Please help me to make sense of life again – Hjælp mig med at få mening i livet igen

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Hjælp mig med at hjælpe andre - Help me help others


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Jeg har dannet denne forening for at hjælpe pårørende til en bedre forståelse af sygdommen Fibromyalgi.

Jeg fik selv stillet diagnosen for 4 år siden og har efterfølgende levet med smerter i kroppen hver dag. Det startede som en svag smerte i venstre albue, der blev undersøgt af min læge som sendte mig videre til en reumatolog og her fik jeg så stillet diagnosen.

Fibromyalgi er en meget svær sygdom at leve med, den bliver kaldt den "usynlige" sygdom, fordi man ikke udadtil ser syg ud.

Den gør bl.a at jeg har svært ved at rejse mig op, har ondt i ryggen, knæene, fødderne, kan ikke sidde i samme stilling for længe ad gangen, for så kan jeg ikke strække mine ben ud uden voldsomme smerter. Jeg kan ikke gå hurtigt, kan ikke løbe, bliver ekstremt træt, har svært ved at koncentrere mig og glemmer ofte hvad ting hedder. Jeg bliver forpustet hvis jeg skal gå op ad 4-5 trappetrin og kan ikke stå op for længe ad gangen.

Livet blev pludselig meget svært, reumatologen fortalte at sygdommen er uhelbredelig, men ikke dødelig. Hun sagde, at jeg skulle forvente at det ville blive hårdt og ensomt at kæmpe imod, ikke kun privat men også med det offentlige, fordi den ikke har været anerkendt i så mange år og folk har rigtig svært ved at forstå hvad det er for en sygdom. Hun fik ret, det har og er stadig sindssygt hårdt, jeg har aldrig følt mig så ensom som efter jeg har fået denne sygdom.

Jeg mistede lysten til livet, kunne ikke holde ud at græde hver dag, sidde inde i min lejlighed, ikke have overskud eller kræfter til at gå ud, jeg fik en depression, var træt af alt også at skulle forklare folk at det altid gør ondt og at jeg ikke kan så meget, for bare at få et blik af undring og mistro, så jeg gav op, jeg kunne ikke se en fremtid, og jeg kunne ikke acceptere at skulle leve sådan, indtil jeg fik min mentor som altid var lydhør og forstående, som havde troen på mig, den opbakning jeg fik og stadig får, har gjort at jeg er kommet meget langt, at jeg har troen på og styrken til ikke at give op.

Derfor har jeg dannet denne forening, jeg vil gerne hjælpe pårørende til at få en bedre forståelse af denne meget svære og usynlige sygdom, både for at hjælpe familie, eller venner men også den sygdomsramte. Jeg ved fra min familie hvor svært det er at forstå og forholde sig til fibromyalgi, og vil rigtig gerne skabe mere opmærksomhed omkring hvordan man kan støtte og hjælpe alle i en familie hvor der er et medlem med sygdommen.

Jeg søger derfor økonomisk støtte til opstart, til computer, printer, kontorinventar, til at komme i gang med at få lavet materiale til oplysning, så jeg kan nå så mange som muligt. Jeg håber at du kan se mulighederne i min forening og derfor godt vil give din støtte, og jeg takker af hele mit hjerte for alt den støtte jeg kan få. Og tusind tak fordi du ville bruge tid på at læse min historie og tro på at jeg vil gøre en forskel, at jeg vil hjælpe en masse ved at danne denne forening, hvor både familie og den syge kan spørge om alt, men også vil få mulighed for at mødes og tale sammen, mærke at de ikke er alene og se at der er en fremtid i vente for dem også, og hvor jeg kan fortælle om hvordan det har været og nu er for mig, og vise min støtte til dem.

Det vil betyde mere for mig end jeg kan forklare, jeg vil være evigt taknemlig hvis jeg for hjælp til dette, da det er en stor del af mit liv og min fremtid. TAK



I have formed this association to help families to a better understanding of the disease Fibromyalgia. I myself was diagnosed 4 years ago and have subsequently lived with the pain in your body every day. It started as a slight pain in the left elbow, which was examined by my doctor who sent me to a rheumatologist and here I got so diagnosed.

Fibromyalgia is a very difficult disease to live with, it is called the "invisible" disease, because one doesn't outwardly look sick. It does that I have a hard time to stand up, have pain in the back, the knees, the feet, can not sit in same position for long periods at a time, so I can't stretch my legs out without extreme pain. I can't go fast, can't run, being extremely tired, have difficulty concentrating and often forget what things are called. I get winded if I have to walk up 4-5 stairs and can't stand up for long periods at a time.

Life suddenly became very difficult, rheumatologist told that the disease is incurable, but not fatal. She said that I should expect that it would be hard and lonely to fight against, not only the private but also the public, because it has not been recognized for so many years and people have really hard time to understand what it is for a disease. She was right, it has and is still insanely hard, I've never felt so lonely as when I've got this disease.

I lost the desire for life, could not bear to cry every day, sitting inside my apartment, not have the profits or the strength to go out, I got a depression, was tired of all the also to have to explain to people that it always hurts and that I may not so much, just to get a glance of undring and suspicion, so I gave up, I couldn't see a future, and I could not accept having to live like this until I got my mentor who was always responsive and sympathetic, who had faith in me, the support I got and still get, have done that I have come very far, that I have the faith and strength to not give up.

I have therefore formed this association, I would like to help caregivers to gain a better understanding of this very difficult and invisible illness, both to help family or friends but also the affected. I know from my family how hard it is to understand and relate to fibromyalgia, and would really like to create more awareness about how you can support and help everyone in a family where there is a member with the disease.

I, therefore, seeks financial support for start-ups, to computer, printer, office furniture, to get started with to get material for information, so I can reach as many as possible. I hope that you can see the possibilities in my association and therefore good will give your support, and I thank you from the bottom of my heart for all the support I can get.

And thank you because you would take the time to read my story and believe that I will make a difference, that I will help a lot by forming this association, in which both the family and the sick can ask about anything, but also will have the opportunity to meet and talk together, feel that they are not alone and see that there is a future in store for them also, and where I can tell about how it has been and now is for me and to show my support for them. It will mean more to me than I can explain, I would be eternally grateful if I help with this, as it is a big part of my life and my future. THANK you







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  • Anonymous
  • Donated on Dec 02, 2018
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  • Anonymous
  • Donated on Dec 02, 2018
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