Door: Jules Bonds
Voor iedereen met fibromyalgie zijn er zoveel verschillende symptomen die van invloed kunnen zijn op uw leven. Voor mij is gebrek aan slaap mijn grootste vijand. Ik kan de hele dag zo moe zijn, geesteloos staren naar een computerscherm of niet gefocust blijven op mijn thuisrit van het werk, terwijl ik eigenlijk ‘s nachts ga liggen, mijn ogen klaarwakker zijn en mijn hersens in een hoge versnelling trappen. Ik gooi en draai me als een vis uit het water en probeer een comfortabele plek te vinden. Zelfs met een nieuw matras, zijn er nachten als ik het gevoel heb dat ik op een rotsbed lig. Mijn rugklachten, ook al slaap ik met twee kussens onder mijn knieën om mijn ruggengraat in een neutrale positie te houden. Mijn nek en schouders krijgen knopen, ook al slaap ik op een orthopedisch kussen. God verhoede dat ik zou omrollen en op mijn zij zou slapen. Het voelt alsof ik spelden en naalden door mijn heupen rijden. Ze kloppen en verstijven en op sommige dagen hebben de botten het gevoel dat ze het vlees gaan doorboren. En laten we mijn voeten niet vergeten, want ze doen ook pijn.
Je zou denken dat ik de nacht heb doorgebracht met worstelen met gladiatoren zoals ik wakker word. Ik ben duizelig, chagrijnig, stijf, spieren met dat “verzwaarde” gevoel alsof ik rondzakken zand en sommige ochtenden sleep, word ik wakker met hoofdpijn. Geweldige manier om de dag te beginnen, vind je niet?
Vervolgens, om nog erger te maken, hoor ik mensen voortdurend zeggen dat ik er moe uitzie. Oh, hier is mijn favoriet: “Je ziet er delicaat uit vandaag.” Gevoelig? Wat zou dat in vredesnaam moeten betekenen? Natuurlijk zie ik er moe uit; Ik ben moe. Ik denk dat het moeilijk is voor mensen om te begrijpen hoe ik om tien uur ‘s avonds naar bed kan gaan, om zes uur wakker word en nog steeds slaperig ben. Wel, dat zijn acht hele uren! Ik zou uitgerust, ontspannen en klaar om te gaan zijn! Wat ze niet begrijpen is diepe slaap. Dit is de slaap die je lichaam herstelt en herstelt; de slaap die je energie geeft om een nieuwe dag te beginnen; de slaap die ik hard nodig heb maar niet kan krijgen! Pas toen ik mijn slaap begon te volgen met een Fit Bit, zag ik echt hoe weinig diepe slaap ik kreeg. Op dit moment krijg ik gemiddeld twee en een halve tot drie uur diepe slaap. Vertel eens, als je elke maand maanden en maanden achter elkaar elke drie tot drie uur diepe slaap zou hebben gevoeld, zou je er ook niet moe uitzien? Zou je je ook niet moe voelen?
Ik wou dat ik eerlijk kon zijn tegen iedereen die me vraagt ”Hoe gaat het met je vandaag?” En geef ze het antwoord dat ze nodig hebben om te horen: “Ik ben moe. Ja, alweer. Ik heb niet goed geslapen. Ik ben doodmoe. Ik raak leeg. Maar goed, bedankt dat je het vraagt! “Meestal vind ik het echter gemakkelijker om gewoon te zeggen” Ik ben OK “en ga door. Ik reserveer mijn echte antwoord voor de weinigen die ik echt waardeer voor mijn antwoord. Ze vragen het niet gewoon omdat het beleefd is. Ik kan het in hun ogen zien. Ze willen het echt weten. Aan deze paar, ik dank u. Het is absoluut niet gemakkelijk om intieme, moeilijke gevoelens met iemand te delen, vooral wanneer je je afvraagt of ze je zelfs geloven of dat ze denken dat je gewoon een grote, dikke drama-koningin bent, op zoek naar aandacht. Het is nog moeilijker als het moeilijk is om je woorden te articuleren, omdat je, door een gebrek aan slaap, de woorden in je hersenen hebben het gevoel dat ze door veld- en veldhindernissen moeten gaan om uit je mond te komen. Dit is nog een reden waarom het soms eenvoudiger is om stil te blijven.
Ik denk dat ik wil dat mensen zonder fibromyalgie of slaapproblemen dit begrijpen: neem niet aan dat ik een goede nachtrust krijg. Ga er niet vanuit dat ik lui ben, want ik slaap twee uur nadat ik thuiskwam van het werken op vier uur. Ik ben moe, in de ware zin van het woord. Ik val niet. Ik ben niet dramatisch bezig. Ik heb een ‘honest-to-goodness’-conditie die een ernstige invloed heeft op mijn vermogen om elke nacht diep te slapen. Op sommige dagen is mijn uitputting en frustratie zo slecht dat ik het gevoel heb dat ik huil of lacht als een waanzinnige vrouw. Er is geen magisch kruid dat mijn probleem zal verhelpen. Een vakantie van twee weken zal mijn fibromyalgie op magische wijze niet laten verdwijnen. Dit is mijn nieuwe realiteit. Beoordeel me alsjeblieft niet, of maak me slechter dan ik me nu al voel.
Dus, aan al mijn mede-fibro-jagers die zich bezighouden met de strijd om een goede nachtrust te krijgen … Ik ken je pijn. Ik ken je frustratie. Blijf alsjeblieft binnen! Ik wens jullie allemaal zoveel goede nachten als mogelijk.
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