Struggling to Live with MS: My Story

Hi KitKat, great name. You're done a good thing- you gave this app a shot. PPL here care. Give yourself a break from worry, take a deep breath and relax. Things may get foggy at times. Bring it here so you don’t keep it bottled up there.

So sorry. MS is exhausting. Meditation might help bring you some calm, there’s lots of apps that can help

Hi. Living with a chronic illness is hard. I’ve been living with MS for 4 years now but I’ve had CFS/ME for many many years. I feel like it’s a constant mental / emotional practice to notice the good things in one’s life and take risks and not be defined by the illness present in our lives. I actually just did a meditation on the Calm app about noticing and lingering on simple pleasures. Fear will grow as big as we let it so better to fill the space with noticing the blessings :)

Good morning. I hope everyone is doing well. I am trying to get my house picked up myself.

KitKat—I meant to say also. Where do you begin? You begin with today.

Jody and KitKat—I know how y’all feel. I will forget someone’s name and decide it’s the MS messing me up. If I’m not careful I can make every little thing into part of my MS. The mind over matter thing helps, but it’s a battle to enjoy my life as it is and not be anxious about tomorrow. When I go to my MS doc, there are a ton of people with wheelchairs and walkers in the waiting room it scares me. When I get in a worry loop, I start my “self-talk” (not out loud because I don’t want people to think I’m crazy) and in my mind I tell myself this- “You have today. Enjoy it. Celebrate it with the people you love. You don’t know what tomorrow will bring but you do know you have today—so live it. How much worse will it be if down the road your symptoms get worse. You’ll regret that you didn’t get the most out of today”

Exactly!! I’m a big “mind over matter” type person. I put up a mental block for things I don’t want to think about I think it’s a defensive thing to keep my anxiety down but MS keeps sneaking back up on me. Now I think I have a bit of a drop foot thing going on on my right side. 😣 I’m just feeling bad for myself I guess. Thx for talking Jody!😊

Good morning At first I did not worry about it but now I do cause I keep having little things happen to me and frankly it scares me ughhh