How are you doing? Really?
I have an amazing person in my life, she's my mini-me. We share the same name (Christina) and were both born at the same hospital completely across the country five years apart. We end up working at the same company 30 years later. She's become my soul sister.
All of this is to preface my experience. When I first started experiencing my disequilibrium, I was speaking with her and stumbled while standing still. And she was so concerned, I opened up to her and told her the entire story and that I was going for testing for MS. And her mom, who lives with her has MS, so she is familiar.
Now, when she sees me, she'll ask how I am. And I always say that I'm fine, or living large, or loving life. And she stops me (gently) and asks 'but how are you really '. And that single move, that moment of genuine concern, is an entire universe of emotion.
And today, I am so grateful for it and wanted to share. Then ask all of you - how are you doing today, for real? It's important to feel heard and be acknowledged through it all.
Much love and support 💜💜💜
this is such a beautiful story! Thanks for taking the time to share it. I love the people in our life who can look us in the eyes and ask for an honest response to this question. It speaks right to the heart. I'm looking forward to hearing everyone's responses. It's always great to hear from each of our fellow community members as they each help to tell the story of the the bigger picture living with MS.
I am happy to say that today, I am doing well. I had a tough summer with this heat, but I am feeling so much better with the cooler temps. I'm also starting to incorporate some more exercise back into my routine, and that's something that I've missed for a while now.
Best
Alene, Moderator
Do you have a physical therapist? They can recommend safe exercises. Also, the website and YouTube Channel, CAN-DO MS, have videos and classes specifically for people with MS. I don't have a PT yet, another thing that's just hung up with the hoops to jump through in the medical community. I've been planning on checking out the YouTube, but haven't gotten around to it yet. Currently am fighting the exhaustion pretty hard, and still navigating what parts of my body are affected and how with the spasticity. 💜💜
What a heartfelt story! It’s incredible how a connection like that can make such a difference. It sounds like Christina’s empathy and understanding really shines through, especially given her own family’s experience. It’s rare to have someone who genuinely checks in and sees beyond the surface. We all need a Christina!
But I'm doing okay. My mind races a lot and I always feel like I need to do something or I'll feel behind. But I'm learning to stop and rest whenever my body tells me, the first time. I hope to get back to working out soon as that always makes me feel better. Thanks so much for asking and encouraging us all to express our true feelings. Wishing you all the best, Latoya (Team Member)I always love seeing your responses! And I agree, everyone needs at least one Christina! I'm grateful that, on the bad days, I can open up and tell her... and she doesn't try to fix it. She understands that a lot of times there really aren't any fixes. So she just listens, suggests something if appropriate, and tells me she loves me. Then we move on. And she has the same in me. She talks to me about her Mom and about the things she is going through as a caregiver to a long time warrior, while being a mother of two and amazing at work.
I can relate to the mind racing, that is something I've always experienced but now is not the strength that it once was for me. I seem to find myself caught in circling thoughts... like obsessing over a task at hand, forgetting that I've already figured it out, and going back to it. Does that happen for you?
I'm so happy that you are learning a better language with your body, and giving yourself the grace to stop when you need to. I hope that you are able to safely incorporate exercise back into your life. I'm sending you my strength and support! Thank you for sharing, and I am wishing you all the best! 💜💜
Ucky! I confided in a friend that I'm being beset with dark thoughts. I even expressed some to my husband and regret dumping heavy emotions on him because I already do it too often. A lot of times, people want to talk you out of what they call, "negative emotions" which I now call "challenging emotions." I encourage them own the feeling and even sit with it. But I can't continue to sit with this one.
To take reclaim my mental health, I'm going to tackle it from different directions: get outside more, especially during the week; pray, read my Bible, and listen to gospel music more; go to online MS support groups; reach out to warmlines; and get back into therapy. Last night, I laid down and listened to soothing music. I hadn't done that in a while because my husband can't sleep with noise. As far as support, I realize I don't want to continuing dumping emotional stuff to loved ones, but I do need somewhere else to process it. When it comes to loved ones, I call it, "doing the M.O.S.T." Moratorium on Symptom Talk.it sounds like you have some good actions to take to help you process your emotions. I applaud that. And it sounds like getting back into therapy will be a good thing, a safe place to honestly state your emotions and feelings without feeling like you're burdening the people you love.
That said, I encourage you to speak your truth when you need to. Don't hide it from your loved ones. You don't have to tell all, but you can say that you need some time to heal. Find a way to communicate when you're not at your best so they can give you the space you need to work through it.
Wishing you all the best 💜💜
