om hem geeft, liefde geeft en steunt. De volgende tips kunnen helpen:
-De moeilijkheid herkennen: “Ik kan me niet voorstellen hoe moeilijk al deze veranderingen voor u zouden moeten zijn”
-Herken verlies, verdriet en woede: “Ik heb het gevoel dat je je baan moet opgeven.” “Het moet afschuwelijk zijn dat je niet de kracht hebt om je opleiding voort te zetten”
– Vraag en luister met mededogen: wanneer u uw geliefde vraagt hoe hij zich voelt, kunnen zij zich ziek, moe, pijnig of depressief voelen. Als je gewoon wilt horen dat je geliefde zich goed voelt, stop dan met hem te vragen hoe hij zich voelt. Anders kunnen ze uw verwachtingen, teleurstelling, desinteresse of onvermogen om te begrijpen voelen. In plaats daarvan kunt u vragen: “Hoe gaat het met u vandaag?” Of “Hoe gaat het?”
Wees begripvol en medelevend
Chronische ziekten vormen veel uitdagingen in relaties in een tijd waarin comfort en sociale steun van het grootste belang zijn. Hier zijn enkele manieren om te helpen:
· Wees geduldig Vergeet niet dat je geliefde veel aanpassingen heeft moeten doen en het beste doet wat hij of zij kan.
· Zorg voor veel comfort van liefde en ondersteuning.
· Bied praktische hulp, zoals boodschappen doen, helpen met huishoudelijke klusjes en winkelen.
· Neem je geliefde mee naar medische afspraken. Toon interesse in uw zorg en zorg voor emotionele steun.
· Zoek manieren om samen tijd te besteden aan activiteiten met een lage intensiteit, zoals het bekijken van een film of video, iets eten, naar het veld gaan, een spel spelen, in het park zitten of een massage geven.
· Voel niet dat je problemen moet “oplossen” of aanbevelingen moet doen. Vaak is alleen al het feit dat je er bent en mededogen toont voldoende.
· Geef blijk van waardering voor alles wat uw geliefde u kan geven, ongeacht uw limieten.
· Vraag hoe je je geliefde kunt helpen.
· Geef blijk van bewondering voor de kracht en moed die u waardeert in uw geliefde als u vooruit komt met de uitdagingen van de ziekte.
· Je geliefde kan veranderingen in zijn humeur hebben door stress en de uitdagingen van het lijden aan een chronische ziekte. Neem geen emotionele reacties als persoonlijk.
· Probeer gevoelig te zijn voor de gevoelens van je geliefde. Luister en leer waarnemend te zijn.
· Houd contact met je geliefde. Zelfs als hij niet zo actief is en betrokken is bij wederzijdse belangen of vergaderingen zoals hij eens was, moet je hem toch uitnodigen.
Accepteer en onderga de veranderingen
Vooral CVS is een zeer onvoorspelbare ziekte. De symptomen kunnen verschillen, dus uw geliefde kan mogelijk niet voorspellen hoe hij zich uren of zelfs minuten na een gebeurtenis zal voelen. Probeer hiermee begrip te hebben en wacht op de volgende situaties:
· Soms duurt het langer dan normaal om bepaalde dingen te doen.
· Het zal moeilijk voor hem zijn om definitieve plannen te maken.
· Je hebt misschien niet de energie om tijd met je door te brengen.
· U bent bepaalde dingen misschien niet meer bekend (CVS kan cognitieve problemen veroorzaken en “hersenspetters”)
· Kan onvoorspelbare emotionele hoogte- en dieptepunten hebben.
Pas goed op jezelf om zorg en ondersteuning te bieden
CVS en FMS zijn moeilijke ziekten, niet alleen voor hen die eraan lijden, maar ook voor degenen die voor hen zorgen. Het is normaal om teleurgesteld, ongeduldig, schuldig, gefrustreerd, hulpeloos en bedrogen te zijn. Het is belangrijk dat u goed voor uzelf zorgt, zodat u ondersteuning kunt bieden. Dit betekent goed eten, regelmatig sporten, je stressniveau controleren en openlijk over je gevoelens praten met een familielid, een vriend of een professionele counselor. Praat met je geliefde over hoe de ziekte je relatie beïnvloedt. Vraag hoe ze elkaar kunnen helpen. Houd er rekening mee dat steun van familie en vrienden essentieel is voor het welzijn van mensen met CVS en FMS.
Je kent je geliefden, je weet hoe ze zijn, hoe hard en actief ze zijn geweest, sta niet toe dat ze je behandelen als een stel luie mensen, je kent ze beter dan wie ook, laat geen enkele gezondheidswerker je slechter maken dan jij ze voelen al.
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