Voor de man wiens vrouw fibromyalgie en chronische ziekte heeft

Lieve partner,

Nou, hier zijn we, niet alleen het leven zoals ik weet veranderd, helaas ook van jou! Nu zijn we op een nieuwe reis, het is niet leuk, het is niet spannend, maar eerder een bergbeklimmingsreis met veel pitstops en omwegen verderop. Dus hier zijn enkele dingen die u moet weten wanneer u deze reis maakt, die uw deal gemakkelijker kan maken. Zoals je weet, heb ik een chronische ziekte en zal het leven nooit hetzelfde zijn voor jullie beiden.

Het is geen ziekte die je kunt zien, maar je ziet me worstelen. Het is geen ziekte die je kunt voelen, maar je ziet mijn pijn. Het is geen ziekte die je kunt begrijpen, maar je ziet mijn frustratie. Dingen zullen nooit meer hetzelfde zijn, maar ik kan proberen ze zo ‘normaal’ mogelijk te houden voor het welzijn van onze familie. Dus hoe verklaar je volledig de uitdagingen die voor ons liggen? Er zijn veel aspecten van de chronische pijn / ziekte die ik wil dat je begrijpt, dus we zullen bij het begin beginnen en ik zal je zo goed mogelijk uitleggen zodat je weet en volledig kunt begrijpen wat deze reis zal zijn. Er zijn veel verschillende gebieden om te dekken, dus wacht, het zal een hobbelige rit worden.

Dus, wat wordt dit   fibromyalgie genoemd? Welnu, er zijn zoveel theorieën en definities van wat het is dat bij elkaar komt en sommige definities klinken volkomen verwarrend en hebben geen betekenis terwijl anderen het als een stel symptomen zonder echte betekenis of definitieve diagnose laten klinken, dus het moet alles in zich hebben onze hoofden, maar laten we het toch een naam geven. Dus, ten eerste, ik heb deze “toestand” die de manier beïnvloedt waarop mijn lichaam reageert op pijn. Het “leuke” gedeelte, elke dag kan anders zijn, zodat je op een dag gewrichtspijn kunt voelen en je pijnen in je benen nog een dag kunt stoken. Laten we beginnen met pijn.

Mijn pijn kan van irritant tot extreem variëren van de ene dag op de andere en zelfs van het ene uur op het andere. Soms kan het moeilijk voor me zijn om je precies te vertellen wat pijn doet en hoe het pijn doet, maar ik weet dat het erg ongemakkelijk is en pijn doet. De “vervelende” dagen zijn degenen die ik probeer bij te houden met de dagelijkse taken om het huis functioneel en schoon te houden. Ik probeer ook de andere projecten aan te pakken die blijven kloppen.

Dit zijn typisch de dagen dat ik mezelf tot ver buiten mijn grenzen duw, dus ik weet dat als ik een drukke dag en veel projecten heb, ik misschien een paar dagen later niet blij zal zijn. De dagen dat ik extreme pijn heb, zijn de dagen dat ik het grootste deel van mijn tijd op de bank zal doorbrengen, in bed of in de stoel, terwijl ik me comfortabel probeer te voelen.

Dit zijn de dagen waarop de was, de afwas, het schoonmaken van het huis en de keuken zullen moeten wachten, of ik zal hulp nodig hebben. Je zult waarschijnlijk ook merken dat dit de dagen zijn waarop veel tranen vergoten worden. Tranen van pijn, tranen van verdriet, tranen van frustratie en tranen van weten dat ik mezelf en mijn familie teleurstel. Maar zoals ik heb geleerd, ken je deze tranen en ben je altijd bereid om me te troosten. Je weet dat dit een van mijn meest kwetsbare momenten is en je laat me er zo goed mogelijk mee omgaan, zelfs als het betekent dat ik nog een familiereünie moet missen.

Deze momenten / dagen van pijn kunnen ook veel angst en stress hebben. Maar van wat ik heb geleerd, worden niet alle stress en angst uitgedrukt op dezelfde manier of op een typische manier die veel mensen denken, vooral het deel van angst. Voor de meeste mensen wanneer ze angst of angstaanvallen horen, stellen ze zich mensen voor die in een hoek zitten, opgerold in een bal die heen en weer zwaait terwijl ze een hoop gebrabbel mompelen.

Welnu, angst kan op veel verschillende manieren worden uitgedrukt of gedemonstreerd, waarvan ik het meeste van mezelf heb geleerd. Voor mij zijn de meest voorkomende manieren waarop ik angstgevoelens vertoon, woede en boos worden. Eenvoudige dingen frustreren me, irriteren me en maken me zo chagrijnig dat het niet uitmaakt hoe hard ik probeer kalm, verzameld en aangenaam te zijn; Ik eindig met het bekritiseren van iedereen en alles wat leidt tot gevechten, ruzies en gewoon ongemak voor iedereen. Ondanks hoe hard ik probeer kalm en verzameld te blijven, lijken de kleine dingen op mijn knoppen te drukken en me zo van streek te maken.

Alsjeblieft, weet dat ik heel hard probeer om deze dingen uit mijn rug te laten komen en me geen stress of angst te bezorgen, ik kan er gewoon niet veel aan doen, maar het komt omdat ik fysiek zo ongemakkelijk ben dat soms Ik snap dat je niets meer nodig hebt dan een bepaalde look om me gek te maken! Ik probeer met al mijn kracht om bij elkaar te blijven en de dingen niet lastig te vallen, maar ik weet dat ik soms niet alles binnen kan houden en na verloop van tijd zal overgeven als de Vesuvius.

Je hebt ook geleerd dat wanneer ik met je praat of met andere mensen, dat het soms lijkt alsof ik schuim door een gesprek spuug, ik snel spreek en soms heeft het niet veel zin, het is ook een manier om te ervaren en bezorgdheid uiten. Ik probeer diep te ademen, houd mijn antwoorden in gesprekken, kalm en verzameld, maar ja, soms kan een eenvoudig gesprek mijn angst doen vervagen.

Het zijn niet noodzakelijk de mensen met wie ik praat die me stress of angst veroorzaken, maar alleen de gesprekken in het algemeen die mijn angstmeter kunnen laten vliegen. Als ik midden in deze angst zit, kan socialiseren erg moeilijk zijn. Soms zal ik familiebijeenkomsten of feestjes moeten missen vanwege toegenomen angst en pijn, maar ik weet dat dit niet iets is dat een weloverwogen keuze maakt.

Ik wil me nooit gemarginaliseerd voelen door mijn symptomen of dit alles mijn leven laten dicteren, maar dit heeft een grote impact op mijn leven nu en hoe ik het leef en toch lijkt het altijd te weten wanneer ik echt een “wachttijd” nodig heb “. “Om alle chaos die zich in mijn hoofd afspeelt te verzamelen en te focussen en te kalmeren. Vermoeidheid is de andere belangrijke speler in dit alles. De beste beschrijving van de vermoeidheid die ik heb is dat het een vermoeidheid is die GEEN hoeveelheid slaap ALTIJD zal helpen. Dit is heel waar. Pijn op zichzelf veroorzaakt vermoeidheid. Voeg nu stress, angst, depressie en chronisch vermoeidheidssyndroom toe en soms is zelfs het douchen de grootste taak die ik de hele week kan doen!

De vermoeidheid van een chronische ziekte kan worden samengevat als zo moe dat je denkt dat je niet meer dan een week hebt geslapen, maar je moet doorgaan met alle taken die je gewoonlijk doet. Vermoeidheid alleen kan ertoe leiden dat al onze andere symptomen worden ervaren op vier keer wat u “normaal” ervaart.

Voeg vervolgens slapeloosheid of gevarieerde slaapgewoonten van mensen met chronische ziekten toe, dit is een recept voor lijden. Ja, we zijn moe, letterlijk, de hele tijd. Als we zeggen dat we “moe” zijn, zeggen we niet alleen dat hij slecht geslapen heeft, maar dat we op sommige dagen zo moe zijn dat zelfs de kleinste taak alle reserves uitput die we hebben. En nogmaals, je lijkt te weten wanneer mijn laatste “lepel” is verlaten en je moedigt me aan om te rusten.

Werkloosheid maakt nu ook deel uit van ons vocabulaire en de realiteit. Het feit dat hij niet kan bijdragen aan ons financiële plan is ook nu een groot probleem in ons leven. Het veroorzaakt ons allebei stress wanneer we naar onze toekomst kijken. Dingen zijn niet meer zo toegankelijk als ze ooit waren en prioriteiten zijn veranderd. Echter, met alles wat toegevoegd is aan wat we te maken hebben, blijf je me steunen en verzekeren me dat we zullen overleven.

We moeten nee zeggen tegen meer dingen dan dat we ja zeggen, maar we zullen het op de een of andere manier laten werken. Mijn dromen, aspiraties en carrière in de toekomst moesten worden opgeschort, dus soms, als dat te sterk voor me wordt, knuffelt het me en laat het me weten dat ik nog steeds trots moet zijn op wat ik heb bereikt, maar het troost me om te weten dat als ik het zie, de dingen zo drastisch anders zullen zijn en er niets is dat ik kan doen om dat op te lossen.

Het lijkt misschien altijd te klagen over de dingen die me storen, de pijn die ik heb, de vermoeidheid die me heeft gegrepen, maar je bent nog steeds hier, houd mijn hand vast, wrijf over mijn schouders, moedig me aan om te blijven vechten. Wanneer wij, of een echtgeno (o) t (e) en / of een familielid deze aandoening hebben, lijkt het erop dat we alles wegnemen wat we te bieden hebben. Maar je steunt me, het grootste geschenk dat je te bieden hebt.

Geduld is een schone zaak; het vermogen om te troosten is een geschenk, en begrip en empathie zijn echt zeldzaam. Gelukkig heb je voor mij al deze dingen. En wat onze geschiedenis ook gepland heeft, zijn vermogen om mijn toestand te begrijpen, geduld te hebben met mijn beperkingen en me te troosten op mijn donkerste momenten heeft mij de mogelijkheid gegeven om door te zetten. Dag na dag, zelfs elk uur is het beste wat ik kan doen.

Maar u, wetende dat het leven anders zal zijn voor ons en dat het zich kan aanpassen aan wat we nu hebben, zal het beste geschenk zijn dat u mij kunt geven, en geduldig blijven, begripvol en aanhankelijk met wat onze nieuwe realiteit kan zijn. En, vooral, bedankt voor het begrip dat dit een legitieme diagnose / voorwaarde is. Je liefde en steun houdt me in deze gekke wereld. Ik zal blijven doen wat ik kan, maar ik waardeer uw steun bij deze inspanning!

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