Fibromyalgi diagrammet: “Hvordan forklare fibro til familie og venner”.

Hei familie, venner og alle som vil vite meg.

Hvordan forklarer jeg dette til min familie og venner? Dette er veldig vanskelig å gjøre siden sykdommen min er “usynlig”. Så la meg begynne med å takke deg for at du tok deg tid til å tilbringe litt tid med meg og bli kjent med meg bedre. En persons tid er deres mest verdifulle ressurs, og deres er verdsatt.

{{{Fibromyalgi er en kronisk tilstand preget av utbredt smerte i muskler, ledbånd og sener, samt tretthet og flere ømepunkt: steder i kroppen hvor mildt trykk forårsaker smerte. Myofascial smertsyndrom er en kronisk form for muskelsmerter. Smerten ved myofascial smertsyndrom sentrerer rundt følsomme punkter i musklene som kalles triggerpoeng. Utløserpunktene i musklene kan være smertefulle når de berøres. Og smerte kan spre seg gjennom den berørte muskelen.}}}

Jeg vil snakke med deg om fibromyalgi (FM) og kronisk myofascial smerte syndrom (MPS). Mange har aldri hørt om disse forholdene, og for de som har gjort det, er mange misinformert. Og på grunn av dette blir dommer gjort som kanskje ikke er riktige. Så jeg ber deg om å holde et åpent sinn når jeg prøver å forklare hvem jeg er og hvordan FM / MPS har angrepet ikke bare mitt liv, men også de jeg elsker.

Jeg kan ikke vise deg et fysisk åpent sår for å vise hvor mye smerte jeg føler. Hvis jeg kunne, kan du ta en titt, fortelle meg å sitte ned, ta med meg en pute, gi meg noe å spise eller drikke og ha det bekymret og forstå se på ansiktene dine. Men med fibromyalgi vil mange høre at de foretrekker å ha et knust ben på noe tidspunkt i stedet for å lide den slags smerte som disse lidelsene forårsaker. For meg er et ødelagt ben enda et dårlig eksempel på å sammenligne lidelse med disse lidelsene og en fornærmelse mot de av oss med disse forstyrrelsene.

Du ser, jeg lider av en sykdom som du ikke kan se; en sykdom som det ikke er noen kur for, og som holder det medisinske samfunnet forvirret om hvordan man skal behandle og bekjempe denne demonen, hvis angrep er ufattelige. Min smerte virker stille, stjeler min glede og erstatter den med tårer. På utsiden ligner vi deg og meg; Du vil ikke se arrene mine som du ville med en person som for eksempel led en bilulykke. Du vil ikke se min smerte på samme måte som jeg ville med en person som mottok kjemoterapi for kreft; Men min smerte er like ekte og forfalskende. Og på mange måter kan smerten min være mer destruktiv fordi folk ikke kan se det og ikke forstår det …

Du må se med dine ører og ditt hjerte hva dine øyne ikke kan se. Du må lytte nøye til det jeg sier. Det er mulig at det jeg beskriver, ikke gir mye mening, og det er vanskelig for deg å forstå det. Noen ganger kan det virke som et annet univers fra den jeg snakker. Vet at det sannsynligvis er det. Du trenger ikke å forstå mitt univers fullt ut, og du kan ikke. Men lytt til smerte, lytt til advarselsskiltene når det er tegn på fare der du trenger ekstra hjelp. Jeg liker å kalle det “sende tropper”. Til enhver tid synes jeg ikke å være i kontakt med virkeligheten.

Vær så snill, vær ikke opprørt av min tilsynelatende mangel på interesse for å gjøre ting; Jeg straffer meg selv nok, jeg forsikrer deg. Mine tårer spiller mange ganger når det ikke er noen rundt. Min skam er dekket av en vits eller en latter, men inne vil jeg dø. Du vil høre mange ting om meg som virker lett å løse. Du lurer kanskje på hvorfor jeg gjør de samme “feil” beslutningene igjen og igjen. Hvorfor har jeg ikke lært på dette tidspunktet? Hvorfor kan jeg ikke se mangelen på følelse av atferd? Det kan virke som jeg setter livet mitt sammen og at de treffer igjen på nytt …

Vennligst forstå forskjellen mellom “glad” og “sunn”. Når du har influensa, føler du sannsynligvis elendig med det, men jeg har vært syk i årevis. Jeg kan ikke være elendig hele tiden, faktisk jobber jeg hardt for ikke å være elendig. Så hvis du snakker med meg og jeg lyder glad, betyr det at jeg er glad. Det er det. Jeg kan være trøtt. Jeg kan ha smerte. Jeg kan være sykere enn noensinne. Vennligst ikke si, “Oh, du høres bedre!” Jeg høres ikke bedre, jeg høres godt ut …

Hva skjer her? Er jeg lat, dum, etc? Nei Min hjerne og min fysiske kropp er veldig forskjellig fra din. Jeg opplever livet annerledes enn hvordan du gjør det. Jeg føler meg annerledes enn deg. De fleste av mine “venner” er borte; Selv medlemmer av min egen familie har forlatt meg. Jeg har blitt anklaget for å “spille spill” på grunn av en annens sympati. Jeg har blitt kalt upålitelig fordi jeg er tvunget til å kansellere planene jeg laget i siste øyeblikk på grunn av brenning og smerte i beina eller armene og skuldrene. Smerten kan være så intens at jeg ikke kan ta på meg klærne, og jeg er igjen med tårer fordi jeg mister en annen aktivitet som jeg pleide å elske, og når jeg deltok entusiastisk. Opplever jeg humørsvingninger? Hvis det gjør vondt, kan jeg være sint, trist, deprimert eller noen av verdens hundre stemninger. Jeg vil aldri vite med hvilket humør jeg vil våkne opp. Jeg kan behandle deg grusomt og fortelle deg forferdelige ting; Jeg kan ignorere deg helt, eller gråte på skulderen uten å stoppe når jeg er i Fibro Flair. Kanskje du lurer på hva du sa eller gjorde det du gjorde med meg på denne måten. Vel, du gjorde ikke noe, det er Fibromyalgi og alle dens underliggende faktorer som forårsaker dette.

{{{Mens de mest fremtredende symptomene på fibromyalgi inkluderer generalisert smerte og vedvarende tretthet, kan den kognitive forverringen som følge av denne tilstanden være den mest forferdelige. Vanligvis kjent som fibro tåke, dette symptomet er et konglomerat av kognitive utfordringer. Det er forstått at fibrøs tåke er et fysisk symptom på fibromyalgi, ikke en psykologisk. På samme måte som det ikke er to personer som opplever fibromyalgi på samme måte, har tåkete tåke også et variert utvalg av indikasjoner, som inkluderer: mental forvirring, forvirret tenkning, kortsiktig hukommelsestap, manglende evne til å konsentrere seg eller vær oppmerksom og språkfeil}}}

Det er derfor jeg føler meg som et barn noen ganger. Bare den andre dagen legger jeg eggene jeg kjøpte i pantryet, på hyllen, i stedet for i kjøleskapet. Når jeg snakker med folk, mister jeg ofte tankene mine midt i en setning eller glemmer det enkleste ordet som trengs for å forklare eller beskrive noe. Vennligst prøv å forstå hvordan det føles å ha meg bak meg igjen hjemme for å sørge for at ovnen er slått av etter at jeg lagde et sporadisk måltid. Prøv å forstå hvordan det føles å “miste” nøklene, bare for å finne dem i fryseren. Mens jeg prøver å opprettholde min verdighet, overlater djevelen meg til enhver tid. Jeg har en fysisk sykdom, og det er ikke min feil, og jeg ba ikke om det. Jeg elsker henne ikke, og jeg fortjener henne ikke.

{{{På grunn av det dypeste nivået av søvn syklusen, mangler folk med fibromyalgi generelt tilstrekkelig avslappende søvn. Vi vet at i de dypeste nivåene av søvn, kalt deltabølge søvn, utfører en persons sinn interne interne oppgaver. Under deltabølge søvn blir nyoppkjøpt informasjon assimilert og integrert i hjernen. Manglende evne til å få nok deltabølge søvn påvirker evnen til å huske informasjon og opererer på et normalt nivå av mental effektivitet.}}}

Jeg sover når jeg får noe, er rastløs og ofte jeg våkner med smerter i bena ark eller fordi jeg kontrakt ukontrollert. Jeg går gjennom mange av mine dager, lamslått, med Fibro-tåke ler av meg mens jeg snubler og klamre seg til klarhet.

Solo porque pueda hacer algo un día, eso no significa que pueda hacer lo mismo el día siguiente o la próxima semana. Tal vez pueda tomar ese paseo después de la cena en una cálida noche de julio; Es posible que al día siguiente, o incluso a la siguiente hora, no pueda caminar hasta la nevera para tomar una bebida fría porque mis músculos han empezado a contraer un calambre y bloquearse o sufrir espasmos sin control. Hay quienes dicen “¡pero eso fue lo que hiciste ayer!”. “¿Cuál es tu problema hoy?” El dolor que siento por esas palabras me asusta tanto que he decepcionado a mi familia y amigos; y aun así no entienden.

På den positive siden vil jeg at du skal vite at jeg fortsatt har min sans for humor. Hvis du tar deg tid til å bruke med meg, vil du se det. Jeg elsker å fortelle den vitsen for å få andres ansikt til å lyse opp og smile på min vits. Jeg synes det er morsomt å være med deg hvis du tilbringer tid med meg på min egen lekeplass; dette er mye å spørre om? Jeg vil ikke ha noe mer enn å være en del av livet ditt. Jeg har oppdaget at jeg kan være en sterk venn på mange måter. Jeg er din venn, din tilhenger og mange ganger vil jeg være den som undersøker ditt siste prosjekt; Mange ganger vil jeg være din største fan og verden vil vite hvor stolt jeg er av dine prestasjoner og hvor mye jeg er beæret over for å ha deg i mitt liv.

Alt jeg spør er at du utdanner deg selv om fibromyalgi. Jeg er noen i livet ditt som lider av fibromyalgi. Du tror kanskje du vet alt det er å vite om det, men det er mer informasjon enn du tror. Det er mer komplisert enn du tror, ​​og det er mer en livsforandring enn du tror.

{{{Lån en hjelpende hånd. Hvis du vil være nyttig for noen med fibromyalgi, bare spør hva du kan gjøre. Vær fleksibel med invitasjoner og planer du har laget. Forstå at noen ganger smerten av fibromyalgi er overveldende. Vær aktiv. Ledsag dem til en lege og ta en aktiv interesse i behandlingen. Du kan ta notater på legenes kontor og deretter gjennomgå notatene dine sammen hjemme. Ikke ta ting personlig. Noen mennesker med fibromyalgi lider av plutselige humørsvingninger. Prøv å ikke ta disse humørsvingninger personlig som de er en del av syndromet.}}}

Så du ser, du og jeg er ikke veldig forskjellige. Jeg har også håp, drømmer, mål og denne djevelen. Har du en usynlig demon som angriper deg og ingen andre kan se? Har du hatt å kjempe for en kamp som knuser deg og legger deg på knærne? Jeg vil være ved din side, vinne eller miste, jeg lover; Jeg vil være der slik jeg kan. Jeg vil gi alt jeg kan, lover jeg. Men jeg må gjøre dette min vei. Vennligst forstå at jeg er i en slik kamp selv, og jeg vet at jeg har lite håp om en kur eller effektive behandlinger, i hvert fall nå.

Takk for at du spiste tiden med meg i dag. Jeg håper vi kan jobbe gjennom dette, deg og meg. Vennligst forstå at jeg er som deg.

Så jeg trenger deg til å forstå meg, vær så snill. Ukjent forfatter gjennom merkene til Fibro Color.

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