What is your day like?

[Corran731]

So I’m curious. How much does the severity of your MS symptoms vary throughout the day? I can start the day able to shower and get dressed etc. on my own (although not every day) to not being able to stand up and transfer to my wheelchair, pull up pants without help or even use a fork to eat. Do any of you see this drastic change throughout your day?

[falalalala]

Mornings for me are best for getting things done-not that I'm doing that lately but after all, it's the thought that counts.😅

[Sweetheartonvdayl in reply to falalalala]

For me too…- it’s the thought that counts 😂

[lbenmaor]

Late mornings are good for me.

[greaterexp]

That's one of the frustrating things about MS. It surely makes it hard to explain to others why I can manage something one day, but not the next. I try to look at it as a blessing; if I can't do something one day, I'll probably be able the next.

[Xvettech]

YES!

[Kit10]

Yes.

Early morning - worst

After breakfast - improves

Late morning -best

Afternoon/evening - degenerates with tiredness

[Sweetheartonvdayl in reply to Kit10]

You said it- degenerates as the day goes on. For me it’s about 4-5 hrs upon rising.

[Helpmeup]

Yes! I start out each day with shaky legs and zero energy. My mornings are very slow going. It takes me about two hours after I get out of bed to have the energy to get dressed. Dressing wears me out and I have to rest a while. I start regaining strength by mid-afternoon. By late afternoon, I am getting around and can do house chores. Evenings are when I have the most energy to clean, do laundry, etc. I still have to shower at night because that really tires me out, and I can't shower every night because it just takes too much out of me. But, yes, there's a drastic difference in my energy and ability level throughout the day and evening. 🙂

[Greentime in reply to Helpmeup]

This is interesting, your energy is the opposite of many others! This MS thing can be radically different for each of us!

[Helpmeup in reply to Greentime]

It really is interesting. I am good for nothing in the morning, and my evenings are my time to get things done. Seems like many have their best time in the morning, but I am not one of them. 🙂

[ScaredyCat43 in reply to Helpmeup]

What you’ve described is exactly how I am too. Apart from a very occasional day, I always have more energy and slightly better ability later in the day and into the evening. The mornings feel like I’m back at square one. Every single day. That, in itself, is exhausting.

[NorasMom]

I take my time when I get up, not attempting to get dressed until I've been awake for at least 2 hours. Around lunchtime is my only active period, followed by sluggishness in the afternoon, then I do my best to relax all evening.

[Corran731 in reply to NorasMom]

That’s interesting. If I don’t get dressed first thing in the morning, especially if I have showered, I can’t do it myself and need help. I also have to resist the urge to sleep in because that extra bit of sleep makes my spasticity worse.

[NorasMom in reply to Corran731]

I definitely have problems if I stay in bed too long, and most of my nights are actually broken down into 2-4 hours of sleep with me sitting up for an hour or so in between.

[Corran731 in reply to NorasMom]

I relate. Sometimes I fall back asleep faster than others but my sleep is broken down into 2-4 hour sessions as well. What is really annoying is no matter when I go to sleep or how early I stop drinking water I always wake up between 12-1 am and need to go to the bathroom.

[Biggums]

Greetings Corran731. Typically there are good days and bad days. Some days you can just about forget you're ill. Other days it's hard to remember you weren't like this all the time. The best thing to do is not panic. Try to stay calm. Call for help if possible. Wait for the swing to pass. Keep working to finish your task . Some days I can stand easily and others I need help. Do what you can when you can.

[Greentime in reply to Biggums]

What great advice! 😊

[Robsmom]

Mornings are best for me too. I used to wear myself out, but then I heard about the spoon theory and I've learned to try to regulate my day. Still, by evening I'm done.

[Kit10 in reply to Robsmom]

The spoon theory ?🤔 Please explain.

[Corran731 in reply to Kit10]

This article is a good explanation

washingtonpost.com/wellness...

[Robsmom in reply to Kit10]

Yes, that article explains it well.

[whwiechm]

Not quite as drastic, but definitely noticeable for me.

[CatsandCars]

I wake up feeling horrible, bleary-eyed, and mentally slow. If you ask anything of me during this time, I will probably get irritable with you, then feel bad about it. I spend hours feeling more or less like I just woke up. As the afternoon goes on, I feel a bit better, but not great. I am more likely to do a few useful things between this time and dinner.. I feel more awake in the mid/late afternoon/evening, but by then my brain is really tired and I have trouble forming full sentences and start getting my words mixed up here and there, although if I'm watching something good on TV I can feel quite mentally stimulated.

My physical abilities don't change that much throughout the day, though, except for maybe balance and coordination in the morning and at night when I'm very tired.

[Corran731 in reply to CatsandCars]

You hit on something that I think a lot of people outside of our community don’t understand, the difference between mental and physical fatigue. Mine are clearly separate yet do affect each other. I can be able to do things physically but not able to concentrate from mental fatigue and vice versa. Early in my diagnosis years ago I began to recognize this when I was working on a project that required lots of mental focus and when I was finished had trouble walking. Despite having done little physically I still felt like I had just returned from a jog around the block 😂

[CatsandCars in reply to Corran731]

I haven't really thought about it that way, but I see your point. My physical fatigue stays pretty consistent, probably because I don't do very much physically. But when I overdo it, I really feel it.

It's very interesting (but really unfair) that a project that requires a lot of concentration can affect your legs. I always feel exhausted after working on our taxes, which I've always attributed to having to sit up for so long, but maybe the concentration has something to do with it.

[Helpmeup in reply to Corran731]

I really understand about the mental fatigue. When my brain decides it's had enough, I really struggle to find even simple words, and sometimes, while reading posts here, I want to respond, but just can't muster enough brain cells to type what I want to say. It is mentally challenging and physically exhausting. 😵‍💫

[Helpmeup in reply to CatsandCars]

Your mornings sound like mine! It takes me a few hours to shake off the weakness and brain fog. After about two hours and two cups of coffee, I can finally get dressed. Everyone in my life knows not to call me before 2 or 3 in the afternoon, and I have to schedule any doctor appts late in the day, preferably after 3 or 4 pm.

It's also sad that I know people who think I'm just lazy, sleeping in, getting a late start, etc. I have given up trying to explain myself to people who just don't get it and never will. 😖

[CatsandCars in reply to Helpmeup]

Yep, that sounds familiar! Minus the coffee, unfortunately, because I can't take the acid or the caffeine anymore. 😢 I try to get my doctors appointments in the afternoon too. When I have to go in the morning for some reason, I feel like I'm being punished!

I'm fortunate that my friends and family seem to have accepted the way I am. People outside my family may have thought I was lazy, but thankfully nobody has said it to my face. I do tend to slink out to the mailbox when I don't see my neighbor out there, because I'm usually dressed "comfortably", have no makeup on, and am covered with cat hair. So I can't say that I don't care what people think, but I do think we need to consider the source. People who don't get it seem to be lacking in empathy, to say the least.

I get you, my friend! 😁

[Helpmeup in reply to CatsandCars]

I unexpectedly ran into a neighbor yesterday while getting my mail, and she started to pick the dog hair off my t-shirt 😂😂😂🐾🐾🐶

[CatsandCars in reply to Helpmeup]

That would be helpful. Or possibly futile, in my case! 😂😂😂

[sashaming1]

Mine are consistent throughout the day - unless I am affected by my temperature.

[carolek572 CommunityAmbassador]

Like many in this forum, I have my good and not so good days, Corran731 ! My to do list always remains the same, but every once in a while, I cross something off of it. Mornings are the best time for me to get things done. If I cannot start something before noon, then it will not get done. There’s always tomorrow… Keep Smiling

[Cutefreckles72]

Hi Corran731, I understand exactly. I have PPMS and everyday it kills my legs. My brain can tell my legs to move but my legs don't listen anymore. It can be a struggle all day and at night. Going to the bathroom, putting on pants and taking a bath its hard now. What I used to do 5 years ago was so easy but now it's painful. But I thank God I can move a little. Hang in there and keep moving. 👍👩‍🦽

[Irishgirl76]

Hi Corran, I’m glad you asked that question. I have family near but live in skilled nursing facility. I didn’t say home because am working on,just like you transfer independently. You got this man! I have a bar on side and I get up much for incontinence. I am here 3 years and need possibly a smaller space. Quality of Care is so important. I finally can do so much but I get frustrated. I get dressed and then want to cry as it should not be this difficult 😥. Then as I watch u-tube on personal care in a wheel chair I smile, put music and dance with exercise. Next day I have fatigue and don’t do my daily checklist. I start with meditation daily and some days are super but I cry as I look around me and the elderly. I am65 so many say you need more as I am verbal . We all have a deep sense of moving and finding a sense of balance. I guess this a lifetime experience.

Each day has a purpose. Find joy and happiness even when you can’t see yourself improving each day * physically and emotionally. Now pull those pants up and 🤣.

[Mollyabigail]

What is your day like? Hmm, good question. Now that I think about it, I move slowly in the early morning. Then, things improve until about 6 pm, or until I try to accomplish a lot of things. Then, it goes south fast! By 9 pm, I am saying un-churched words & daring anyone to get between me & my bed.

[agate]

My typical day has to be pretty much the same routine every day, no exceptions. You might say I'm set in my ways, but it's what works best for me. I live alone and so my time is usually something I can arrange any way I want, which is a HUGE advantage.

I wake up around 7 or 7:30 each morning (no alarm please--too shattering noise coming at me first thing in the day), doing a few exercises, and getting dressed, starting the desktop PC, making the bed, and getting and eating breakfast usually takes at least 2 hours. Sometimes I'm in the bathroom many times during this time but it's been this way for years.

Then I can do laundry (2 or 3 mornings a week), ironing, housework (vacuuming, floor-mopping, bathroom cleaning) or tend to correspondence and finances, usually using the computer. If there is time, I putter with a few plants (houseplants and patio plants).

I'm in the wheelchair for all sitting, and I'm sitting most of the time.

Sometime between 12:30 and 2 I fix lunch (a cup of yogurt, maybe with berries, and a few Triscuits), and I probably bundle up the trash and take it outside of this building to hoist it into the dumpsters.

Then it's naptime. Have to take off the glasses and the hearing aids and stretch out, elevating my feet as I've been told to do by a physical therapist to cut down on leg swelling. I also do 10 stretching exercises at the time. I almost always sleep for nearly an hour, sometimes longer.

I wake up with a second wind to see me through the evening. At about 5 I start fixing dinner, which is always very simple these days (slice of frozen pizza heated up, a vegetable, V8 juice). I wash the dinner dishes and if I don't have to wash my hair (once a week) or change bed linens or do some other short job, I get to have the evening free. I sit and watch an hour of news on TV, then move on to rented movies on DVDs that I get from the library, and while sitting there I crochet hats that go to homeless people.

By 9:30 it's time to pack up and start moving toward bedtime. I make the rounds of the first floor of this building with my rollator, checking on some situations that some of the residents here like to check on since there is no staff person here in the evenings or on weekends. Some of us check up on whether the windows and doors aren't left open and whether there is enough paper for the printer and the two public restrooms. Also we check on whether any overripe food has been left out.

Once a week I spend about half an hour setting up pills for the week. I have a humidifier that needs cleaning once a week and several other maintenance jobs I have to keep remembering to do.

I'm usually asleep around midnight, after doing more exercises and unwinding for a while at the computer, tending to e-mail, etc. I do almost all of my shopping online and haven't been in a bricks-and-mortar store for several years now.

That is how things go, and with such a quiet life I'm able to focus on making sure I don't have any more falls. I've had more than enough of those.

[mm1527mm]

I feel more fatigue as day goes on. If there is alot of heat even earlier

[Spanishpopmama]

I’m sorry for your symptoms! I feel that mine are bad….. but makes me appreciate what I have! I find that I still don’t know when I am going to be good or bad after 10 years! I wish there was a way to know ahead of time. I feel that I don’t have a specific time of day that is better or worse! At least I haven’t recognized it!