Need support - my mother is dying and I can't leave my house to see her

[[Re...]]

Hello BenzoBuddies,

I'm looking for support and maybe some wisdom. I'm 62% of the way down my taper. My symptoms have lessened quite a bit. Here is the issue: I have MS; when my nervous system gets pushed too much, I stat to have symptoms. This is terrifying to me, especially since the only treatment for an MS relapse is steroids, and I can't have steroids. I haven't left my yard much at all in over a year. My mother is in the hospital, in very rough condition. Though I have been there for her by this whole time phone -- talking with her many times a day, advocating for her in her many hospital stays, etc -- I haven't seen her in person since January. I'm afraid that going to see her will push me into MS relapse. I'm afraid that not going to see her will mean missing my chance to see her in person before she passes away. If people could see the full-body cast that my nervous system is in, they wouldn't judge me, but they can't. No one understands why I can't simply jump in the car and go, and even thinking about it makes me reel.

Any ideas, words of wisdom, advice, experience welcome. 

[[pi...]]

@[Re...],

I'm sorry that your mother is ill, it's s not easy to deal with our parent's health problems. For so long they were the ones who took care of us, and now the roles have reversed. This is difficult for you because of MS and tapering. I don't have any great ideas for you, I hope that those around you and the people involved with your mom's care understand your health issues. Just know that you are doing the best you can.  Can you have a Zoom or Facetime visit with your mom?

pianogirl 

[[je...]]

I am deeply sorry for everything you're going through. It sounds to me you're looking for someone to say it's okay if you cannot go. You are not selfish if your health does not permit it. You don't have to justify your actions to anyone. If people want to judge then so be it. I've learned they're going to judge anyway. 

Why would you want to put your health at risk and go through suffering just to please others? It sounds like you've done everything possible to help your mom. I'm sure she's grateful for that. I'm a mother too and I know I would not want my child to put herself through suffering to say goodbye in person. As a mother I always put my child's needs above my own.

It will be sad not to see her a last time but I'm sure you have lots of memories to remember her by. Is there something special you can arrange for her? If she likes music maybe get someone to go and play violin for her. Or arrange for a person to take a personalised care package for her with a handwritten note from you. You can record a special video where you talk through old photos and special times. It's the thought that counts.

I can see how much you care about your mom.

[[Re...]]

Thank you so much for your wisdom and support, pianogirl and jelly baby. Your words are a balm. 

[[Ma...]]

If it was me, I would do it, I would go. 
But that doesn’t mean that it’s not okay to not go.

and for me it’s also a horrorhell on earth to leave my house cause of neuro issues , and every kind of stimulation sets me back to horrorhell 2.0

just do what you think you need to do. 

you know best. 💖