I open my eyes, slightly dazed by the wonderful dream I am an elf. I hop weightlessly through the area. My body parts were filigree - pink the whole dream world. But back to reality. Sometimes my tired legs hurt in the early morning, shortly after getting up. Of course I force my compression stockings, my fingers and my back hurt as well, but it doesn't work without them. It's like my own little prison that there is no escape from. Or is it? I'm mad at the health insurers for not giving me the option to consider liposuction. Angry that you leave me alone with all of my worries and problems. What are you doing? I have to fight for my compression and my lymph drainage myself, justify myself umpteen times ... maybe it's better if I just surrender.
My girlfriend always wears such beautiful things - pants fit her. Skinny jeans look great on their slim legs. She wears boots, she goes to the swimming pool. I love you so much, but I'm so jealous of you that I don't recognize myself. I am sorry myself that I am like this, but I wish nothing more than that normal to be. For me it starts with the socks. These cut in, are too tight ... only extremely wide shoes and wide trousers work. I feel very limited. I just can't develop how I want to. I am constantly reminded that I have lipedema.
It stings, sometimes it burns like fire, it feels strange. I'm afraid. Sometimes it's so bad that I just can't anymore. I'm pushing appointments - and now I'm not meeting my friends for a barbecue. Actually, however, because of the pain I just can't anymore. The whole thing drives me crazy. Put your feet up, swallow pills for the pain. Great life. It frustrates me deeply.
In addition, there is my fear that at some point I might no longer be able to work. My legs have long since stopped allowing me to stand or sit. Kneeling is another thing; the compression cuts into the hollow of my knee. The third time I don't want to take you to the medical supply store for a change, I can't cope without it. I only have two pieces that I wear every day, some of them have holes and are torn. But my doctor says you're still walking. He's the doctor!
Fears about the future - not just professionally. How should it go on privately? My last friend left me because of my sensitivities. He didn't get along with lipedema any more than I do. I just can't run away like him. Will I find a man who will take me for who I am? Who understands that this disease destroys my self-confidence? That I am ashamed I know that I shouldn't, that this is how my body is. Love yourself. Bla bla bla ... if it were that easy !? Then I keep reading that pregnancy makes everything worse. What does that mean for me? Should I have children now? I'm not sure if I want to pass my genes on at all. But what do I worry about that. I miss the man anyway.
I expect more
Nobody can feel what is going on in me. But hey, dear health insurers, dear doctors, I want to say something too. I only have this one life, I'll try to make the best of it. Even if the road is rockier and harder for me. Maybe one can expect a little support from you at some point!
This is a summary of many of the thoughts and feelings that I see in various forums every day.
My dear fellow sufferers, it hurts my soul when I see your status reports. When I read what concerns you and notice how much it is also a burden. I want to let you know, you are NOT alone with this. We'll all get through this and we'll fight to live our lives the best we can. With everything that goes with it! We will fight, live and laugh! Please never give up hope! Life still has so much in store for us.