Of All the Things MS Has Robbed Me of, This Is the Most Important One of All

By kimberlybthatsme

2 min read

I recently got a call from my son asking if I could come down to Florida and help with my granddaughter for a few days due to him having to go out of town for a work conference, and of course I said yes right away! Why? Because that's what grandma's do.

His grandmother (my mom) always watched him when I needed her, and being a single parent I needed her a lot. She would always do fun and exciting things with him. They would go everywhere together, shopping, movies, out to eat, visiting friends, school functions, to the beach. My mom has always been a go, go, go person. Those are memories he will have the rest of his life.

My experience

For me, I was robbed of being that kind of grandparent, the kind that could do all of those things with their grandchild.

I was already (newly) diagnosed and not working when I got the news of being a grandmother so I was excited and thought of all the stuff I would do with her just like my mom did with my son. I still was in denial of what I could and couldn't do.

She is now 5 and with each passing year reality slaps me in the face harder and harder!

I'm having trouble keeping up

MS robbed me of being able to do all those awesome things my mom did with my son. Even small things like taking her to the store is mentally and physically draining on me. She loves to play pretend with her dolls, barbies and stuffies and it takes all I have to keep up with her. The old me would have ran her ragged but the new me can't even keep up with her on FaceTime!

Of all the things MS has robbed me of, this is the most important one of all...being a grandparent that is able to do all of the fun things grandparents do with their grandkids.

I cherish the times I have the energy

I do cherish every moment with her and of course I still try to keep up with her but her parents have told her that I am fragile and that I can't do a lot which makes her sad some times, BUT the times that I have the energy to take her to the park or to her favorite store or play pretend with her I will always cherish.

MS may have robbed me of being a go, go, go grandparent but it will never rob me of BEING a grandparent.

I know our lives with MS are very different from what they use to be, I'm sure everyone of you can attest to that. These days I am learning to live with the "new" me and do what I can when I can and when I can't, well, I still try when it comes to her.

Looking forward, this is my goal

My goal this year is to embrace the new me and let the old me go...because the new me has some great stuff to offer, just in a different way.

What is the most important thing in your life that MS has robbed you of?

Thanks for stopping by and taking the time to read my story. I wish you all a great new you!

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Frogger32091 Member
Not the same thing, but MS took Kayaking away from me. I am newly diagnosed so I am sure there is more to lose in the future, but for now it took summer and kayaking and sleep. I used to love summer but now I cannot stand the heat. I love to swim and kayak, but now I can hardly sit in my Kayak for long periods of time, and I can be in the water but not really swim. I also do not sleep much. I am not able to keep my house as clean as I want to, and I always feel guilty when my husband is cleaning, and I am just sitting in my chair. I have 4 grandchildren, but I rarely see them because they live 900 miles away. But I feel bad for you because I know what it feels like to compare yourself to your mother. I was raised by my grandmother who was an amazing strong woman that did not let any of her health issues slow her down, not one day. My mother on the other hand can't even get a slight cold without being in bed for 3 days. I never wanted to be like my mother. I wanted to be strong like my grandmother, but I feel like I am failing. I am having a very hard time coming to terms with my diagnosis because some days I feel fine. Other days I do not know I even get out of bed. I am still able to work for now, but I know one day soon that will end. I am not sure what I will do when that day comes. My thoughts are with you. Hopefully you have more strong days than not and can spend all that amazing time with your granddaughter. 
1. kimberlybthatsme Member
 <inline-mention username="Frogger32091" user-id="6761955"/> it is the same, anything MS takes from us is horrible. I live 6 hours from my granddaughter which in my mind is a curse and a blessing. She doesn't get to see me on my worse days. I do get down to Fl to see her as much as I can but not enough. I can fake it until I can't with her but at 5, she is ok to chill some times and snuggle and watch some TV (not that I want her in front of that but do what we have to). I use to LOVE kyaking in the Springs in Crystal River it was my happy place for sure! Now I can't and when we go to visit I'm always sad. LOL, my hard head swears I can, so I get in, paddle 5 minutes and then tears start streaming down my face bc I know I can't go any further BUT being on the water even for 5 min is magical so I will take it! I'm sorry you don't get to so your grands, and I get feeling guilty about the hubs cleaning and you unable to...I get upset when my hubs does the dishes and he just says, I got it go rest. I guess we are blessed like that 😉 I will say, when I did stop working (I went form 100 to zero over night) it took me 7 years to come to terms with it. I was a go getter and LOVED to work, so just some advice...don't try to face that on our own. If you can find a counselor that understands that seek them out. I went very dark for a few years and didn't think I would make it some days. We moved to another state due to my husband's work/family and well you know how in-laws are, it never worked out with me and my mother in law. My brother in law passed and that was def hard to deal with which exacerbated my MS and since I don't work I had zero friends here and I really still don't (so I am very grateful for forums like this one). LOL, even if I did have friends I hurt so bad I would cancel 80% of the time I'm sure and who wants a friend like that! Hang in there my dear, some days are much better than others and the ones that are bad, we just have to remind ourselves that this to shall pass (even if it's for a short amount of time). I think I've finally like the new me but that is ever changing these days so I better start liking all of me 😉 BIG ((HUGS)) to you!
2. Lori Foster Member
 Wow. That is some awesome advice and support <inline-mention username="kimberlybthatsme" user-id="3958502"/> gave you, <inline-mention username="Frogger32091" user-id="6761955"/>. Losing something you are passionate about is devasting. It's only natural to mourn it. Lots and lots of people who have chronic diseases see therapists to help them deal with the uncertainty and change. Stress can make your symptoms worse, so it only makes sense to do everything you can to alleviate that stress. It might be worth a try. I know lots of people like your grandmother who push through their pain. The difference is that they are often pushing only through pain. They are not pushing through overwhelming fatigue and cognitive fog and, often, they recover quickly no matter how hard they work. You will not recover quickly if you push yourself too hard. Overdoing it might even push you into a relapse. As hard as it is, you cannot compare yourself to your grandmother. The situation is not the same. There might come a time when you have to stop working. If that time comes, you can apply for disability. It doesn't pay much, but it is something. Keep in mind that the there is a positive trade off. Without the stress and strict schedule of work, you might see improvement in your symptoms. It's never easy. Work is such a huge part of our identities in our culture. But I hope that you adjust well with the support of people like <inline-mention username="kimberlybthatsme" user-id="3958502"/>. I am glad you found this community. We are here for you whenever you need us. Best wishes. - Lori (Team Member)