Fremskridt der gør mig bange

Ligeså meget psykisk nedtur og mistrivsel smerter kan give mig, ligeså meget optur og rus af glæde kan det give når smerten for en stund giver mig en pause. Siden jeg er startet på LDN har jeg haft mange timer med færre smerter. I starten gik det op og ned med smerter on and off.

Jeg blev stadig straffet hårdt når jeg lavede for meget, men kunne samtidig mærke at et hvil på 30 min. pludselig gjorde underværker. Jeg behøver ikke længere planlægge flere timers hvil i løbet af dagen for at kunne holde livet ud.

Jeg har de sidste uger fået det bedre og bedre og har ikke turde sige det højt – hverken til min mand eller børn. Jeg har fortalt at LDN har en virkning, men ikke hvor fantastisk godt det virker. Jeg er så bange for det bare er for en stund, og jeg om lidt vågner op til virkeligheden. Men nu siger jeg det som det er, også må det briste eller bære🙈

Jeg har nu adskillige timer hver dag helt uden smerter. Jeg har haft dage hvor jeg ikke har hvilet ryggen før om eftermiddagen, hvilket ikke har medført nogle større konsekvenser. Jeg har en energi jeg ikke har mærket længe. Jeg kan dog stadig blive lidt træt og få brug for en powernap. De sidste dage har jeg ikke sovet før kl. 1 og vågnet kl. 8 og følt mig frisk og veludhvilet. Det eneste jeg stadig mærker som en stor udfordring, er at sidde ned mere end en times tid. Det er så stor en lettelse at være fri for smerterne, og det er faktisk svært at beskrive. Når jeg mærker rigtig efter, kan jeg stadig fornemme nogle smerter. Men når man har levet med voldsomme smerter i meget lang tid, så vænner man sig faktisk til det – det bliver normalen. Derfor kan jeg føle det som om jeg er smertefri, selvom jeg stadig har lidt ulmende smerter. Mit succeskriterie har ikke været at blive komplet smertefri, for det ville være naivt og tro at det er muligt. Mit kriterie er blot at smerten ikke skal fylde så meget, at den styrer mit liv og forhindrer mig i at være lykkelig. Men på trods af at jeg stadig har lidt smerter, så FØLER jeg mig smertefri. Smerten kommer ind imellem, men det er faktisk helt ok.

Jeg er bange for at give mig hen og gøre alt det jeg har lyst til og har savnet så længe. Jeg er bange for at gøre de ting, der normalt giver mig smerter. Jeg er bange for det faktum, at jeg ikke længere kan mærke hvor mine grænser er. Og jeg er bange for at overbelaste min ryg og fremprovokere en ny skade. Min ryg er svag og skrøbelig, og det er vigtigt jeg ikke glemmer det. Og samtidig har jeg bare lyst til at fyre den af😉

Og for det ikke skal være løgn, så er jeg aller mest bange for, at jeg glemmer alle de vigtige ting smerterne har lært mig. Vil jeg stadig huske at være taknemmelig for de små hverdagsøjeblikke og for livet? Vil jeg stadig have fokus på at prioritere min lykke fremfor at følge strømmen? Vil jeg være i stand til at mærke efter og bruge min tid, på det der giver mig livskvalitet? Vil jeg huske at sætte pris på min krop og passe på den?
Jeg er faktisk glad for jeg har skrevet på bloggen – på den måde kan jeg gå tilbage og blive mindet om, hvad der er vigtigt i mit liv.

Pludselig begynder jeg at have tanker om hvad jeg vil, hvis jeg ikke længere er begrænset af mine smerter. Det er farlige tanker – jeg bliver jo aldrig 100% rask. Men så alligevel? Der foregår en kamp i mine tanker og jeg er smask forvirret. Tænker det må være lidt ligesom at deltage i Tour de France. Det er en pinefuld og umenneskelig kamp hver dag. Man har nok også tidspunkter, hvor man har lyst til at give op og skride fra det hele. Tanker om at man ikke er god nok eller stærk nok. Men efter en lang sej kamp, når man i mål iført den gule trøje. Man har opnået det ypperste – det ultimativt største mål man havde sat sig for. Men hvad så nu? Kan man nu forlange mere? Det er som om man føler sig tom indeni – er kampen slut?

Ved godt det er lidt at sætte det på spidsen, men jeg havde ikke i min vildeste fantasi troet, at jeg kunne komme så langt ned på smerteskalaen. Jeg er jo ikke forberedt på det her. Jeg forsøger at minde mig selv om, at jeg endnu ikke har udfordret min krop med arbejde, træning, husholdning osv. Lige nu holder vi ferie og laver faktisk så lidt som muligt, så der er lang vej endnu. Men lige nu føler jeg mig klar til at komme igang med at finde mine nye grænser, og hold op hvor jeg glæder mig. Tænk hvis jeg kunne få en alm. hverdag med job, træning, familie og venner🤗

Hovedårsagen til færre smerter er helt sikkert LDN, som jeg nu har fået i ca. 3 uger. Jeg startede på 0,75 mg og mærkede en effekt allerede efter 2-3 dage. Over de næste 3-4 dage aftog effekten, og jeg trappede derfor op til 1 mg, som jeg stadig er på. Jeg døjer lidt mere med hovedpine (1-2 gange om ugen), men er i tvivl om det skyldes varmen og evt. for lidt væske, eller om det er en bivirkning. Jeg afsluttede min 100 dages antibiotika kur igår, og er også ret sikker på det er medvirkende til de færre smerter. Inden jeg startede LDN for 3 uger siden, kunne jeg tydeligt mærke forskel fra inden jeg startede AB-kuren. Men lige nu er det svært at vide, om det er AB eller LDN der gør mest for mig. Det er faktisk lidt mærkeligt ikke at have mærket sin krop medicinfri i meget lang tid. Jeg ved i teorien ikke, hvordan det står til. Jeg er holdt med sovepillerne for 4 dage siden. Den første nat var svær, men derefter ingen problemer. Nu overvejer jeg om jeg skal trappe ud af min nervemedicin også?! Det må jeg hellere forhøre mig om hos nogle klogere hoveder, inden jeg går i gang med det.

Det er så nervepirrende at dele denne vilde fremgang med jer. Men lige nu er jeg i hvert fald optimistisk og tror på fremgang – hvor præcis jeg ender det kan kun tiden vise.

Tak fordi du læste med 😊
Kærligst Zinna

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6.006 kommentarer

  1. Hej igen Zinna

    Og igen: Tak fordi du deler dine smerter og nu dine fremskridt og hjælper andre med at forstå denne sygdom.
    Dejligt at høre at AB har virket – den konstatering kan kun få mig til at mene, at det vil gå fremad de næste 2 år, hvor dine knogler heler op efter mikrobrud.
    Også godt at LDN virker godt!
    Du lyder jo næsten helt “normal” igen. Og jeg forstår godt, at du har svært ved at tro på det. Da jeg selv var helt invalid af sygdommen, var det virkelig svært at overbevise mig selv om at jeg kunne komme op af det hul igen. Fordi sygdommen er så vanvittig voldsom og smertefuld.

    Jeg vil lige fortælle dig om en beslutning, jeg traf i slutningen af mit AB forløb. Du vil nok ikke blive glad for at høre den,men husk at den er min og at du må gøre dine erfaringer.
    Jeg besluttede, at jeg ikke ville tage NOGET smertestillende i det første halve år efter afsluttet AB. Årsagen var, at jeg ville kunne mærke mine AB fremskridt samtidig med at jeg var bange for at overanstrenge mine mikrobrud og gøre ondt værre. Så jeg droppede opiaterne (dengang kendte jeg ikke LDN). Jeg har ikke selv gået hos Hanne Albert – hun mente ikke AB ville give mig nok – så jeg kender ikke hendes præcise råd omkring genoptræning. Men som jeg har forstået det, bør man starte stille op med genoptræning og lægge mere og mere på hen ad vejen efterhånden som mikrobruddene heles. Og tager man stærke smertestillende – opiater eller LDN – kan man jo ikke mærke, om man overanstrenger sig. Du skriver det vel også nærmest selv i dit indlæg.
    Men spørg evt. Hanne.
    Fortsat held og lykke med helingsprocessen. Der ER grund til optimisme ud fra hvad du skriver!

    Knus fra
    Søren

    1. Hej Søren
      Tak fordi du fortsat læser med og tak for dine kommentar.
      Jeg har faktisk netop den bekymring du beskriver om ikke rigtigt at kunne mærke efter. Og jeg overvejer stadig for og imod. Jeg er nok bare kommet frem til at efter jeg nu snart har været sygemeldt i 8 mdr. så har jeg virkelig behov for at kunne fungere igen. Jeg har brug for at kunne være mere for min familie og ligeså stille komme igang med lidt arbejde igen. Men jeg er meget bevidst om at jeg skal passe på og tage den med ro. Og det er rigtigt som du skriver at genoptræningen er meget stille og rolig med langsomme fremskridt.
      Tak igen og jeg håber du trives og ikke plages for meget med smerter.
      Kærligst Zinna

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