Being the caregiver and also the patient
I was diagnosed with Myasthenia Gravis a little over a year ago. My husband has Sjogren's, Hashimoto's and Parkinson's disease and I am his caregiver. I am on a treatment called Vyvgart infusion, once a week for four weeks then off for three weeks. My symptoms are muscle weakness, and fatigue.
My husband is much worse off than I am, obviously, with three diseases battling him all the time, plus he is diabetic. He suffers from confusion, memory fog, balance issues, extreme muscle weakness and excessive sleepiness.
My goal is to take care of myself so that I can continue to take care of him. We pray together often and that seems to calm things down quite a bit and give us a reprieve from all the cares of this world. We are determined to stick together like glue, and see this thing together unto the end. My prayer today is for all of us going through similar circumstances.
Oh, goodness,
. You have a lot on your plate (what an understatement). I hope you are able to make time to take care of yourself and manage your own health and well being. I know it's easier said than done when the world seems to be pulling us in eight different directions at once.
I hope you find community and support here. And we also have a sister site dedicated to MG, which you are welcome to check out -- https://myasthenia-gravis.com/. And, I don't want to share information you may already have, but there are some great caregiver support groups out there, like CAN (Caregiver Action Network) -- https://www.caregiveraction.org/ and The United Way (via their 211 program) -- https://www.211.org/get-help/caregiver-resources. I hope you and your husband experience a plateauing of symptoms, or even better, an improvement in symptoms, that lasts for a good long time. And I hope you continue to stay stuck together like glue!
Best, Erin, Team Member.Thank you Donna, Having others in our corner helps so much.
, yes it does 😀 We're glad to be in your corner! - Warmly, Donna (Team Member)
Hi
, it is a much easier journey when you have staunch support, and are a refuge for each other. Please know we're also here for support. - Warmly, Donna (Team MEmber)
