Med kronisk sjukdom ska jag alltid betala vad jag gör idag
Saken är att jag alltid har varit bra med saker som inte är gratis. Jag har alltid uppskattat det hårda arbetet och den mycket givande känslan av att vinna något, vare sig det är en lönecheck eller ett enkelt “tack”. Det finns något så tillfredsställande om ett ordspråkigt klapp på ryggen för ett bra jobbat jobb, oavsett vad det kan vara. Jag började arbeta vid 14 års ålder och när jag var 17 år hade jag två jobb. Jag har alltid älskat att arbeta i två jobb. Jag höll mina fickor fulla, betalda räkningarna och höll saker från att känna sig vardagliga och tråkiga. Det var kul att lämna ett jobb för dagen, byta “hattar” och flytta till en annan roll för mitt nästa jobb. Variety är livets salt, eller hur?
Ingenting kunde ha förberett mig för det liv som väntade mig. Ingenting kunde ha förberett mig att vara en av de “utvalda” för att leva ett liv av kronisk smärta och sjukdom. Jag önskar att jag hade vetat. Jag skulle ha gjort mer. Jag skulle ha hittat fler sätt att njuta av god hälsa medan jag hade det. Jag skulle ha valt att inte sova på mina dagar och istället gå upp med fåglarna och satsa på att se gryningen i slumpmässiga och spontana äventyr. Jag skulle inte ha slutat resa. Jag skulle ha varit mer “självisk” med min fritid, så varje minut var ägnat åt att göra något jag älskade
Ingenting kunde ha förberett mig för varje ounce av energi jag använder för varje dag jag lånar från varje dag. För den överväldigande utmattning som jag upplever efter varje enkel uppgift, gillar att klä sig. (Som det vanligtvis inte händer, min pyjamas är mina bästa vänner). Förbered en smörgås eller till och med värma bara en soppa. Ta hundarna på gården, även om jag bara stannar i deras ställe medan de “gör sitt jobb”. Att lägga en massa kläder. Diskmaskinens urladdning. Utföra vakuumet Kasta slumpmässiga ingredienser i en crockpot. Kontrollera posten. Även bara sitter i badkaret.
Jag kommer ihåg att en lång, varm bad var en lyx, något som jag uppskattade och förväntade mig efter en lång dag. Nu? Nu är det en syssla och jag måste mentalt förbereda mig för den energi det kommer att ta för att klä mig, bada mig, torka mig och klä mig upp igen. Och det ska inte nämna de tre dagarna i veckan när jag tvättar mitt hår. Jag älskade att tvätta mitt hår … det varma vattnet runt huvudet mitt, vävdes långsamt och hur jag fick gåskägg när jag rörde varje strand. Jag skulle ligga med hela min kropp under vattnet, bara med mitt ansikte att peka ut. Ibland stannade jag så länge tills vattnet kyldes och jag var tvungen att tömma hälften av det bara för att lägga till mer varmvatten. Det var en glädje! Även det enkla nöjet har stulits från mig. Nu sitter jag i badkaret, kollapsade, mitt panna vilar på kanten,
Nu är badtiden … deprimerande. För mig är det en tydlig påminnelse om hur olika liv är. Det fungerar som en slags skala som mäter min “före detta” och “efter detta”. Livet före och livet nu.
Jag saknar filmerna. En gång vad jag gillade mest: han lämnade. Jag saknar de smutsiga, klibbiga golv och hur mina skor håller sig till spillda läskedrycker när jag gick ner i korridoren. De skarpa sätena som gör det omöjligt att känna sig bekväma. Jag fick ett slag i ansiktet med den överväldigande lukten av popcorn så snart jag kom till parkeringsplatsen. Hur jag genomträngde varje fiber i mina kläder och hår och det tycktes stanna på min näsa i timmar efter att jag lämnade. Jag saknar de bullriga och irriterande godisförpackningarna hos folket bakom mig. Den övervärderade biljetten. Eller ens bara att kunna betala för den dyra biljetten. Jag har inte varit i en film i … Jag vet inte hur länge. Ibland brukade jag gå två gånger om dagen.
Jag saknar pedikyr med mina vänner. Vad som var att skämma bort och slappna av har nu förvandlats till en nedräkning av minuter tills jag kan stiga upp från min stol och gå hem, för att prata lite är ansträngande och lamporna får mig att känna sig illamående. Jag saknar att ha fina fingrar.
Ingenting är gratis. Allt jag gör idag är något jag betalar för imorgon. Som ett energilån. Allting (och jag menar allt) som du gör är vanligt är ett lån med intresse. En resa till mataffären? Ja, det kommer att kosta mig. En snabb lunch ute? Ja, jag ska betala för det. Till dess att skulden läggs till en balans så hög att det inte längre är värt att låna. Det är helt enkelt inte värt de höga betalningarna längre. Träffa med vänner? Nej det kommer inte att hända. Livsmedelsbutik? Nu gör jag det online, så jag behöver inte lämna min bil (men glöm inte: Jag måste låna energi för att ladda ner den när jag kommer hem). Gourmet kök som jag en gång älskade? Ingen kruk av lera.
Det är en handling av delikat balans varje dag, alltid ihåg att även om jag känner mig “bra” idag måste jag spendera min energi med omsorg, eftersom imorgon redan har sin giriga hand öppen och väntar på betalning. Ibland väljer jag att försiktigt försöka för hårt och handlar bara om morgondagsbanken när tiden kommer. Ibland skrattar jag på hur löjligt det är att jag måste planera bara för att vila. Hur roligt är det? Inte roligt “haha”, utan snarare “patetiskt” roligt.
Jag tänker bara på vad som kommer att tänka på en viss dag: det är okej då … Jag måste gå till affären, se doktorn, hämta upp recept, kasta middag i crockpotten och åtminstone stryka åtminstone. Oh. Vänta. Tvätt. Jag antar att det behöver prioriteras över golven. Kanske kan jag göra golv imorgon. Vänta nr. Jag måste ta det lugnt imorgon för att jag lånar energi för idag, så … OK. Jag har det! Store. Läkare. Föreskrifter Lerkärl. Tvättservice, men dubbla inte idag. Aspirera endast på bottenvåningen. Ja, det borde fungera. Så, kanske, imorgon kan jag lägga den lasten i torken och vi kan äta rester för middag och vila resten av dagen. Ja. Överenskommelse Jag ska försöka för det.
Sedan kommer imorgon. Jag insåg snabbt att jag inte övervägde “räntan” av lånet. Jag visste att jag hade lånat energi, men jag glömde att jag skulle komma med huvudvärk, kroppsliga smärtor, trötthet och försvagande yrsel. Den belastningen i torken kan behöva vänta. “Hej,” säger jag till mig själv, “i alla fall är kläderna rena.”
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