Lærer jeg det nogensinde?

I dag er en af de dage jeg kan lære af. Jeg har fået et vink med en vognstang rigtig mange gange, men på et eller andet tidspunkt lærer jeg det måske.

For jer der læste mit indlæg fra i forgårs kan jeg fortælle at jeg om natten endte med at stå op og tage morfin🙈 Ja, jeg havde virkelig kæmpet imod hele dagen, men på et eller andet tidspunkt bukker jeg under for smerten.

Når jeg har haft smerter døgnet rundt i flere dage spænder mine muskler i hele kroppen op og medfører bare endnu flere smerter. Det er en ond cirkel og morfin gør at jeg kan bryde ud og få et pusterum og kroppen kan slappe af.

Jeg kan slet ikke beskrive hvor fantastisk en fornemmelse det er når jeg får nogle timer helt uden smerter. Det er som at svæve i en lykkerus – det er som at være lidt beruset (det er nok også morfinen!). Jeg vidste det var vigtigt at bruge den købte tid på noget godt for mig selv og min krop. Så jeg fik arrangeret at jeg kunne lave mit arbejde hjemmefra i går. Dermed undgår jeg køreturen og jeg kan tage arbejdet i små bidder og undgå overbelastning som bare får mig lige så hurtigt tilbage i den onde cirkel. Så jeg tog i svømmehallen og svømmede 1000 m. Det er fantastisk at være i vand, der er ingen belastning på rygraden og jeg føler fri bevægelighed. Varme er jo kendt for at være godt mod gigt og smerter, så jeg sluttede af med en tur i varmvandtsbassinet og i sauna.

Det endte med at blive en fornuftig dag uden ret mange smerter, hvilket jo med det samme smitter af på humøret. Så hele familien (og jeg) var alligevel glade for at jeg endte med at tage noget morfin. Og så vil nogen måske tænke hvorfor jeg ikke bare tager morfin hver dag – kort fortalt så er det stærkt vanedannende og man ender som “narkoman”.

Men denne gang gav det mig et pusterum og en bedre nattesøvn, så da jeg vågnede i morges følte jeg mig frisk og veludhvilet – det er sgu sjældent det sker. Det betød også at jeg kunne komme på arbejde i dag, ja det gik faktisk så godt at jeg havde lyst til at blive længere i dag. Jeg hentede børnene på vej hjem også skulle vi bare lige et smut forbi biblioteket og aflevere bøger. Da vi kommer derned viser det sig at Jacob Riising underholder og børnene bliver selvfølgelig grebet af det. På det tidspunkt har jeg det stadig ok og glæder mig bare over at børnene får lov at opleve lidt. Hjalte og Freya vil gerne have en autograf bagefter – ligesom rigtig mange andre børn🙄 Køen er lang og jeg ved at jeg normalt på det her tidspunkt er godt igang med et hvil. Men jeg vil ikke skuffe børnene og sige at vi bliver nødt til at køre hjem for mor er ved at være træt. Så vi stiller os i kø, og smerterne kommer nu snigende. Jeg forsøger at skjule det for børnene og glæden over at se dem få en autograf og hilse på Jacob Riising giver mig lidt ekstra kræfter. Bagefter mangler vi lige at finde nogle flere bøger til ferien, og nu kan jeg næsten ikke stå på mine ben mere. Så her bliver jeg nødt til at forklare børnene, at de skal skynde sig at finde et par bøger for jeg har brug at komme hjem.

Nu ligger jeg så her igen og ved godt at jeg kunne have undgået disse smerter, hvis vi bare var kørt hjem i stedet for at tage på biblioteket. Men min plan var jo at vi bare skulle aflevere bøger og låne et par stykker til ferien. Jeg har virkelig svært ved at sige fra når det har konsekvenser for børnene, og jeg er faktisk ikke sikker på om jeg nogensinde lærer det. Men i dette tilfælde kunne jeg have taget hjem og fået et hvil inden vi kørte på biblioteket.

Smertehåndtering handler rigtig meget om at forebygge og planlægge hver eneste aktivitet i løbet af en dag, så der tages maksimalt hensyn til kroppen. Der er ikke plads til spontanitet – det er sgu svært for en som mig der grundlæggende er meget spontan og altid har været meget aktiv. Det er så svært for mig at stoppe mens legen er god. Når min krop tillader mig at leve et normalt liv i nogle timer, så skal jeg fortsat indlægge hvil og stoppe INDEN smerterne kommer. Men jeg har jo bare mest lyst til at nyde tiden hvor smerterne ikke har magten over mig. Det er pisse frustrerende….. 

Men heldigvis er den samlede opgørelse for i dag at det var smerten værd, for i dag har mine børn fået en oplevelse, et godt grin og Jacob Riisings autograf👍🏼😉

Det er ofte en opvejelse af hvor stor smerten er sammenlignet med den glæde og næring man tager med sig. Hvis jeg bare altid gør det der er bedst for ryggen, hvilket ville være at sige nej til rigtig mange ting, så vil jeg ikke få ret meget livskvalitet. Så derfor gør jeg ind imellem nogle ting som giver smerter, men i sidste ende kan være det hele værd.

Også lige et par højdepunkter mere fra i dag:

  • Var ved lægen igår for at tale om mulighederne for andet smertestillende medicin og blev henvist til en smerteklinik, og allerede i dag fik jeg et brev med en tid d. 19. april (min fødselsdag – det må være et godt tegn)
  • Ungerne kommer heldigvis jævnligt ind og putter lidt med mig når jeg ligger og hviler ryggen. Øverst et billede fra en hyggestund med Hjalte tidligere i dag❤

Overall en god dag hvor hyggelige stunder med ungerne fylder mere end smerten👌🏼

Tak fordi du læste med 😊
Kærligst Zinna

 

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143 kommentarer

  1. Hej Zinna
    Jeg har opdaget din blog via Vi med modic facebook gruppen og kan desværre genkende det meste. God strategi at holde sig fra morfin og tilsvarende kan jeg sige af dyrt købe erfaringer.
    Jeg er ca 10 år ældre end dig. Havde prolaps for 18 år siden. Først forsøgt trænet væk da det var det nye sort i år 2000 men det hjalp ikke og endte med operation.
    Jeg kom på benen igen men en livs stil alla Bonde røven hvor hele haven blev fræset op, garage bygget så jeg havde et sted jeg kunne lave biler, 1.sal bygget på huset som fritids projekt mens familie, job som med tiden blev til mellem leder job blev passet kunne ikke helt passes, men det tog mig mange år at accepterer og jeg er ikke sikker på jeg er i mål endnu.
    Jeg ser de fleste praktiske og strategiske opgaver som: Lad os/mig komme i gang inde i hovedet.
    Jeg er uddannet automekaniker. Kom i lære som 15 årig fordi jeg vidste det var det univers jeg ville være i. Knoklede i tåbelige arbejdes stillinger mellem 8 og 16 og endnu mere tåblige stillinger med hobby projekter i mange år. Blev senere værkfører siden hen. Planlægning og ansvar for 10 – 12 menneskers dag, kunde betjening målt i begge ender og ikke mindst firmates bund linjer.
    Jeg forsøgte omskoling til maskinmester efter den første prolaps men måtte kaste håndklædet efter et par måndender. En times transport til og fra skole og en lektie mængde der gør ingeniør uddanelsen til A Walk In The Park gav så mange sidene timer så jeg ikke kunne holde til det. Kommunen ville ikke stille en stol til rådighed hvilket de på skolen sagde var ret normalt.
    Hvor om alt ting er så fik jeg job som faglærer på teknisk skole i 2002 og følte mig Home Free.
    Jeg havde drømt om det job siden jeg stod i lære. Elsker at have med unge mennesker at gøre. Min far var kørelære og på sin vis kan kan man fristes til at sige æblet ikke falder langt fra stammen.
    Her kunne jeg bruge mine erfaringer og undgå dårlige arbejdes stillinger tænkte jeg
    Efter et par år vendte ryg smerterne tilbage for fuld smadder. Jeg blev scannet, følte jeg fik en sludder for en sladder om der ikke var tydelig prolaps, men det kan man ikke altid se før man er der inde af en kirurg som tilbød en ryg stabiliserende operation hvor knoglemavel skulle få to ryg hvivler til at gro sammen med det formål at bevægelses ikke kunne irriterer nerven.
    Jeg har scanningen fra dengang på Cd og der er tydelig modic forandringer men hvem vidste noget om det dengang.
    I min nød takkede jeg ja til operationen.
    Incl vente tid, gå hjemme med korset hed det 9 mådneres sygemelding.
    Operationen hjalp ikke og jeg følte jeg holdt min arbejdesgiver for nar. Jeg fik det værre af at deltage i hospitalets tilknyttede genoptrænings program. Fyssen vidste ikke hvad hun skulle sige. Kirurgen sagde: Du er kommet ind i en ond spiral og skal bare gang igen for der efter at prale af han var blevet Headhuntet til et privat hospital…………………….
    Året efter blev der foretaget endnu en ryg stabiliserende operation. Denne gang med søm og skruger på et niveau mere. Det hjalp ikke. Syge meldingen rendte ud og hele møllem igennem i den offentlige mølle. Jeg har været til møder med socialrådgiveren hvor jeg måtte ligge mig på gulvet fordi jeg ikke kunne holde ud at side mødet igennem
    Fik kommentaren: Jeg kan godt se du har ondt men du passer ikke ind i de kasser jeg har til rådighed_

    Jeg blev henvist til tværfaglig smerte behandling men efter at være blevet visiteret et seriøst sted en lille times kørsel fra min daværende bopæl måtte jeg se i øjerne at jeg ikke kunne holde til transporten. Jeg kan køre bil med special sæde og automat gear 20 min. Men det var jeg helt ikke såbevidst om på daværende tidspunkt som jeg er i dag.
    Som nødløsning fik jeg X antal samtaler med en lokal psykolog uden erfarin med smerter og blev tilknyttet palliativ enhed på det nærmeste hospital.
    Set i bakspejlets klare lys ved jeg at de udelukkende har med cancer patienter et gøre.
    Der blev prøvet alverdens præparater af uden succes. Næst sidste bud var smerte plaster. Det lød lovende men jeg var ikke smerte dækket. Dosis blev sat op og det begyndte at kilde i mit ansigt, men jeg var stadig ikke smerte dække. Dosis blev sat op og det endte med jeg var ved at rive huden af mig selv.
    Nu var gode råd dyre men overlægen præsenterede mig for en slikkepind med samme virke stof om plasteret, Fentanyl.
    Jeg stod i en situation med en sammenbragt familie, intet funktions niveau og stille ikke mange spørgsmål. Jeg skulle bare have mit liv til at virke.
    Planen fra palliativ enhed var at jeg kunne tage sådan en slikkepind PN
    Og det gjorde jeg så, men PN blev med tiden en konstant faktor i mit liv og det løb helt af sporet
    Jeg ringede til sygeplejersken og bad om flere, overlægen skrev lystigt recepter ud.
    Det endte med jeg fik fentanyl der svare til 600 mg ren morfin i døgnet:
    Det ønsker jeg ikke for min værste fjende men tilbage står jeg som ex recept ordineret junkie og de følger det har, ødelagte tænder mv.
    Men jo. Der var en lille stemme i mit hoved der fortalte mig jeg var ved at bevæge mig ud på et skråplan. Set i bakspejlet brugte jeg bedøvelsen i forsøg på at kunne leve på til mine egne forventninger og tidligere præstations niveau.
    Men hvor blev dem med den hvide kittel af Som jeg til at starte med troede var til for at hjælpe mig?
    På et kalenderår fik jeg medicin for mere end en million kr.
    Til glæde for hvem?
    Det gavnede ikke mig og min familie, tvært i mod.
    Det gavnede vist heller ikke det samfund jeg helst skulle kunne tilbyde min arbejdeskraft.
    Jeg tilhører derfor IKKE gruppen der er utilfreds med at lovgivningen er ændret og bevirker at man skal møde op hos lægen når stær medicin skal udskrives. Jeg har fået tramadol/dolol og Lyrica i årrevis. Jeg hader det men er heldigvis ved at trappe ud.

    Sorry
    Det blev en meget lang kommentar men jeg fik luft
    Er det ikke det blogs er til for 😉

    1. Hej Martin
      Tak for din lange kommentar – det er lige netop det min blog også kan bruges til. Du har været meget igennem og jeg fornemmer fra de fleste med lign. lidelser at vejen til et stabilt liv er lang og kringlet, og slet ikke en garanti. Vi skal selv tage initiativ og kæmpe for en holdbar løsning. For mig har det været rart at skrive med andre i samme sted og ikke føle mig alene med det.
      Håber du snart finder en mere holdbar løsning og en stabil hverdag.
      /Zinna

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