@alina.sara1: Being bedridden for 10 months has been exhausting and painful. I would literally do anything to get out of this bed but right now that’s not option for me. I am doing everything in my power to improve my quality of life, but my diseases are progressive and getting worse and my body is getting weaker. Over the past six years my condition has worsened significantly and about 10 months ago my body couldn’t even handle getting out of bed. Before then I was able to leave my house/bed for very short periods of time and then go home and face the painful consequences. I unfortunately can’t even do that anymore. Living like this is anything but easy. I have lost an entire year of my life. I’ve missed out on birthdays, weddings, seeing friends, and just experiencing life outside the four walls of my room. If you are in a similar situation please know you are not alone. I try and find joy in the little moments of my life and that helps me every day. Some days are harder than others but I won’t stop fighting 💕 . . #chronicillness #raredisease #crps #chronicpain #ehlersdanlossyndrome

Alina

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Region: US

Monday 20 July 2026 00:41:59 GMT