Wanneer je ziek bent van fibromyalgie, lijkt het alsof een deel van je vertrekt om nooit meer terug te komen. Onthoud hoe je eerder was en dat je soms in een put valt die vrij moeilijk te verlaten is. Het kunnen ziektes zijn die duidelijk zijn in de ogen van anderen, of zoals in het geval van Fibromyalgie, je interieur misschien vernietigt beetje bij beetje en dat is niet waarneembaar voor het blote oog, en neemt dit mee naar een leegte waarin onbegrip en uw eigen beperkingen u dag in dag uit overnemen. Je meenemen naar een toestand van totale handicap.
Deze mei was de internationale dag van fibromyalgie, het is een chronische ziekte die voornamelijk rusteloze slaap, extreme vermoeidheid en diffuse musculoskeletale pijn veroorzaakt. Hoewel het echt, fibromyalgie heeft meer dan honderd symptomen.
Tegenwoordig treft het 5% van de bevolking, vooral vrouwen.
Het is nog niet precies bekend wat het voortbrengt, noch is er een remedie; Wat wel duidelijk is, is het niveau van invaliditeit dat optreedt in de levens van de getroffenen, iets dat helaas in de huidige tijd niet in aanmerking lijkt te worden genomen.
Activiteiten zoals het opmaken van het bed zijn het meest pijnlijk, zo nodig als iets leuks, dansen of gewoon lachen, leidt tot extreme vermoeidheid die leidt tot tachycardie en kortademigheid. Spelen met je kinderen of achter ze aan rennen wordt onmogelijk.
Je leven verandert volledig, je stopt met zijn wie je was om iemand te worden die niet in staat is om een normaal leven te leiden.
Het gebrek aan rustgevende slaap heeft een negatieve invloed op je geest, met hiaten, gebrek aan reflexen, helder denken en zelfs gebrek aan coördinatie. Het is aangetoond dat fibromyalgiepatiënten geen lineaire REM-fase handhaven terwijl ze slapen, maar dat er veranderde pieken zijn waardoor ze niet in staat zijn om een diepe slaap te hebben. Het is alsof je niet geslapen hebt.
De uitdrukking ” het doet alles pijn ” wordt dagelijks herhaald in het leven van de patiënt met fibromyalgie.
Het gevecht begint wanneer je elke ochtend uit bed komt, met extreme vermoeidheid , rigiditeit neemt je lichaam over, je eerste minuut van de dag is echt vermoeiend. Als je het eenmaal hebt overwonnen, is het mogelijk dat de energie maar een paar uur duurt en daarna ben je weer uitgeput, alsof je een intensieve dag met een bewaker hebt afgesloten.
De pijngrens is zo laag dat een eenvoudige streling of knuffel je huid laat verbranden, waardoor fysiek contact bijzonder gecompliceerd wordt.
Alles doet pijn , soms zelfs je nagels of haar. De pijnen lijken alleen te verminderen in rust, maar je kunt het je niet veroorloven om de hele dag in bed te blijven, dus je verkiest ertegen te vechten en een normaal leven te leiden, hoewel dit een negatieve invloed heeft op je gezondheid en nieuwe uitbraken veroorzaakt door je grote vraag .
Je voelt je moe, je voelt je pijnlijk, hulpeloos, nutteloos.
Dit alles leidt tot een diepe depressie waarvan antidepressiva je niet helpen, de enige manier om het te overwinnen zou zijn om er niet meer aan te denken, maar helaas is het onmogelijk, je moet werken om te eten, om je huis te betalen en om te onderhouden. uw kinderen, en elke inspanning, hoe minimaal ook, herinnert u aan uw beperkingen.
Mensen begrijpen je niet, je hebt een onzichtbare ziekte, je kunt het niet zien, maar je draagt het naar binnen. En het ergste is niet het gebrek aan begrip, het ergste is dat ze zich afvragen wat je voelt. Na een paar jaar als arts te hebben doorgebracht tot je uiteindelijk de diagnose fibromyalgie krijgt , moet je ze confronteren om niet te geloven, om vaag te worden genoemd, om te horen dat je het slachtoffer bent; Niet alleen helpen ze je niet, maar ze laten je dieper in de modder zakken.
De medicatie helpt niet veel, ze slagen er alleen maar meer in om je te verbazen, en dat als je geluk hebt, je geen last hebt van de bijwerkingen. Ze raden fysieke oefening aan, binnen jouw beperkingen, natuurlijk. Je kunt misschien vijf minuten stretchen en dan twee dagen niet van de bank af komen.
Je kunt niet werken, of zorgen voor je huis of je familie. Maar je kunt ook geen acceptabele kwaliteit van leven hebben, want hoewel fibromyalgie een chronische ziekte is en een handicap veroorzaakt , wordt het niet echt herkend bij het aanvragen van een handicap. Ja, het is, het is een echte ziekte, maar blijkbaar is dat voor sommigen niet, iets dat enigszins vernederend is.
Weinig mensen zijn erin geslaagd om gehoord te worden, maar niet voordat ze gedwongen werden om hun zaak voor te leggen aan een rechter, al hun spaargeld uit te putten in advocaten en forensisch onderzoek en vervolgens een minimumpensioen te krijgen. Maar als fibromyalgie je beïnvloedt als je jong bent en je leven afsnijdt, heb je niets te doen, omdat je niet genoeg hebt betaald.
En het maakt niet uit of dit alles je bestaan ingewikkeld maakt, als afgezien van alles wat eerder is genoemd, de kansen op het bezitten van je eigen leven drastisch worden verminderd.
Veel jonge mensen zien iets simpels als het vormen van een familie onmogelijk, niet alleen vanwege angst voor hun fysieke problemen, maar omdat persoonlijke of familierelaties meestal niet tot wasdom komen. Niet iedereen accepteert het, laat staan om te leren leven met een ziek persoon.
De mislukkingen van een stel, werk, familie … of je gewoon voelen dat je faalt als een persoon omdat je niet kunt doen wat het lichaam vraagt of wat je hart je stuurt, niet alleen depressies veroorzaken, maar dit alles leidt tot vernietiging en veel mensen hebben het gevoel besloot om zijn lijden te beëindigen.
Deze mensen verdienen te worden behandeld met dezelfde rechten als iedereen, want ze zijn mensen, en hebben slechts dus een recht op een waardig leven, het recht hebben om te lachen, te genieten van het leven en familie, om te worden begrepen en aanvaard, om zich gewaardeerd en gerespecteerd te voelen. Om steun te voelen van artsen en openbare instellingen. Ze hebben het recht om zichzelf te voeden en te leven onder een dak dat ze zich kunnen veroorloven.
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