Een open brief aan mijn vrienden en familie:
Het is moeilijk om fibromyalgie, osteoartritis en chronische ziekte te verklaren. Het is meer dan constante pijn – het is uitputting, gebrek aan energie en een veelheid aan andere symptomen die elke dag heel hard werken. Sommige dagen zijn beter dan andere, en dan heb ik de neiging om dingen te overdrijven om ze voor elkaar te krijgen.
Het is alsof alles wordt versterkt – temperatuur, geuren, geluiden, gevoeligheid voor felle lichten en pijn. Gewoon alles.
Het ding is, hoe hard ik ook probeer, wanneer de tank leeg is, zijn er geen reserves en worden de tolerantieniveaus zilch. Ik moet de energie die ik heb uitlichten, en het is een jongleren en vaak moet ik later betalen. Ik heb de neiging om alleen te zijn omdat sociale interactie moeilijk is geworden.
Enkele van de symptomen die ik ervaar zijn:
- Wijdverbreide pijn
- Stijfheid
- Gewrichtspijn
- hoofdpijn
- Diarree, maagklachten, spijsverteringsproblemen
- Beperkte energie
- Slapeloosheid
- Uitputting
- Depressie
- Angst
- Misselijkheid
- Hersenmist
- Moeite met concentreren
- Moeite met spreken, de juiste woorden spreken, struikelen over hen
- Gezichtsvermogenfluctuaties
- Problemen met balans
- Chronische sinusitis
- Gevoelloosheid en tintelingen in handen en voeten
- Zwelling van gezicht, handen en voeten
- hartkloppingen
Ik doe mijn uiterste best. Sommige mensen begrijpen de ziekte niet. Ik heb besloten om op te staan in plaats van te verhullen hoe ik me voel en wat ik moet doen om mezelf in staat te stellen zo goed mogelijk te leven en het hoofd te bieden. Dit omvat het verminderen van stressfactoren, niet doen wat ik niet comfortabel kan doen enzovoort.
Ik heb het gevoel dat sommige mensen van mening zijn dat het zo erg kan zijn. Natuurlijk ben ik me ervan bewust dat de meeste mensen iets niet volledig kunnen begrijpen tenzij het hen overkomt, maar laat me je vertellen, het is niet zo erg … het is een heel stuk erger.
Ik worstel elke dag, dus verlof alsjeblieft de verwachtingen, accepteer dat ik bepaalde dingen niet kan doen, respecteer beperkingen en neem de dingen niet persoonlijk op. Ik weet dat het moeilijk is voor iemand die gemakkelijk de douche of het toilet kan schoonmaken, bijvoorbeeld om te begrijpen hoe het is als alledaagse taken gigantische proporties aannemen.
Als je wilt helpen, vraag het me – neem niet aan dat je weet wat het beste voor me is. Dingen zijn niet altijd zoals ze verschijnen. Ik zie er waarschijnlijk best goed uit. Probeer niet te oordelen tenzij je in mijn schoenen loopt. Ik wil geen sympathie, ik moet je gewoon proberen te begrijpen.
Ik doe mijn uiterste best.
Ik leer dat ik moet doen wat goed is voor mij, niet wat het beste is voor iedereen, en als dat je beledigt of je gevoeligheden vertrapt, spijt het me. Ik ben voorbij gegaan aan het voorzichtig zijn om niemand te verontrusten of hun gevoelens te kwetsen. Daar ben ik te moe voor. Ik leer vaker “nee” te zeggen.
Tony weet het en begrijpt het. Hij heeft me de laatste tijd vaak aan het einde van mijn leven gezien, wanneer de pijn zo erg is dat ik buiten mezelf ben en de tranen vallen als gevolg omdat er niets anders voor is.
Als u nog steeds niet overtuigd bent, neem dan een gesprek met mijn arts – zij zal u gelijk geven
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