Door: Lizo Wilkinson
Ik kan me de laatste keer dat ik iets anders wenste dan ‘mijn gezondheid’ niet herinneren. Zie je, ik heb gezondheidskwesties gehad en het laatste wat ik wilde was ze opnieuw hebben.
Maar dit jaar wenste ik niet voor mijn gezondheid. Dit is het jaar waarin ik een chronische gezondheidstoestand heb ontwikkeld. Het ene moment ging het goed, het volgende moment voelde ik intense nekpijn. In de loop van de volgende weken breidde het uit naar mijn hele lichaam. Mijn dokter had geen idee wat er aan de hand was. Geen van de artsen in de praktijk deed dat.
Na veel doorzettingsvermogen kreeg ik een National Health Service (NHS) afspraak met de spinale eenheid. Hun oordeel? Alles gaat goed. Dat was goed, in sommige opzichten. Op andere manieren was het een beetje een “Oh. Welnu, wat doe ik nu? “Moment. Het was nu al drie maanden aan de gang, dus het kon zeker worden geclassificeerd als chronische pijn.
Pas toen ik onderzoek deed naar de toestand van iemand anders, kreeg ik opeens een idee van wat het was. Een van mijn Twitter-volgers heeft fibromyalgie en toen ik keek om te zien wat dit was, had ik plotseling een openbaring. Dit waren mijn symptomen. Ik heb nog geen diagnose ontvangen, aangezien NHS-wachtlijsten normaal acht maanden lang zijn.
Dus ging ik op internet. Ik ben een blogger genaamd Sam Cleasby dankbaar die informatie heeft geplaatst over leven met een onzichtbare handicap. Ik vond ook veel informatie over fibromyalgie op de website Counting My Spoons van Julie Ryan. Ik lees zoveel verhalen over de fibromyalgie-ervaringen van mensen, zoals het een eeuwigheid duurt om een diagnose te stellen en oudere artsen hebben er misschien nog nooit van gehoord.
Ik las ook veel artikelen over handicaps op deze website en vond deze accounts bijzonder nuttig. Hoe meer ik lees, hoe meer informatie ik verzamelde over hoe te leven met een chronische gezondheidstoestand. Ik volg toevallig hoe dan ook spoonies op Twitter, dus ik reikte hen om advies en hulp. Dit is ook van onschatbare waarde geweest. Zoals ik lees tijdens een van mijn vele onderzoeken naar chronische aandoeningen / invaliditeit, zijn de enige mensen die chronische gezondheid echt kunnen begrijpen, mensen die chronisch ziek en gehandicapt zijn.
Het heeft me een heel jaar gekost om mijn situatie te verwerken. Er zijn veel donkere momenten geweest, en er zullen er nog veel meer zijn, maar zoals elke “fibromyalgia-krijger”, heb ik geleerd dat ik een sterke persoon ben die meer dan in staat is om met mijn nieuwe situatie of met elke situatie om te gaan. Ik heb geleerd me niet rot te voelen als ik de dag alleen maar tv moet kijken. Er zijn een paar dagen dat ik dingen kan doen bijna zoals vroeger, en sommige dagen kan ik dat niet.
Het belangrijkste van alles is dat ik heb geleerd dat een perfecte gezondheid niet het beste is. Je kunt een goed leven leiden met een middelmatige of zelfs slechte gezondheid. En dat is de reden dat ik mijn gezondheid niet wenste. Ik heb geleerd om te gaan met mijn gevarieerde gezondheid.
Ik zou anderen in mijn situatie vertellen om sterk te blijven. Het is niet eenvoudig om doktersafspraken te maken in het VK, dus mijn primaire ondersteuning, advies en informatie kwam bijna volledig van het internet. Als u geen lokale ondersteuning heeft, heeft internet een hele wereld aan informatie. Vergeet echter niet om heel voorzichtig te zijn met het gebruik ervan, want het is een wereld van informatie en ook een wereld van desinformatie.
Zoals ons ‘bovennatuurlijke’ fans tegen elkaar zeggen, blijf altijd vechten – voor medische professionals om naar je te luisteren, voor mensen om te begrijpen en om antwoorden of een diagnose te vinden.
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