A safe home for Long CovidME fighter
Donation protected
Hello :)
I wish I didn't have to do this, but here I am.
Here's my story:
After contracting COVID in 2021, I was diagnosed with Myalgic Encephalomyelitis (ME) and Mast Cell Activation Syndrome (MCAS). This means I am constantly exhausted, hypersensitive to light and noise, dizzy, and have a racing heart, muscle weakness, and neuropathy. I also suffer from migraines and am intolerant to many foods and medications. My symptoms worsen if I don’t rest in a dark room for 4 hours a day. After taking a shower, I am bedridden for 24 hours, waiting for my energy to return. If I don’t follow a strict diet and overexert myself, I lose weight rapidly (10kg/22lbs in 2 weeks in 2022), and my symptoms intensify, often mimicking flu-like symptoms. I am bedridden for 12 hours a day and cannot manage most household chores.
I am asking for your help because I can no longer stay in my current home and need to move quickly:
- My health has been deteriorating over the past few months, and I struggle to use the stairs to access the kitchen. Proper nutrition is vital in managing ME, but the stairs exhaust me, causing me to skip meals and sleep instead, which further harms my condition.
- Summer is the worst season for my health. I am extremely intolerant to heat, which exacerbates my neuropathy, making my skin feel like it’s burning. I can barely sleep, my tachycardia worsens, and I experience severe cognitive issues, sometimes rendering me unable to speak for weeks. Every summer leaves my condition deteriorated, requiring 3-4 months to stabilize.
- My bedroom is unsuitable for my condition. There are large cracks (1-2 cm/0.4-0.8 inches) in the ceiling that let rain into my room, forcing me to place buckets to collect the water. The humidity causes the paint on the ceiling to warp. Poor insulation triggers my MCAS symptoms (stuffy nose, red eyes, sore throat, migraines, shivers, rashes, bad thermoregulation, insomnia, difficulty breathing, joint pain). I can only manage to clean my floors once a year, and the constant dirt aggravates my allergies. This vicious cycle of triggering my MCAS symptoms depletes my energy and worsens my ME.
- I live with my parents, who do not understand my conditions and often do not help me. When they do, they blame me for my condition. Their lack of understanding and harsh words cause me great stress. My mother calls me “old and lazy” and “a dirty pig,” claiming that if I were truly sick, I wouldn’t be able to talk. She accuses me of "stealing" her food (I once forgot to order groceries and took a cup of my parents' rice) and frequently threatens to kick me out. My father sends me pictures of my messy room with the caption “I wonder what kind of disability that is ” . Although my father occasionally cooks for me, i constantly have to argue and justify my need for help. His ambivalence as a helper/abuser leaves me feeling worthless, anxious, and confused. Stabilizing my health in such an unsafe environment is impossible.
- I have contacted social services for assistance with housework and financial aid to move, but they did not understand the urgency of my situation and suggested I undergo exercise rehabilitation to improve. This was particularly damaging because they also explained to my parents that exercise rehabilitation was necessary for my recovery. This increased my family’s skepticism about my condition, leading my mother to threaten to kick me out more often.
My father also told me I need to move out before next autumn so they can save on electricity costs. They want me gone but offer no concrete help or solutions.
How i will use the money :
Friends can help me pack and move, but I need funds for moving costs and transportation (around 400e to rent a moving van + gas 200e). They can also let me stay with them temporarily, but I hope to live independently in a safe and accessible home, which requires paying a security deposit (2 months' rent: around 1000e) + 1st month of rent (500-550e) + 600e for a memory foam mattress.
I am aware of the financial strain many in our community face, so please only donate if you can. I look forward to getting out of this stressful situation and being able to help you in return.
Organizer
Sleepy Cat
Organizer
Paris