Falling Apart

Hi, I’m Emma. I’m 43, I have type 1 diabetes, epilepsy, severe brittle asthma, fibromyalgia, kidney disease, cystitis cystica, lichen sclerosis, bladder pain syndrome, regional body pain, PCOS, Hashimoto’s, arthritis, neuropathy, sleep apnea, and EDAC. I have a lot to cope with, but I'm getting no help with my EDAC. I was diagnosed 18 months ago. I’ve never met the team that is looking after my EDAC. It just all gets told to my asthma specialist, who tells me I can’t walk a few steps without fighting to breathe and pretty much have a permanent chest infection. My oxygen levels are constantly in the 70s-low 80s, especially whilst asleep, yet no one will listen. I get things stuck in my throat all the time, even medication, but they say it’s nothing. There is really no info on the web, and EDAC is just such a lonely condition when no one understands what you are going through. I have 4 young boys and feel like everything has been taken away from me. I very rarely leave the house due to being immunocompromised and sleeping all day. I have no one to talk to when struggling, and it can be very overwhelming to cope with everything that I have going on. I'm not on Facebook, so I can’t join groups on there. I’m hoping there’s someone out there who understands how I’m feeling and what I’m going through daily.