Kelly McNamara
Share what a day in your life living with MS is like!
caninemom6142 Member
My day starts off with, when I get up.
Sounds a little silly but to me it's a reflection of how I feel about life now.
I used to get up at the crack of dawn for decades.
I worked, I exercised, I enjoyed life with various activities.
Now, my life has changed a lot. Pain and terrible fatigue make a huge difference. Along with ulcers, IBS, diverticulosis, lack of sleep, etc...the list goes on.
Now, if I get enough sleep, I get up early and sometimes can get a few things that need doing, done.
If I haven't slept well, if I am sick and in a lot of pain, I point the remote at the tv and I stay in bed and rest, doze, read, sleep.
I don't care about chores, they'll still be waiting in a day or two or three...I'm not a fanatic about cleaning anymore.
I don't care if things are not in place and looking neat.
I sometimes don't leave my house for a week or more, I only go out now when it's absolutely necessary, to the grocery store, library, appointment, etc.
I rarely smile anymore, I'm not what anyone would describe as a happy person.
This is what 35 years of MS has done to my life.
stumblingbumbling Member
my day starts with a gut wrenching hug, before i even open my eyes.the Next quest is making it to the bathroom on my wobbly legs w/o an accident. so far so good (usually). now to the coffee pot, pour a cup and hope i can walk steady enough to enjoy the entire cup and not have to clean a trail of brown drips. Still not frustrated for this is routine and I know whats to be expected. now that I'm feeling pretty ambitious I make a goal on a worthwhile task, you know laundry, dishes etc. On a really good day I'll plan a trip to the store, sit in the car and look into the entrance until a electric cart becomes available,hopeful that the battery is good. With all good intentions stating to fade its time to consider a nap and then I'll feel like doing more. wishful thinking that is. That sums up a typical day, so much to do so little ability.
MichelleSuhar Member
vikkr Member
Wow, this all sounds so familiar! I find that breaking tasks up helps, and not trying to do too them all at once, and not all in one day. I make a list (well many to be honest) and list say five or six things I would “like to do”, then I’ll pick my top three, I call them the “absolutes”, meaning no matter what, this or that must be done, for example a doctor appointment, or grocery shopping. Whenever I can have any control whatsoever over appointments or tasks I spread them out, and never back to back or if possible, not in the same week. I am always writing notes, using Alexa, a write on wipe off board, or my phone iPad, etc. to help me list things, and I’m constantly revising them. I am learning that who I was before is not who I am now, and it is difficult to accept, but I’m learning to deal with it. I wish you all the bets.
MichelleSuhar Member
Erin Rush Community Admin
Thanks so much for sharing!
Best, Erin, Team Member.
rogerwil Member
My day starts with me waking up at 1 or 2 in the morning everyday, not that I want to but I am awake at that time. I go out to get my newspaper at 3:30, go out using my cane to keep my balance then make my coffee, look at the newspaper and turn on the tv. Some times I can go back to sleep for an hour or so but I can't go out to do anything if it is hot out so I try to do things around the house. At around noon I am completely exhausted so I try to take a nap to recharge my body for the rest of the day then go to bed at 10 at night. I never know how I will feel during the day as it changes all of the time.
Doreen H Community Admin
Thanks so much for sharing a bit of your daily routine.
As you mentioned, MS is so unpredictable it's tough to plan out your day not knowing what's in store each upcoming day. However, getting up between 1-2am, I would definitely have naps scheduled throughout my day.
Be well, Doreen (Team Member)