Als je van iemand houdt met fibromyalgie zul je weten dat we last hebben van ernstige pijn die varieert van dag tot dag en van uur tot uur.

Dit kunnen we niet voorspellen. Daarom willen we dat jullie begrijpen dat we soms dingen moeten annuleren op het laatste moment en dit stoort ons zo veel als jij.
We willen dat je weet dat we moeten leren om ons lichaam te accepteren met zijn beperkingen, en het is niet gemakkelijk. Er is geen remedie voor fibromyalgie, maar we proberen om de symptomen te verlichten op een dagelijkse basis. We vragen niet te lijden van deze.
Vele malen voelen we ons overweldigd en kan niet omgaan met meer spanningen dan we hebben. Indien mogelijk, niet meer spanningen toe te voegen aan mijn lichaam.
Zelfs als we er goed uitzien, voelen we ons niet goed. We hebben geleerd om te leven met constante pijn de meeste dagen. Als je ons gelukkig ziet, betekent dat niet noodzakelijkerwijs dat we geen pijn hebben, gewoon dat we er mee bezig zijn. Sommige mensen denken dat we niet kunnen worden zo slecht als we er goed uitzien. De pijn wordt niet gezien. Dit is een chronische “onzichtbare” ziekte en het is niet gemakkelijk voor ons om het te hebben.

Begrijp, alsjeblieft, dat omdat we niet kunnen werken als voorheen, is het niet dat we lui zijn. Onze vermoeidheid en pijn is onvoorspelbaar en daarom moeten we aanpassingen maken in onze levensstijl. Iets dat lijkt eenvoudig en makkelijk te doen is niet voor ons, en kan leiden tot ons veel vermoeidheid en pijn. Niet per se iets wat we gisteren gedaan hebben kunnen we vandaag doen, maar het betekent niet dat we niet in staat zullen zijn om het opnieuw te doen.

Soms krijgen we depressief. Wie zou niet depressief met een sterke en constante pijn? Het is gebleken dat depressie optreedt met dezelfde frequentie bij fibromyalgie als in elke andere chronische pijn aandoening. Het geeft ons geen pijn te depressief, maar we krijgen depressief door de pijn en het onvermogen om te doen wat we gewend zijn. We voelen ons ook slecht als er geen ondersteuning en begrip van artsen, familie en vrienden. Alsjeblieft, begrijp me, met uw steun en helpen u mijn pijn te verminderen.

Hoewel we sliepen de hele nacht hebben we niet genoeg rust. Mensen met fibromyalgie hebben een slechte kwaliteit van de slaap, die pijn erger maakt op dagen dat slecht slapen.
Voor ons is het niet gemakkelijk om te verblijven in dezelfde positie (zelfs als je zit) voor een lange tijd. Dit veroorzaakt ons veel pijn en het kost tijd om te herstellen. Daarom gaan we niet naar een aantal activiteiten die we weten dat deze factor ons zou schaden. Soms gaan we al weten we de gevolgen die het zal brengen.

We zijn niet gek als we soms eenvoudige dingen te vergeten, wat we zeiden, iemands naam of we zeggen het verkeerde woord. Dit zijn cognitieve problemen die deel uitmaken van fibromyalgie vooral op dagen dat we veel pijn hebben. Het is iets vreemds, zowel voor jou als voor mij. Maar laten we samen lachen en ons helpen ons gevoel voor humor te behouden.

De meeste mensen met fibromyalgie zijn beter op de hoogte van deze aandoening dan sommige artsen en anderen, omdat we zijn gedwongen om onszelf te onderwijzen om ons lichaam te begrijpen. Dus, alsjeblieft, als je gaat om te suggereren een “Cure” voor mij, doe het niet. Het is niet omdat ik niet waarderen uw hulp of niet willen verbeteren, maar omdat ik houd me goed geïnformeerd en hebben al geprobeerd veel dingen.

We voelen ons erg gelukkig als we een dag hebben met weinig of geen pijn, als we erin slagen om goed te slapen, als we iets doen dat we niet lang geleden te bereiken, als ze begrijpen.

Wij waarderen echt alles wat je hebt gedaan en kan voor mij doen; inclusief uw inspanning om mij te informeren en te begrijpen. Kleine dingen betekenen veel voor mij en ik heb je nodig om me te helpen.

Wees vriendelijk en geduldig. Vergeet niet dat binnen dit lichaam, pijnlijk en moe, ik ben er nog steeds. Ik probeer te leren leven van dag tot dag, met mijn nieuwe beperkingen en hoop te houden in de toekomst. Help me lachen en zie de prachtige dingen die God ons geeft.

Dank u voor het lezen van dit en wijdt uw tijd. Misschien van nu af aan u mij beter begrijpen. Ik waardeer uw interesse en steun. “

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