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.
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
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.
@seatlsonic Thanks for sharing how difficult it is when it takes away from time spent with family.
Thank you Linda. It has been hard but I am glad that I found this group. It has helped alot and given me an outlet.