Ik ben een vrij open persoon als het gaat om lichamelijke en geestelijke ziekten, maar ik kan ook erg gereserveerd zijn, vooral over mijn chronische pijn en vermoeidheid. Het is niet omdat ik niet wil delen over wat er met me gebeurt, maar omdat ik niet wil dat mensen denken dat ik een “huilebalk” of een “aandachtzoeker” ben. Ik ben niet een van die dingen. Sterker nog, ik ben het tegenovergestelde.
Veel mensen weten dat ik fibromyalgie heb. Wat ze niet weten, is de realiteit van waar ik mee bezig ben. Ze zien een positieve, dwaze, jonge vrouw van 25 jaar in het buitenland, maar ze beseffen niet hoeveel pijn ik voel of hoe erg mijn angst me beïnvloedt. Ik denk niet dat mensen de intensiteit van mijn omstandigheden echt begrijpen. Ik zal toegeven dat een deel hiervan mijn fout is, omdat ik alleen de goede delen van mijn leven laat zien in sociale netwerken, maar het tonen van de minder goede delen lijkt soms een zoektocht naar aandacht. Ik wil geen aandacht, ik wil dat mijn voorwaarden niet langer worden gestigmatiseerd. Ik wil geen medelijden, ik wil dat mensen deze ziekten begrijpen.
Hier is de realiteit van iemand met fibromyalgie:
1. Pijn
Wanneer je iemand vertelt dat je lijdt, nemen ze het niet echt heel serieus. Meestal denken ze dat je een typische hoofdpijn of rugklachten hebt. Ze realiseren zich niet dat hun hele lichaam pijn, steken, naalden, gevoelloosheid of, vaak, een brandend gevoel ervaart. Ze realiseren zich ook niet dat de kleding die ze dragen of de stoffen stoel waarop ze zitten, ook pijn kan veroorzaken. Mensen met fibromyalgie zijn gevoelig voor bepaalde stoffen en materialen. Sommigen van ons (waaronder ikzelf) voelen pijn in hun organen. Ik heb jarenlang ovariële pijn gehad en ik wist niet wat het was totdat ik de diagnose fibromyalgie kreeg.
Onze pijn is vaak ondraaglijk en kan moeilijkheden veroorzaken in alledaagse situaties. Als ik door ernstige uitbraken ga, ben ik soms te laat voor mijn werk. Het lijkt erop dat het niet uitmaakt hoe vroeg ik opsta, het kost me 30 minuten tot een uur om uit bed te komen, want mijn lichaam is stijf, mijn heupen zijn geblokkeerd en mijn handen zijn pijnlijk. Het dragen van een mand met boodschappen kan mijn handen en ellebogen aanspannen, potten openen is soms onmogelijk, huishoudelijke klusjes kunnen alles wegnemen en de lijst kan doorgaan.
2. Vermoeidheid
Als we het hebben over te laat werken, is vermoeidheid een andere reden waarom het zo moeilijk is om uit bed te komen. Ik had de beste droom van mijn leven kunnen hebben, maar het zal voelen alsof ik niet in slaap heb gezeten. Voor mij is chronische vermoeidheid een van de moeilijkste symptomen. Er zijn dagen geweest dat ik nerveus ben om lange afstanden te rijden omdat de zon echt slechte vermoeidheid veroorzaakt. Ik werk op een bureau, maar om twaalf uur heb ik het gevoel dat ik hard heb gewerkt en het enige wat ik wil doen is naar huis gaan en op de bank gaan zitten. En veel succes als ik na het werk iets met me wil plannen. Ik zal te uitgeput zijn om iets te doen. Als je het op weekdagen met je uit laat gaan, komt dat waarschijnlijk omdat ik, hoe moe ik ook ben, echt je bedrijf nodig heb.
3. Hersenmist
Dit is het laatste symptoom dat ik zal aanraken. Hersenmist is op zijn zachts gezegd een teef. Vergeten een gesprek dat hij gisteren volledig had, een halve zin te pauzeren omdat hij vergeten was wat hij zei of een gesprek volledig stopte omdat hij niet de juiste woorden kon bedenken om te gebruiken. Dit is het meest genante symptoom van fibromyalgie. Zich incompetent voelen is ongelooflijk frustrerend en hartverscheurend. Ik vraag me vaak af of mensen me hierom veroordelen. Soms kan ik me niet herinneren hoe een woord gespeld is als ik schrijf. Ik heb mijn sms-berichten, e-mails en social media-berichten verschillende keren gecontroleerd voordat ik op de knop “verzenden” of “verzenden” drukte. De schaamte van hersenmist veroorzaakt me zoveel angst.
Hier zijn enkele andere veel voorkomende dingen waarmee krijgsstrijders kunnen profiteren:
1. Geestelijke ziekte die, maar niet beperkt tot, depressie en angst omvat.
2. Gevoelig voor temperatuur. Zomers, en vooral winters, zijn vaak ondraaglijk.
3. Prikkelbare darm syndroom (IBS).
4. Nachtelijk zweten / warme en koude flitsen.
5. Slapeloosheid.
6. Pijnlijke en onregelmatige menstruatiecycli.
7. Problemen met balans.
8. Tinnitus (oorsuizen).
9. Rusteloze benen syndroom.
10. Uitbarstingen en huidaandoeningen.
Het is heel gebruikelijk dat mensen met fibromyalgie andere symptomen hebben dan anderen. Alle symptomen zijn voor iedereen verschillend, dus het is moeilijk om artsen uit te leggen wat hun symptomen zijn. Patiënten met chronische ziekten lijken hun ziekte meer te kennen dan professionals, en dat kan moeilijk zijn als het gaat om medicijnen en behandelingen. We zitten hier allemaal samen in en we hebben steun en begrip nodig van de mensen en dierbaren in ons leven.
Ik hoop dat dit enig licht werpt op deze vreselijke ziekte. Als u iemand kent die leeft met fibromyalgie, geef hem een knuffel (niet-Jood) en vraag hem wat u kunt doen om hem te helpen. Alleen al om te luisteren zou de wereld kunnen betekenen!
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