Going out of my head

Over the last 3 years of dealing with necrotizing autoimmune myopathy (NAM) I have really tried to get better at asking for help. It's still hard.2 min


24
Share via
3 comments, 24 points

I know that I am not the only one that is going through this but at times it sure seems like it. I spend my days at home unless I have a doctor’s appointment or aquatic therapy. I try to stay positive but seeing everyone in my house being able to get in the car and go, gets to me sometimes. I know I could go with them at times but it is such a hassle to get my wheelchair in and out of the trunk of the car. I try to keep myself busy but you can only watch so many movies and do so many word search puzzles. It makes me go crazy and I try not to show it.

I have been told that hiding my feelings is not good for me but I don’t like to see the stress and concern on the faces of my family and friends if I tell them. I have always been the type of person that is willing to help other people but I really don’t like to ask for help.

Over the last 3 years of dealing with my necrotizing autoimmune myopathy (NAM) I have really tried to get better at asking for help. It’s still hard. Believe me, I am happy that I have great support from my family and friends but a lot of them don’t really know what I am going through on a daily basis. Of course, when asked how I am doing my normal answer is I’m doing okay. Even when I am not. I really hate being in pain as much as I am. I hate not being able to do the things with my kids and family as I used to. I see the frustration on their faces all the time. Especially my son who is 14. I used to be an assistant coach for his youth baseball team and now I am unable to and now he doesn’t want to play. We use to shoot hoops in the backyard and now it is hard for me to get back there. I see how it has affected him and it hurts. We are trying to do other things but it is still frustrating.

MSU, IndeeLift program, greater independence for myositis patients

I hate not being able to do the things with my kids and family as I used to. I see the frustration on their faces all the time.

I have been so even-keeled most of my life and since the NAM started, I have anxiety and depression. I hate freaking out over the littlest things now. I hate all the things that run through my head sometimes like I am a failure and I hate not being able to take care of my family. I know that it’s not my fault and there was nothing I could do to avoid my NAM, but it’s still frustrating.

I am NOT GOING TO GIVE UP. But it still makes me go out of my head sometimes.


Learn more about the rare muscle disease, immune-mediated necrotizing myopathy (IMNM), also referred to necrotizing autoimmune myopathy (NAM) on MSU’s comprehensive myositis website, Understandingmyositis.org/imnm 


Like it? Share with your friends!

24
Share via
3 comments, 24 points

What's Your Reaction?

I Care I Care
14
I Care
Like Like
10
Like
Empowering Empowering
2
Empowering
Funny Funny
0
Funny
Jason Hopfauf

I have necrotizing autoimmune myopathy (NAM). I am a volunteer with Myositis Support and Understanding (MSU) and invite you to join us for our various monthly live video support sessions.

3 Comments

  1. I’m in tears reading this, especially about the kids, and not being able to be the parent you were (and liked!) before this disease so rudely took hold. I know you’ll not give up and I know you know you’re not a failure but yes those feelings still come on and having this forum and others from MSU are so helpful in letting us just express it! You’re not alone Jason.

Comments

comments

Choose A Format
Story
Formatted Text with Embeds and Visuals
Video
Youtube, Vimeo or Vine Embeds
Meme
Upload your own images to make custom memes
Image
Photo or GIF
Send this to a friend