Fibromyalgie | “Ik glimlach op de foto’s, maar ik ga geen dag zonder pijn.”

Georgina Harvey is 28 jaar oud en bracht geen enkele dag door zonder pijn bij fibromyalgie. Hier is je getuigenis.

Wanneer was de laatste keer dat je pijn had?

Hoe dan ook, hoofdpijn, schoudercontractuur, nierstenen of een slag naar de teen, de kans is groot dat je genezen bent.

Maar stel je voor hoe moeilijk het is om elke dag op te staan, wetende dat dit ongemak niet zal verdwijnen.

Dit is het leven van mensen met chronische pijn. Velen zijn gefrustreerd omdat hun symptomen onzichtbaar lijken voor anderen en vaak mensen deze niet begrijpen en onderschatten. September is de maand van de internationale bekendheid voor pijn en om beter te begrijpen wat het betekent om voortdurend te leven met deze ziekte, BBC Three uitgenodigd Georgina Harvey, een Engels 28 jaar met fibromyalgie, het delen van zijn getuigenis.

“Het is alsof alle zenuwuiteinden zijn verbrand.”

“Op een ochtend in juli 2016 werd ik normaal wakker, maar toen ik probeerde te bewegen, voelde ik een zeer intense pijn in mijn lichaam.

Het is alsof alle zenuwuiteinden zijn verbrand en ik zou kunnen gillen.

De glimlach op de foto’s toont niet de pijn die Georgina Harvey vier jaar lang elke dag heeft geleden.

Mijn moeder kwam naar mijn kamer rennen, nam me mee naar de zijkant en bleef bij me tot het gevoel verdween. We wisten dat we een uitbraak van fibromyalgie hadden, maar het is de ergste die ik heb gekend sinds de diagnose twee jaar geleden.

Mijn probleem begon met de noodzaak mijn nek uit te rekken toen ik 19 was, kort na mijn herstel.

Daarna ontwikkelde ze een indringend gevoel van tintelingen in de schouders en een diepe pijn in de rug.

Ik dacht dat het kwam door een slechte houding, maar op 21-jarige leeftijd was de pijn bijna constant.

Ik deed röntgenfoto’s, bloedonderzoek en MRI, maar er werd niets gezien.

Ze gaven me krachtige pijnstillers en de dokter verhoogde de dosis of het type als de pijn ondraaglijk werd.

Ik beschreef het ongemak als de slechtste maagpijn die je je kunt voorstellen, maar dan op de rug, gecombineerd met een intense druk op de borst, alsof het mijn ribben bespatte.

Toen morfine het enige alternatief was dat ik moest behandelen, gaven ze me ziekteverlof en verwees ik naar een reumatoloog, wat leidde tot mijn diagnose.

“De impact was fundamenteel: werk, beweging, sociaal leven”, zegt Georgina.

Hij legde uit dat chronische fibromyalgiepijn werd veroorzaakt door een stoornis van het centrale zenuwstelsel, maar voegde eraan toe dat er geen specifieke behandeling of behandeling bestond, maar alleen manieren om het probleem te behandelen.

Ik had jarenlang geprobeerd om de dingen te doen die ik voorstelde: pillen, yoga, zwemmen, fysiotherapie en cognitieve gedragstherapie, maar niets kalmeerde de pijn.

Hoewel het een opluchting was om eindelijk een diagnose te kunnen stellen van wat er met me gebeurde, bleef ik er kapot van om te denken dat het iets is waar ik mee zou moeten leven.

“Dit gaat over alles”

Tegenwoordig verspreidde de pijn zich naar mijn heupen en voeten en ontwikkelde ook maagproblemen.

Dagelijkse activiteiten zoals telefoneren, een beha dragen of gewoon in een stoel zitten kan een uitbraak van pijn veroorzaken en het douchen kan uitputtend zijn.

Pijn geeft Georgina een indruk van het mentale gewicht waardoor ze niet helder kan denken.

Ik voelde me nooit uitgerust omdat fibromyalgie me verhinderde te slapen en een waas in de hersenen opwekte, een gevoel van mentaal gewicht dat me verhindert helder te denken als ik veel pijn heb.

Ik ben altijd een beetje verlegen geweest, maar nu is het nog moeilijker om een ​​gesprek te hebben. Over het algemeen denk ik dat ik een angstig persoon was, omdat ik altijd in de frontlinie ben.

De impact was alles: werk, beweging, sociaal leven. De aanbeveling die ze mij doen is “doorgaan”, maar als ik een slechte aflevering heb, kan ik niets doen, dus het is een vicieuze cirkel.

Als ik plannen maak, moet ik me afvragen of ik zal moeten staan ​​of zitten en hoe lang ik zal moeten vertrekken.

Meestal, als ik kan, heb ik moeite om verder te gaan omdat ik niet wil dat de pijn stopt of dat mijn vrienden denken dat het me spijt.

Maar vaak moet ik me verplaatsen naar een geïsoleerde plaats, meestal een badkamer, als de uitputting en pijn erg sterk zijn.

– Beheer pijn –

Sommige dingen kunnen me troosten, zoals een warmwaterkruik of een zachte deken. Sterker nog, ik ben geobsedeerd door dingen die voor welzijn zorgen of die aangenaam zijn om aan te raken, omdat mijn lichaam erg gevoelig is.

Ik hou ook van wandelen, maar ik moet het op mijn eigen tempo doen. Dit helpt me om epidemieën te voorkomen en verbetert altijd mijn humeur.

Soms helpt een fles heet water.

Vorig jaar verliet ik mijn baan in Londen bij evenementenmarketing om de 90 minuten durende rondreis te vermijden, wat een verschil maakte voor mijn welzijn.

Hoewel ik nooit een volledig pijnloze dag heb, zijn sommige gemakkelijker te beheren dan andere. Ik herinner me altijd dat er mensen zijn die veel meer lijden dan ik. Mijn familie moedigt mij ook aan. Ik woon bij mijn ouders en ze geven me veel emotionele steun.

Mijn vriend doet er ook alles aan om mij te helpen, maar ik voel me schuldig als mijn gezondheid onze relatie beïnvloedt. Onlangs gingen we na een romantisch diner naar de auto, maar het was koud op de weg en de trillingen deden me bijna vallen.

Voor mij is het belangrijk om informatie te onthullen over hoe te leven met chronische pijn, want elke keer als ik zeg dat ik fibromyalgie heb, heeft niemand gehoord van het probleem en omdat het “onzichtbaar” is, is er helaas veel stigma. Mensen onderschatten hem en verschillende bazen zeiden me dat ze het niet begrepen.

Hoe dan ook, ik begrijp het: ik maak grapjes. Ik drink niet als ik loop en ik zet smileyfoto’s op Instagram. Maar deze foto’s laten niet zien dat ik onder de sterkste pijnstillers zat die ik heb, en ook niet dat wanneer ik naar huis ga, ik begin te huilen.

Ik wil niet dat mijn toestand bepaalt wie ik ben. Ja, dat is een deel van mij, maar ik heb de vastberadenheid om hem mij niet te laten beheersen.

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