First, we cry, usually a lot. Then, we have to figure out what has to be done that day. If it's just laundry, we can get the clothes into the washer and dryer. Major problems if there has to be ironing done. That is quite a struggle even wearing a back brace, very tiring, and takes a very long time. If we have appointments, then we call the taxi company and tell them that I will require assistance from the driver both trying to get over the curb and also when we are at the, say dentist's office, getting out of the cab. I struggle when I'm in their office and usually people assist me. Then, back home again, I did little things until my husband comes home, takes a nap, and makes us dinner. I usually try to do the dishes and clean up after him. And, I can't stay up late and go to bed early.
Hello😀 i am new here. First going through tests. I have jsd many symptoms for about 3 or 4 yrs. First started with pain in my leg(more like calf and foot.) Especially during menstrual cycle. As the yrs went by symptoms got worse. Leg weakness went all the way up the leg now, got numerous mri's the most recent one 2 yrs ago it showed tiny lesion on frontal lobe. My neurologist said to leave it alone. Every few months as symptoms kept getting worse i asked doc if i should take another one. He said no. 2 yrs later as i mentioned. Leg weakness is all the way up my leg. I can lift it when sitting and lying down. I miss steps sometimes and walkinv up stairs gets me winded. Anybody else experience more pain during periods?
I am a huge believer in listening to my body. If I am tired I rest and if I have an appointment I try my best to get there, but if it is really bad I reschedule. I am very fortunate that I have relapsing remitting ms and am not experiencing the crippling affects so many people have. Pain is my biggest obstacle and I hate to have to depend on pain medications, but sometimes I must. I am constantly trying to rub away the pain. I get funny looks from people in stores when I am rubbing my butt or legs without a thought of how it looks. You have to laugh at yourself on occasion.
The tougher days are usually met with a deep breath & an understanding that it's to be expected. It's usually best to have a Plan B & C when it comes to MS.
I do what I can. I used to be a fanatic about cleaning, dusting, vacuuming, everything had to be in it's place, exactly in it's place. Now, I just don't care anymore. Some days I care, most days I don't. Much of that has to do with depression. And a lot has to do with pain and terrible fatigue. Not sure which is worse. There are some things that really must get done, the basics, dishes, the wash, and I push myself to do as much as I can in a day. I take naps when I am tired. And now I stay and bed and rest when I haven't slept too well. I used to think it was terrible to stay in bed after a certain time of the morning....that ship has sailed too. I just don't care anymore.
I...am more important than a few dishes waiting to be washed or a basket of laundry or anyone's else's opinion of what I should and shouldn't do.
I work at my computer, getting up every 15 minutes or so to do a chore-then back to the computer. If I am extremely fatigued, I do what I can -when I can and- tell myself "Good Job !"
I live basically alone, so, I don't have to worry about major meal prep!
I met a man the other day who said his mantra is "I LOVE ME "- Came home and heard it on Alexa-karma ! It's also a good mantra-You don't have to Love MS-who does-but-it is a part of us, and, barring a miracle cure, will be with us forever. Best advice I have ever had was "take Care Of Yourself-" or - in other words "I LOVE ME ".