“Doe het een beetje, mevrouw.”

Fibromyalgie en winter: laten we erover praten.

Volgens weersinformatie die in mijn hoek van Centraal-Afrika aankomt, zijn de temperaturen deze week het hardst deze winter, de eerste die ik ontdekte met fibromyalgie. Het was geen sinecure, ik ben afgelopen januari gevlucht, erg bang om mijn huid te verlaten, de winter en fibromyalgie mengen zich niet.

Hier is een tekst gepost op mijn Facebook-account afgelopen november over de ijzige manifestaties bij fibromyalgie die me duwden om in januari naar het warme asiel te gaan.

Zaterdagavond de drang om eten te maken, niet die gegrilde braadstukken waaraan ik gewend ben, of die zelfgemaakte gerechten die ik een aantal maanden onderteken, maar deze keer een echte maaltijd. Een uurtje opstaan ​​in de keuken is absoluut onmogelijk, ik krijg het vervelende gevoel dat mijn ruggengraat steeds weer van mijn rug komt. Toen, op zaterdag, gewapend met moed, maakte ik de grote beslissing om te eten. Ik deed wat boter in de pan en begon de uien te hakken. Ik ging niet ver in mijn leven, mijn handen zouden me niet gehoorzamen, ze waren gevoelloos en pijnlijk, het gevoel dat ze in elk van hen gewichten van 5 pond hadden.

Dat is hoe mijn culinaire avontuur op zaterdagavond eindigde.

Zondagnacht ging ik uit eten met mijn vriend Martine die een heerlijk gerecht van het land klaarmaakte. Ik kon het stuk dat ze me geserveerd had niet afmaken, ik moest het bestek na 3 minuten plaatsen. Vanaf nu wordt het moment van de maaltijd zeer snel omgezet in marteling, de ronde reizen van de plaat naar de mond zijn vergelijkbaar met de echte Olympische wedstrijden. Telkens als ik de helft van mijn bord afwerk, ben ik zo moe als iemand die terugkomt van Mount Cameroon, ik voel de moed en kracht van een atleet aan tafel. En de gesprekken? Ik kan niet meer dan twee zinnen zeggen zonder een pauze te nemen om op te laden en ga soms 5 minuten naar bed en hervat dan het gesprek waar het stopte, hoe dan ook, als ik me dat natuurlijk herinner, want met de kou nemen de pijnen toe en ook de cognitieve problemen. Als gevolg daarvan ben ik voornamelijk westerling.

De pijn neemt toe, elke dag kruiste ik naar een nieuw niveau waarvan ik niet wist dat het de dag ervoor bestond. Vandaag kan ik niet meer zitten, ik heb stelten op mijn rug, liggend voel ik me alsof ik op open wonden lig.

Gisteravond ging ik naar de eerste hulp, mijn rug, benen en armen waren zo pijnlijk dat ik mezelf niet op mijn plaats kon houden, en mijn appartement omdraaien als een gekooide leeuwin put mij uit en benadrukt me nog meer, ik kan het niet uitstaan, liggen of liggen, en ik weet niet wat ik moet doen met mijn pijnlijke armen op mijn lichaam. Ik ben nog nooit zo blij geweest om Kaba ngondo in mijn kleedkamer te hebben, je weet dat dit soort traditionele traditionele jurken uit Kameroen je gewoon in de war bracht, want er zijn dagen dat ik moet vragen of ik een broek of een bh draag, zodat het zal niet gebeuren. Gisteren was ik overtuigd door mijn beste vriend Joviale om naar de ER te gaan. Ik belde een taxi.

Lopend 20 meter van de parkeerplaats naar het huis, dacht ik dat ik mijn zenuwen verliet!

Ik kon de simpele vragen niet beantwoorden die de verpleegster me vroeg: ‘Uw adres is American street …? Uw telefoonnummer 046 …? 3 De pijn maakte me misselijk. Het enige wat ik kon zeggen was “Fibromyalgie! Fibromyalgie “Een pijnlijke litanie. Gelukkig begreep ze de urgentie, vijf minuten later kwam een ​​verpleegster mij halen.

Verpleegster: Doe je jas uit. 
Me: Ik kan niet, help me alsjeblieft. 
De verpleegster: Maar je hebt een inspanning geleverd!

Dus deze zin is vol van oordeel dat ik weiger te horen, de reden dat ik aarzel om naar de nood te gaan terwijl ik martelaarschap krijg, die verdomde zin “doe een poging.”

Sinds het begin van deze winter woon ik thuis, mijn zeldzame uitstapjes zitten in mijn huisarts en reumatoloog, ik accepteer alleen “veilige” mensen, die mij niet zullen veroordelen, die me niet zullen vertellen “Patricia doet een poging” ..

Ik keek naar de verpleegster en wilde haar zeggen: “Ik heb iets meer dan 2 jaar in Brussel gewoond, ik ken de helft van de diensten van dit ziekenhuis waar ik twee keer ben geopereerd, ik zal je in je dienst begeleiden met je ogen dicht, zodat ik het weet! Maar nooit, zelfs op de verschrikkelijke momenten waarop de hoop mij in de steek laat, heb ik nooit een ambulance gebruikt, ik kwam altijd met een taxi, het beeld dat ik op een brancard lag als een machteloze die me heeft gedood, het blijft nog steeds kruimels van trots. Dus, beste vreemdeling, ik vraag je om me te helpen uitkleden en je vraagt ​​me om “een inspanning” te doen.
Alles ging door mijn hoofd, maar ik was niet in staat om al de woede dat mijn hart vervuld te vertellen, ik kon bedelen in een adem “Ik kan niet, alsjeblieft,” en het was ook de energie die me vraagt ​​om een ​​zin te formuleren u … Hij trok zijn jas uit, dan nam de spanning op 5 minuten kwam vervolgens terug om te vragen of het beter was … .JI gevraagd wat vijf minuten geleden sinds zijn vertrek was gebeurd. Hij vertrok zonder een woord te zeggen.
Dus kom ik tot de conclusie, misschien haastig, dat voor deze verpleegster mijn ziekte psychotisch zou zijn, naar het ziekenhuis gaan zou me “beter” maken, het is gewoon het fibromyalgiesyndroom, waarom het een drama maken, vroeg ik wrang. Ik lag daar te wachten op de dienstdoende arts, ik had het zo koud, er kwam een ​​verpleegster langs en ik vroeg of ze mijn benen met mijn jas wilde bedekken. Ze legde het op mijn borst en ging weg. Ik ging naar mijn benen en vroeg me om een ​​dergelijke inspanning … Ik was gebarsten! De tranen die ik sinds de ochtend heb vastgehouden, werden losgelaten, met grote golven op mijn gezicht.
Ik ben gewoon fibromyalgie, niet gehandicapt.
Dus dat is de impliciete boodschap elke keer dat ik naar de ER ging. Dit wil zeggen hoe ziek deze ziekte nog steeds verkeerd begrepen wordt en we dubbel ziek worden omdat we al gevangen zitten in onze pijn. Die nacht stelde ik de dokter voor dat hij mij direct een infusie van morfine zou geven, hij antwoordde dat de tradonal, die een derivaat is, zou volstaan. Ik smeekte hem en legde uit dat ik net de traditionele had onderbroken omdat inefficiënt: “Nee mevrouw Bakalack, geen morfine voor u”.
De infusie was na 3 uur voltooid. Ik herhaalde tegen de dokter dat het niet genoeg was, ik kon nu mijn handen gebruiken, maar mijn rug en benen waren nog steeds zo pijnlijk dat hij doof bleef voor mijn verzoeken. Ik belde opnieuw een taxi en ging om 2 uur ‘s morgens naar huis.
Het is acht uur geleden en ik ga terug naar de eerste hulp.

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