First time posting.
I guess you could say I am a newbie to the ME world. I am newly diagnosed but of course symptoms had been going on for awhile. At some point waiting for a diagnosis I gave up hope of getting better. I go back and forth with acceptance, which I know the process of grieving is not always linear. Its been hitting me hard the last few days. Im homebound except to doctors appts and a monthly visit to my parents when my husband can drive me.
I was a nurse for 13 years and had to give up Hospice nursing because my body physically couldn't take it and I felt like my head was full of static all of the time. I guess that was the beginning. I then took a job as a triage nurse in an office when my life came to a hault.
Recently my husband and I have been talking about getting me a wheelchair for when I go to the doctors because it is becoming such a struggle. Acknowledging this is where I am at 34 has got me in my feels. I guess I've gotten use to needing so much help inside my home, but out in the world feels like another thing. I broke down and ugly cried the other night because all I want to do is go to Disneyland and see Blink 182 in concert. I've seen Blink 4 other times but that doesnt matter, I want the ability to go. My mom is planning a girls trip with my sister and nieces to Disneyland and when they were told, my youngest niece asked "does aunt stephy get to go with us?" 😭 Thinking of going to a concert or a theme park makes me exhausted and it hurts me to my core knowing its not possible.
I am a recovering addict and the pandemic allowed me to learn how to sit by myself. I was able to heal a lot from an abusive marriage. As soon as I started to love my life for the first time ever, boom. I feel like throwing myself on the ground and having a toddler tantrum fit. If only I was able to get back up.
I needed to get this out to people who understood. Just like in NA, there is a theraputic value of someone knowing and being able to empathize, not just sympathize, what another person has gone through makes a difference.
Thanks for taking the time to read this. #MyalgicEncephalomyelitis #recoveringaddict #Grief #RN