Positive acceptance of this monster
First time posting but have been reading the forums for a while now, so here goes. I was diagnosed in 2015 and it didnt really register and properly kick in until some years later - just after the Covid years i believe and the fact me, a fit go getting male suddenly became overwhelmed with this thing i have and the negativity affecting everyday life. Now 53, the main issue for myself is not the endless fatigue, pain, blood tests, tablet taking, tremors, eyesight and all the other lovely treats but it is the acceptance of not being able to do what i once took for granted. Changing a plug, creating gastronmic feasts, playing with my kids, grandkids, no more running anywhere, planning every trip (just in case) and ultimately giving up my passion of playing drums in a band due to not being able to hold the drumsticks tightly enough, the co ordination and balance needed has gone along with my motivation - the fatigue and downsides are overtaking the upsides. Is it just me or am i less of a man, as i cannot do what i use to do - work, home, leisure - the mental side of not being able to do things is taking over. I have a wonderful supportive wife and family but they have seen the old Jon fade away and be replaced by a Jon that needs to replace his smile and get back on track. I wonder if any of you have felt/experienced the same sort of thing? (asking for a friend) - stay safe all and keep smiling
We're so glad you've shared your experience with MS here. It’s one thing to read others' comments, but expressing yourself in this space fosters deeper understanding and compassion and you deserve that in your journey. It’s completely normal to feel overwhelmed by the changes MS has brought to your life, especially as someone who was once so active. The emotional toll can be just as heavy as the physical limitations. Losing parts of yourself, like your passion for music or the ability to engage in family activities, is incredibly difficult. You’re not alone in this—many of us have faced similar struggles with acceptance and the mental side of living with MS. Feeling this way doesn’t make you any less of a man; it shows how much you care about what brings you joy. It’s great that you have a supportive family, but it’s also important to acknowledge your feelings. Replacing that smile takes time, and it’s okay to grieve the things you miss.
I want to share two articles that may help you navigate these emotions: Hope versus Acceptance- https://multiplesclerosis.net/living-with-ms/hope-versus-acceptance and Accepting Truth- https://multiplesclerosis.net/living-with-ms/accepting-truth.
I hope you find new ways to connect with your passions, even if they look different now. No matter what, you are and forever will be Jon. MS may have changed you on the outside, but you are still you on the inside. Take care of yourself, and keep reaching out—sharing your journey is a step toward healing. Wishing you all the best,
Latoya (Team Member)
- I'm so glad that you've shared your story. You are not alone. I can relate to your loss of musical performance. My 1st big MS attack took away vision in one eye for 3 months during the busiest performance season. I'm a classically trained french horn player and pianist. My 2nd big MS attack took away my ability to use my left hand. I really noticed it DURING a performance when it felt like my fingers weren't hitting the piano keys at all. It took a long time before things returned to as close to normal as possible. I don't play like I used to and in a freelance work, that means your name gets dropped off gig lists. Just know that there are people here who not only understand the understandable/invisible parts of MS, but the hard to understand emotions related to not being able to do things that truly defined you at some point. Thank you for sharing and wishing you the best, Lisa Jon, I see you and I hear you. I'm still processing your story, and will follow up once I have. But I just wanted to say that you are amazing. For hanging in there and for giving your truth. I'm sorry that you are dealing with the loss of things that you loved. So tonight I'm sending you my support. 💜💜 Jon, I have read your post several times now, wrapping my mind around your message. And every time I read it, what shines through to me, despite the sad, is a quirky sense of humor. I can picture in my mind, filling in with a generic rugged semi-outdoorsy type face, this story being told, around a bonfire on an autumn evening, with a half smile on the face and a touch of laughter in the voice.
I'm so sorry that you are struggling with feeling that you are fading away. I have felt similar emotions at several different points in my life. When I had to give up traveling to be with my family. When I had to give up hiking and walking on the beach thanks to the lack of balance and coordination now. The devastation I felt in my soul when I asked my husband what he wanted to do for his birthday and he answered that he wanted to hike Mt Tabor. Then the full realization of his ask hit him and his face just...fell. I rallied for him that day, and with a lot of effort made it through (of course the rebound was awful).
Despite the negative, I still see something shining through in you that tells me you're far from finished. You may not be able to do the actions that you want to anymore, but your heart and soul are there, and that's the most important part! You're not less of a man, or less of a person.
Take the time to grieve the losses, we all need to give ourselves that space. And then find something to look forward to tomorrow.
We're here for you! 💜💜
thank you so much for taking the time to share such a heartfelt and deeply inspiring message. It's so true, we need to give ourselves permission to grieve the losses that come with this diagnosis, while also recognizing that we are not in any way "less than" now. We are still as valuable as we were prior to a diagnosis and will remain valuable. Thanks for this beautiful reminder.
Best
Alene (team member)
