Som vi vet kommer fibromyalgi med ett stort antal symptom. Mängden symtom kan variera kraftigt från person till person. Jag skulle inte säga att det var ett symptom som gör det lätt att leva med fibromyalgi. Men jag tror att vissa inte är lika svåra som andra.
Ett av de symptom på fibromyalgi som jag personligen tycker mest svårt att leva är “mistfibro”, även känd som “hjärnfog”: problemen med korttidsminnet och bristen på förmåga att koncentrera eller fokusera. Min man skrattar när jag säger:
“Kommunikation var alltid en av mina starka drag!” De som känner mig bättre skulle hitta humor i det uttalandet också för att de vet hur jag älskar att prata! Jag kan också se humor ur hans synvinkel, men ibland får det mig att gråta.
“Fog fibro” verkar vara i värsta ögonblick när min smärta är hög. Jag tycker det är svårt att hitta mina ord eller jag glömmer vad jag säger mitt i meningen. Ibland stammar jag, uttalar dåliga ord eller säger något som låter helt av ämnet.
Jag svarar på människor med uttalanden som inte är meningsfulla alls. Jag har lärt mig att skriva saker och använda min kalender mycket – mer än någonsin. Under mina bästa dagar försöker jag skratta åt mig eller skratta med dem som skrattar åt mina ord.
På mina värsta dagar bryter jag och gråter, känns som om en bit av mig är borta. Ibland har jag försökt att uttrycka detta för andra och har svarat med “det händer med alla!” Eller “jag gör det också”. De förstår bara inte det.
Det är mer än enstaka “Jag gick in i ett rum och glömde det jag skrev in”. Precis som trötthet av fibromyalgi är mer än en allmän trötthet eller utmattning vanligt för de flesta, är hjärntimm ett extremt symptom som många jag inte förstår
Skrivning, läsning och stavning är svåra ibland, även om det här är saker som var en gång lätt för mig. Jag är ständigt omläsning för att förstå vad jag läser eller skriver eller stavar ord och tittar på dem eftersom de inte verkar vara korrekta – ibland är de och ibland är de inte. Koncentration kan också vara svårt. Om du koncentrerar dig på någon som pratar med mig eller vad jag gör kan det vara en extremt svår uppgift. Ibland känns jag som att lära mig att leva med fibromyalgi, man måste sörja för förlusten av sitt gamla själv, eftersom det förändrar många aspekter av sitt liv.
Det andra symptomet på fibromyalgi är svårare för mig att leva med – vad händer när jag stressas och när jag fysiskt överdriver – det är känslan av min brinnande hud. Vissa beskriver det som en känsla av att deras hud brinner av solen.
Jag beskriver det ofta som en känsla som om jag var i ett husbrand. Innan jag någonsin diagnostiserades med fibromyalgi, använde jag ganska ofta ordet “ardor” för att beskriva min smärta mot min man. Han trodde alltid att det var ett konstigt val av beskrivande ord för att beskriva min smärta.
Det var inte förrän efter min diagnos och undersökning av fibromyalgi att vi båda förstod denna typ av smärta och mitt val av ord.
Vissa säger att det beskrivande ordet “brinnande” när det används för att beskriva smärta är en som bara förstår personer med fibromyalgi. Jag är inte säker på att det är fallet, men jag vet att det är ett vanligt ord och jag lever med symptom nästan dagligen.
Det finns så många utlösare av detta symptom på fibromyalgi. Något som är så enkelt som att inte få tillräckligt med sömn kan få min kropp att känna på det sättet. Jag skulle inte säga att det bara är min hud som brinner, men mer som den kom från insidan ut. En störande konversation kan påverka mig för dagar, ibland mer.
Jag kan också påverkas av en stark lukt är överväldigande, överdrivet skällande av vår valp eller slå min armbåge på något. (Även om överdrivet skällande av vår valp kan orsaka en oönskad symptom, villkorslös kärlek och kamratskap det ett pris värt att betala.) Jag har lärt mig att begränsa den styr liv stress kan utlösa det och eliminera mitt liv vem som orsakar det
För mycket fysisk aktivitet är den enda utlösande faktorn för detta symptom som har varit svårare för mig att anpassa mig själv eftersom jag inte känner mig väldigt bra, men jag lär mig långsamt. Det har lärt mig att välja vilka aktiviteter som är värda den extra smärtan och vilka inte är. Ibland har jag inget val och jag måste bara ta itu med det, men när jag gör väljer jag klokt.
Dessa två symtom är mina värsta symtom på fibromyalgi, förutom fysisk kroppsmärta. Att lära sig att leva med dem har varit en utmaning, minst sagt, men jag gör mitt bästa och det är det som räknas. Vakna upp, lägg på ett leende och lägg en fot framför den andra – mjuka kramar, mina Fibromyalgia-krigare. Håll dig stark!
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