De strijd tegen fibromyalgie is dat elke dag iets nieuws is. Mijn leven van dag tot dag is een constante strijd op een all-terrain baan; vol gevaren, zonder idee waar ik naartoe ga of wat ik hierna ga geven. Ik zit in een oneindige omgeving van symptomen. Elk obstakel wordt berekend om risico te vermijden, maar het resultaat is nooit voorspelbaar, hoe hard je ook probeert. De variabelen doen er niet toe.
Er zijn veel symptomen van fibromyalgie, waaronder:
- Chronische spierpijn, spierspasmen of stijfheid
- ernstige chronische vermoeidheid en verminderde energie
- Slapeloosheid of een wakker gevoel, net zo moe als toen je ging slapen
- Stijfheid bij het ontwaken of na lang in een positie te hebben gewoond
- Moeite met herinneren, concentreren en uitvoeren van eenvoudige mentale taken (“fibro-mist”)
- buikpijn, opgezette buik, misselijkheid en constipatie zonder meldbaar gastro-intestinaal probleem
- Stress of chronische migraine
- Gevoeligheid voor een of meer van de volgende symptomen: geuren, geluiden, sterke lichten, medicijnen, bepaald voedsel en verkoudheid
- Angst en depressie
- Gevoelloosheid of tintelingen in het gezicht, armen, handen, benen of voeten
- Gevoel van zwelling (zonder daadwerkelijke zwelling) in handen en voeten
- De gevoeligheid van de kaak en het gelaat
- Costochondritis, ontsteking van het kraakbeen dat een rib aan het borstbeen hecht
- Blijf doorgaan. Ze worden nog beter. Zoals, allodynie, een grotere gevoeligheid voor aanraking, die pijn veroorzaakt dan dingen die normaal geen ongemak veroorzaken, zoals het dragen van kleding.
Voor mij worst ik met pijn en vermoeidheid. Eén dag, dit is niet alleen hoofdpijn of ik ben moe. Dit is het hele lichaam doet pijn alsof ik griep heb. Dit is de vermoeidheid alsof hij niet binnen 48 uur had geslapen. Dat is elke dag. Dit is mijn constante baseline. Mijn bestaand normaal is op een ziekelijke dag. Of met een kater. Dit is hoe ik leef.
Als referentie ben ik 27, 5’1 “en 120 pond. Ik zie er gezond uit.
De andere symptomen zijn echter het moeilijke gedeelte. Ze rollen als een flipperkast door mijn lichaam; voortdurend veranderende locatie en ernst, vaak in scherpe pijn, snel, zo snel dat ik nauwelijks kan ademen voordat ik verder ga. Regelmatig een duur van uren per keer; waar mijn benen het gevoel hebben dat ze gewichten van 100 pond hebben. Normaal gesproken raakt het tijdens het uitvoeren van mijn basisboodschappen me aan als een hoop stenen die weer gaan zweten en dan ben ik zo oververhit dat ik een pauze moet nemen, omdat ik meer dan wc-papier koop. in Target is erg moeilijk. Acht uur werk in mijn fulltime baan lijkt een marathon te lopen.
De lijst gaat maar door. Ik nam mezelf over en zei alleen maar: “Ik voel me niet goed, bedankt dat je het vraagt”, in plaats van te proberen een van de vele dingen die ik nu voel uit te leggen.
Over momenten gesproken, dat is alles wat ik maar kan bedenken. Nu, in dit moment van pijn waar ik woon, in bed, probeer ik mezelf af te leiden van “jouw” (pijn). Morgen, de momenten ervoor, tijdens en na mijn reis met het openbaar vervoer. Over drie weken, op de momenten van de reis van 30 uur die ik ga maken. Hoe zal ik reageren? Wat zal exploderen (dit is hoe het wordt beschreven “wanneer sh * t de fan raakt”)? Hoe lang duurt de overgang van X naar Z? Wanneer moet ik bij Z zijn, moet ik op elk moment vertrekken? Hoeveel energie moet ik gebruiken in de acht uur dat ik zou moeten werken?
Sta elke 45 minuten op om het pijnniveau met vijf procent te verminderen. Loop minstens 4000 stappen om het pijnniveau met 10% te verminderen. Rust na 20 minuten lopen. Blijf minstens negen uur in bed om de volgende dag ongeveer 75 procent te functioneren.
Alles is een berekening, omdat er een fout in mijn database zit.
Er zijn geen standaardwaarden meer in mijn code.
Alles is onbekend.
Overweeg op het werk een collega meer te vertellen over waarom ik gisteren “ziek” ben vertrokken. Ze vroeg nieuwsgierig of ze had ontdekt wat me ziek maakte. Hij antwoordde voor de grap: “Soms word ik ziek.” Toch smeekt het deel van mij dat smacht naar steun en empathie mij om de waarheid te vertellen. Wat er gebeurt, is dat fibromyalgie niet is zoals andere dingen. Wat er gebeurt, is dat fibromyalgie niet weet wat het is.
De meest voorkomende reactie is een herkenning die twee keer wordt verwijderd – ze hebben een kennis (vaak vrouwen) of hun ‘moedervriend’ die ze hebben gehad. Het gesprek stopt. Het is niet zoals de verdomde griep. Mensen weten wat dit is. Mensen begrijpen het. Hij is ziek.
Fibromyalgie is een klasse apart en is voor elke persoon anders.
Mijn elevator-speech gaat meestal een beetje als volgt: “Ik heb een chronische ziekte van het centrale zenuwstelsel die wijdverspreide pijn en vermoeidheid veroorzaakt.” Ik probeer het slecht te laten klinken omdat het slecht is.
Omdat ik wil dat mensen opletten.
Ik wil dat mensen weten over fibromyalgie en wat het doet; de kracht die het heeft om zielen te verliezen terwijl je je verstopt in de schaduw. Hij doet zich voor als andere ziekten, dus ze ondergaan een reeks tests die onze verzekering niet dekt. Het overkomt mijn vrienden en familie met de sceptici. Het zorgt ervoor dat mensen denken (en me laten voelen) alsof ik een leugenaar ben, een nep en lui. Het gaat over mijn werk, mijn relaties, mijn liefde en passie voor het leven.
Ik wil dat iedereen het weet:
Ik ben niet ziek. Ik heb fibromyalgie.
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