I don’t even know where to start
I was diagnosed with MERRF (a mitochondrial myopathy) almost 20 years ago. My health has been a rollercoaster in those years - I would seem healthy as an ox a few months then bedridden the next. Today I am moving ok, but use a wheelchair to get around outside of my house. My balance and coordination is terrible ( I’ve fallen three times in the last month which required stitches twice on my head). My gross motor strength and ability are a zero and I require plenty of time to sleep.
It has now been a week that my 13 year old daughter and I left the hospital after a 5 week stay. The one person who helped me physically is now with a g-tube, requires the entire pharmacy in one day, has every piece of DME imaginable, and now in a wheelchair of her own. The one who helped me out physically is now completely out of commission and I am now her nurse 24 hours a day.
She is my only living child, my baby, and there is nothing in this world I would not do for her. But I am tired. Caring for my medically complex child as a disabled person is by far the hardest thing I have ever done in my life. It has only been 9 days being home from the hospital and I am beyond drained both physically and emotionally. Physically, this is hard for me because I simply do no have strength and endurance. I often cry because I have trouble getting up off of the floor or pain from walking back and forth from one room to the next. Emotionally, I am exhausted because I have been doing all of this on my own. While in the hospital, both my parents and (now ex) boyfriend said they would help both me and m daughter at home. Now that we are home, my parents don’t help me with meals (I can’t even tell you the last time we shared a meal together), or with anything you would think a parent/grandparent would do. Because I demanded my brother to stop smoking in the house they all stopped talking to me. My then-boyfriend also said he would help, but tells me to “control my emotions” and stop complaining. After 4 years, I thought he would understand and allow me to be vulnerable with him, but I thought wrong. I just broke up with him tonight and to be honest, I am not too sad about it. My daughter is always going to be my #1 and if he can’t support me and ultimately her, then he’s not the one.
But now, more than ever, I am sad and disappointed that the people I thought cared most about my daughter and me abandoned us. They spoke promises that they had no intention of keeping. When I needed love and support most, they all turned their backs on me and left me alone. I am so sad and lonely. I don’t have anybody to talk to. I don’t have a shoulder to cry on or someone to just listen. I am alone and I don’t know what to do. #Caregiving #MentalHealth #MitochondrialDisease #Anxiety #Depression #ChronicIllness