Narcolepsie: De hele waarheid
“Om te leven moet men wakker zijn.
Ik heb nog nooit iemand ontmoet die volledig wakker was…”
-Ralph Waldo Emerson
Een Dag uit het leven van een Narcoleptic
Narcolepsie & Begrip er voor
Om te beginnen dient u te begrijpen dat ieder geval van narcolepsie uniek is, met verschillen in de mate waarin het voorkomt en de bijwerkingen.
Er zijn geen ’standaard behandelingen’, en er zijn zeker geen standaard conclusies in verband met de oorzaak of oorsprong en ook de diagnose verschilt per narcoleptic.
Veel van de narcoleptics die ik ken lijden niet aan dezelfde slaap problemen, anderen die wel of juist geen kataplexie verschijnselen hebben.
Wij hebben allemaal de neiging om, zonder dit te kunnen controleren, zwaarder te worden, ’s nachts krampen te hebben, problemen met dromen en de REM slaap.
Bezoek de Narcolepsie Website als u meer wilt weten en de gevolgen ervan te begrijpen.
Wat mij niettemin stoort zijn narcoleptics die een gevaar op de weg zijn omdat zij hun medicijnen niet innemen en geen geregelde slaappatronen volgen.
Dit werkt niet altijd, maar in het geval van narcolepsie is het geen onbekende factor.
Wij weten het als wij moe zijn, en weten wanneer wij niet zouden moeten rijden, en kunnen er soms iets aan doen.
Hoe kunnen wij erkenning krijgen? Wie begrijpt onze afwijking?
De overheid is er snel bij om ons te vertellen dat wij niet meer kunnen rijden!
Maar zij is niet genegen om te helpen bij het vinden van een baan, vervoer of het verstrekken van arbeidsongeschiktheids inkomen.
Dat is natuurlijk geen probleem… tenzij u inkomsten moet hebben om te overleven; om te eten, enz.
Narcoleptics worden aangevallen door verzekeringsmaatschappijen omdat zij ons niet willen begrijpen, en er meldt zich niemand om ons te helpen.
Sommige artsen schrijven Modafinil/Provigil in hoge dosissen voor, die bij sommigen van ons een hartruis veroorzaakt, en als het gevaarlijk wordt, en niet efficiënt is geweest, moeten wij er mee stoppen.
Sommige artsen schrijven amfetamines voor. Voor mij, is dat de drug die werkt. Het werkt voor iedere narcoleptic anders.
En, toch ondervind ik vreselijke bijwerkingen van het innemen van amfetamines. Hoofdzakelijk is het de geestelijke uitputting, meestal in de vorm van spanning, niet zozeer fysiek.
Narcolepsie: Hoe vernietigt dit een bestaan?
Probeer eens om een baan te krijgen als u tijdens het sollicitatie gesprek in slaap valt?
Of u moet aan uw werkgever uitleggen waarom u op het keyboard slaapt, of zit in een houding, die op slapen lijkt?
Die kwesties helpen niet om gemakkelijk een werkgever te vinden.
En, van de kleine bedrijven zijn er weinig die de middelen hebben om de aanpassingen te verstrekken die narcoleptics nodig hebben; noch zijn zij, door wettelijke normen, verplicht om dit te doen.
Hoe is het op school? De meeste narcoleptics die zoals ik intelligent en creatief zijn, toch laag betaalde arbeid verrichten.
Maar kunt in een klas zitten en informatie onthouden als u door de helft van uw klassen slaapt?
Dus heb ik nu geen officieel onderwijs, en moet ik laag betaalde banen aannemen (waar mijn slaap zich in het succes mengt), en het leven onder ogen moet zien waar ik door anderen wordt veroordeeld als, ‘ LUI, ‘ een ‘ onverantwoordelijke dwarsligger die de hele nacht feestviert” In de ogen van het publiek een ‘verliezer’,.
Maar daar houdt het niet op.
Hoe voelt het als u tijdens een film, een toespraak of afspraak met uw ogen half open in slaap valt?
Niet precies de visie van uw omgeving. Velen proberen geduldig te zijn en narcoleptics te begrijpen, maar een enkeling vindt het geduld en of begrip hiervoor.
Ik heb een relatie en huwelijk door deze stoornis verloren. Ik kan deze verliezen nog wel begrijpen.
En toch, het houdt daar niet op. Narcoleptics, vooral zij die ook cataplexy hebben, kunnen niet lachen of joviaal zijn of veel pret hebben, en het is moeilijk om uit te gaan of, goed voor gasten te zorgen.
Plotseling, wordt het leven van een alleenstaande vader eenzaam, en na 5 jaar van alleenstaand ouder, moet ik het aanvaarden om de rest van mijn leven alleen te zijn. Ik kan niet begrijpen wat het betekent om liefde te krijgen of te geven
Ik veronderstel niet dat ik ooit iemand op deze wereld zal ontmoeten die de liefde, geduld en begrip kan opbrengen om met mijn stoornis om te gaan.
En houdt het daar op? Natuurlijk niet. Ik kan eindeloos praten over problemen met het ouderschap, koken, een huishouden voeren, mijn gezin van twee te beschermen, enz. Maar dat is een ander verhaal. Hier, wil ik dat mensen deze verschrikking, deze levens bepalende verschrikking begrijpen die ons leven vernietigt, mensen in de ziel aantast, en hun levenslang blijft kwellen.
Alleen dan kunnen mensen begrijpen wat het is om narcoleptic te zijn.
Het is de hoogste tijd dat iemand de waarheid van deze ziekte behandelt.
Aangezien er aan narcolepsie weinig aandacht wordt besteed door de zorg instellingen en/of de overheid, waardoor de meerderheid van de patiënten geen juiste behandeling krijgt, wil ik er iets over zeggen en ik doe dit omdat ik narcoleptic ben, en heb alle bijwerkingen die er zijn.
Er is een overvloed aan onderzoekers die een stuk van mijn hersenen of om mijn bloed willen om dit kosteloos te testen, maar niemand die er iets om geeft wat het voor ons betekent of ons hulp aanbied.
Ik heb auto’s, banen, onderwijs, een verhouding met de moeder van mijn zoon, de strijd als alleen staande vader, dag op dag verloren tegen deze stoornis. De neurologen vertellen me dat ik lui ben, een hypochonder die te laat opblijft. HAHAHA - vraag narcoleptics hoe hun leven is vernietigd, en u zult er anders over denken. Als ik een manier wist om de wereld er van bewust te maken wat er met 50.000 + mensen gebeurt. Om het even welke ideeën? Laat me het weten.
Hier zijn de problemen en beperkingen verbonden aan deze ziekte:Slaperigheid:
Dit is niet helemaal waar. De hoofdoorzaak van ons probleem is dat wij lijden aan een gebrek aan REM slaap, en wij worden gedwongen in de periode van de diepe REM slaap. Tijdens deze periode is het lichaam verlamd. Juist omdat, als u droomt, u zou handelen volgens de droom en dat zou potentieel slecht en gevaarlijk kunnen zijn.
Dus, overdag op willekeurige tijden, vallen onze oogleden dicht, onze visie wordt wazig, woorden onduidelijk, en worden gesprekken gevoerd met vreemde verklaringen die geen verband hebben.
Hier een klein scenario wat u kunt doen om u een idee over te vormen (zoals omdoen van een blinddoek om te zien wat het als blinde moet zijn).
Slaap 48 uur niet. U eet 3 keer per dag een zeer volledige maaltijd, en een warme oliemassage (slaap niet) vlak voor het begin van de derde dag.
Dan, op dag 3, doet u niets wat u wakker kan houden. Nu de volgende 24 uur, niet dagdromen, niet slapen, en niet uw oogleden dicht doen. Tijdens de dag, ga door met uw normale routines, maar concentreer op het volgende:
Een goede volledige maaltijd, een hete en of warm bad of douche, een stille rit op landwegen met de verwarming aan en rustige achtergrond muziek. Lees een boek. Ga naar de film. Heb een goed gesprek. Vergeet niet uw normale dagtaak, uw kind en het huishouden tijdens deze tijdspanne te doen. Als u hoofdpijn hebt, neem een aspirine, maar geen slaap.
Fysieke Kwesties:
Draag meerdere lagen kleding, aangezien u meer moet wegen.
Als u enkel, pols of taillegewichten hebt, kunt u die in plaats van extra kleding dragen.
Voeg minstens 10 to 20 kilo extra gewicht toe. Dit is het absolute minimum voor de gedwongen gewichtsaanwinst van een narcoleptic, neem amfetaminezout als medicijn. Cataplexy: U zult ook een vriend nodig hebben. Zodat telkens als u lacht, boos wordt, schreeuwt of emotie op om het even welk niveau toont, zij op uw rug kunnen klimmen. U zult de enorme spanning moeten bestrijden van uw lichaam dat onder u wilt instorten. Dit zou ongeveer 30 tot 40 seconden per keer moeten duren. Het nemen van GHB is een geschikt substituut voor het vriendsysteem. ( succes er mee… hehehehehe:) - de apotheek die de ‘ ‘Rape drug ‘, (waarvan ik een klinische proefpatiënt was). Het is een psychotrope drug!
(nu is het bedtijd… uiteindelijk. Phew, dat was taaie huh? Niet waar? Goed, ik maak me niet ongerust, u hebt u nog niet echt gedaan wat het is om narcoleptic neemt te zijn.
De verschrikkingen van de nacht (Hypnagogic Hallucinaties): Slaap van 10:00 pm. tot 12:00 am. Tijdens dit slapen, moet er zijn iemand daar die af en toe met u knoeit, die u duwt, die uw benen dwingt om rond te gaan en u over het algemeen actief bezig houd. U zult dan wakker moeten blijven van middernacht tot 1:30 am. U kunt opnieuw om 1:30 slapen Tijdens deze slaap, zal uw vriend u afschrikwekkend angst aanjagen boze geesten/monster lawaai laten maken. Zij moeten gesprekken met u aangaan methoden gebruiken van het maken het schijnen als doen zij oneven dingen in uw huis zonder u die eigenlijk hen zien. Telkens als u ontwaakt of omhoog zit, moeten zij zijn gegaan, zodat u aan uw verstand begint te twijfelen en u afvraagt of u al dan niet u droomde of wakker was… Deze activiteiten moeten luid genoeg zijn om u te wakker te maken en u een beetje bang te maken. Dit zou tot 3:00 am moeten duren. U zult dan tot 5:00 am wakker moeten blijven. U kunt nu gaan slapen, als u maar om 7:00 am opstaat. Een uitgerust gevoel? Dat dacht ik al. Ga nu terug naar het begin van dag 3. En ga nu de volledige 24 uren, zoals hierboven vermeld nog een keer doen.
Onze gelukwensen. Nu u alles van het voorgaande een paar keer heeft gedaan zijn uw slaappatronen vernietigd, en wordt u gereduceerd tot wanhopig gevoel voor rust.
Ga nog één normale dag door (gewoonlijk 16 - 18 uren) met de zelfde hierboven vermelde beperkingen en u weet wat het (voor een deel slechts) als narcoleptic IEDERE DAG is.
En vergeet niet dat: u moet werken, een kind opvoeden, schoolfuncties bijwonen, de financiën bijhouden, koken en schoonmaken als u wilt begrijpen wat het is om een één-ouder opvoeder met narcolepsie te zijn.
Meer weten? Kijk op de website van de Nederlandse vereniging van narcolepsie Patiënten
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