Hoe ik fibromyalgie beschrijf aan mensen die het nooit hebben gevoeld

Heb je ooit willen voelen hoe het is om fibromyalgie te hebben? Right? Ik ook niet. Maar ik heb de ins en outs hiervan heel goed leren kennen (zeker beter dan ik ooit heb gewild) en ik zou je genoeg van mijn ervaringen kunnen vertellen, zodat je iemand in je leven beter begrijpt die een chronische, pijnlijke ziekte kan hebben of andere gezondheidsproblemen. Dus haal diep adem en maak je klaar om iets nieuws te proberen. Een reis door mijn ogen, als je wilt.

Denk aan de laatste echt ernstige zonnebrand die je had, degene die je bewust maakt van elke centimeter van je huid? Het prikte overal, het voelde strak en heet. Sta jezelf toe het nu te voelen: stel je voor dat je een smalle gevoeligheid en een gevoel van verbijstering hebt bij elke aanraking die zich uitstrekt tot elk deel van je huid. Nu kan iedereen de naden op hun kleding voelen en zijn ze zelfs heel goed bewust waar ze hun vingers aanraken en de huidplooien op hun ellebogen en knieën. De kraag van zijn hemd is strak en de taille van zijn broek. ongemakkelijk, claustrofobisch.

Maar aanraking is niet het enige gevoel dat toeneemt. De geluiden beginnen sterker te worden dan het absoluut noodzakelijk en vaak onaangenaam lijkt. Tijdens het rijden kunnen de lichten te helder lijken en soms onverwacht schijnen. Je moet ‘s nachts veel voorzichtiger rijden: plotseling lijken de koplampen uit te steken. De geuren zijn te sterk en die die ooit aangenaam waren, of de voedingsmiddelen die heerlijk leken of gewoon onverschillig leken, zijn nu vies en, soms, volledig misplaatst, zijn gewoon misselijkmakend.

Heb je ooit griep gehad? Dat smerige seizoentype dat je zo pijnlijk doet voelen dat je, zelfs na het nemen van vier Motrin, nog steeds je hele skelet kunt voelen? Als je dat hebt is een nuttige referentie. Zo niet, verheug je en blijf je vaccineren tegen de griep! Stel je voor dat je op een dag wakker wordt met dat pijnlijke, zware gevoel, alleen dat het schrikbarend erger is dan normaal. Moeilijk voor jezelf, denk: “Wel, die griepprik werkte niet” en zuchtte, in de hoop dat het na een week of zo zou verdwijnen, zoals de vorige keer. Pas na twee weken, drie, begin je je zorgen te maken. En dan wordt het erger.

Begin met het maken van je ledematen zwaar, moe. Net als het gevoel van wandelen door het zand, vergeet je misschien enkele dagen dat je niet de energie hebt die je vroeger gebruikte en overdreef, alleen om de energieschuld twee of drie dagen in bed te betalen. Tegenwoordig, en op sommige willekeurige dagen, zonder een andere voorzienbare reden dan het wrede gevoel voor humor van het lot, kun je alleen wakker worden met de energie om op te staan, je aan te kleden en te eten.

De partner van chronische vermoeidheid en pijn is iets dat “hersennevel” wordt genoemd, en dat klinkt stom. Dat is het niet Het kan je dom en beschaamd doen voelen en proberen het te verbergen en te lachen alsof het niets is. Maar je sleutels kunnen in de vriezer terechtkomen, de melk kan in de kast gaan en je zult in een willekeurige kamer in je huis naar de muur kijken en je afvragen: “Wat zou je nu doen?” Vier keer per dag. Winkelen is een grap, ook al is het veel meer … nu grillig. Je raakt alle stoffen van de kleding aan om te zien of ze zacht genoeg zijn en je vertelt je partner: “Oooh, voel deze handdoek!” Maak je geen zorgen, ze zullen eraan wennen. Mijn man moet me eraan herinneren waar ik naar op zoek was, elke keer als hij me afleidde met de verdomde verkoopstickers of mooie handdoeken … Een doel is een gevaarlijke plaats.

Maar geloof het of niet alles, tot het laatste beetje, verbleekt in vergelijking met de pijn. Het wordt je beste vriend, je nieuwe en constante metgezel. Op sommige dagen is het draaglijk, en het maakt alles net een beetje helderder en de hoeken van je ogen een beetje strakker. Het maakt haar temperament snel, maar ze heeft een goede greep op dingen (vraag haar man niet wat hij denkt). Andere dagen, nou … die dagen houden we niet zo van denken. Sommigen van hen zullen worden besteed aan het zoeken naar afleidingen, zoals boeken en films. Je kent waarschijnlijk theaters met comfortabele stoelen, want die oncomfortabel zijn, waar je niet meer heen kunt. In de andere van deze dagen, de slechteriken, zou je kunnen doen alsof je niet bestaat.

Ik weet dat ik hier een nogal grimmige foto heb geschilderd, en een die al dan niet gelooft is overdreven. Of je het nu doet of niet, het heeft waarschijnlijk veel te maken met of je ervaring hebt met chronische pijn of met iemand die het heeft. Maar ik zal u iets anders vertellen dat u kunt geloven of niet, en dat is wat ik dankbaar ben voor mijn fibro. Hij heeft me meer over mij en het leven geleerd dan alles wat ik ooit heb meegemaakt.

Ik heb nooit geweten hoe zacht de vacht van mijn Yorkie was, en ook niet hoe charmant de geur van regen na smog zou zijn. Ik kon de muziek van de regen op het dak niet waarderen toen ik mijn ogen sloot na een lange dag. Er is een balans die pijn heeft, als ik ernaar kijk.

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