Be careful using those little bursts of ... - My MSAA Community

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Be careful using those little bursts of energy

Do any of you have times when you get a little extra energy, so you take advantage of it? I still haven't learned that just because I have a good day, I shouldn't use every ounce of energy, or I will pay for it for the next couple of days.

Do any of you have the roller coaster of symptoms, or are you pretty stable day to day?

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I regularly overestimate my energy bursts. Haven't had as many lately as my symptoms are way flared up now (relapse?). When I'm having a "good" day energy-wise though I'll try to get all the stuff done that I've been saving for one of those days. I have to pace myself of course, can't move fast (even if I wanted to), I go, go, go, oops - hit the wall and can't go anymore. My husband will be saying to me - honey, now don't do too much. And I tell him - there's no such thing. I either can do a task or I can't. There is no in between.

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I am pretty stable, especially when I mentally prepare for the day. Burst of energy can run amok and I will have to pay for it for several days. Really happy with aubagio! Blessings Cynthia

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At 1 point I would be bouncing off the wall with energy and I would take advantage of it, and do everything I could think of. Then an hour later and the next couple days after I paid for it. Now if I have extra energy I just sit my bouncing off the tail down.

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yes, I head outside to do something in the sunshine which I miss. Takes all my effort to get back inside my house, however for that short time I do forget I have MS. It is worth the price I tell myself pace yourself I never do.

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I am my own worst enemy. I have a mental list to do every day, I try and do it and I will push myself until I have done it. I can’t help myself, but it keeps me going.

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Sometimes, it is really worth it to push it, even if it's for just the mental boost we get from achieving something. Of course, there are times when I regret pushing so hard because I pay for it later. That usually means my husband has to pay, too, to a certain extent. I just can't seem to strike that desired balance. Our dear friend, Tutu, used to tell me to "just ask God what He wants you to do today. That's all you really need to do." Great advice, but I don't often listen!

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I am getting better at pacing myself for the most part, but occasionally I can over due it and pay the next day. I now try to set goals and that way a get something done every day 👍. Now that it’s 90 degrees plus by 1pm I do everything outside in the morning and things inside afternoon. I am usually burnt out by 6:30 or 7pm. I lay down and read or watch 📺. Surprisingly I am usually awake till 11:30 and up at 6am. Today I cleaned both bathrooms, sinks, tubs 🛁, toilets 🚽 and floors and got all the garbage out for pickup tomorrow 👍. I am so great full I can still get some things done ✅ and have you guys here to listen 👍🙏😉. Ken 🐾🐾

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Ken, it sounds like you have figured out a very good system. I’ve been wondering how you’re doing. You’re in my prayers always.

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A wise system, in the heat and humidity, it is wise to take advantage of morning cool outside, afternoon heat in. But do take care NOT to over do. As we all know, none of these necessary tasks ever get completely finished...the trash can gradually fills again, the bathroom becomes slightly less clean, as do all those pesky pots and pans. I used to take on housecleaning with the expectation that the floors would stay clean, the windows sparkling, the surfaces gleaming...until I realized that all that work lasted for about 10 minutes. The dogs would drink water and drip across the clean floor, a spider would emerge overnight to spin a web in the highest corner of a room, and a dust bunny would emerge from where it had taken shelter from the vac. So now, I keep up, sorta, and know that nothing stays clean forever. I get to it when I get to it.

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I remind myself of the immortal quote: "A clean house is a sign of a misspent life." While that's true, I can only let it go so far with dust and clutter.

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My life is very misspent, but I am getting better. Not only have I named my dust bunnies, I am also feeding them, supposedly, because they are getting bigger! :-D

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They seem to eat anything! I'm afraid to look under my bed.

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I think that is what my mom would refer to when she said that there were no 'monsters' underneath my bed! She was a neat nick! I have solved the 'monsters' under my bed by storing ALL my quilt books there! :-D

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Great use of space! There's less room for the dust monsters, too, that way.

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I do have to sweep (constantly) because of the two (constantly) shedding dogs...one with light fine hair, and the other with thick cream fur under a long black upper coat and then despite boot scrapers and door mats there is all the grit and leaf litter that the three of us track inside. But dusting shelves? nah, not so often!

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Yes, I only have one dog, but the hair means daily vacuuming. Ugh!

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I like that quote! I must post it in my house!

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I was thinking the same thing! My husband expected me to be like his mom when we first got married. You could perform surgery in her house. If she can't find something dirty to clean she'll clean something clean because it can only get cleaner that way. My attitude "It doesn't matter how well I or bad I clean today because I have to do it again tomorrow and I have much better things to do with my life than waste it cleaning!"

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A man who does toilets?Ok im writing that in my journal!Way to go Kenu

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Yes, the fatigue (or the energy) is a roller coaster. I'm better at pacing myself when I know I have several days in front of me with scheduled projects and tasks. But now and then I take advantage of the burst of energy to do something I really wants to do and forget about MS. I've also stopped filling guilty if I have to spend a Sunday in bed to recover. To me it's well worth it if I had a good time in my burst of energy.

So I might just be more careful about what I put my energy towards. It has to be worth it.

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Over do now, pay later!

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stable? what is that? I just know for myself I can't go out and do errands and expect to come home and have an abundance of energy,so if I am going to clean my house,I can't go anywhere.oh, the lessons we learn

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I've come to understand it at least well enough to just sew all day and leave the cleaning for tomorrow at times.

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I am still trying to learn that lesson, unfortunately :(

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I'm so blessed that my step daughter is paying off a debt to us by cleaning for me about every 6 weeks or so. She can get it all done in one day, so I can keep up with the smaller stuff as needed. I feel guilty about allowing this, as I feel it's my job to keep up with the housework since I don't work outside the home. But my husband is thrilled with the situation. He hates to see me struggle so much when I overdo at all, and this helps me avoid that a little. We have a carpet cleaner, but I'm thinking about having the window cleaning/carpet cleaning company we love come and take care of it all for a deep discount.

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That sounds like the way to go ~ go with the cleaning company. I haven't cleaned my carpets or windows in such a long time! To have a clean home, it is probably easier to move than to clean, at this point... :-D

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I was silly enough to think I was part of that decision making process to choose what I can do,reality is ms. has a mind of it's own!

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For sure. I think at times I'm the one in control. Not always with MS

Blessings❤becky

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Stable is where you keep the horses, silly :-D

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I'll tell my neurologist that.

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I like that one! Clever girl

Blessings❤becky

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I must remember that one!! I'd rather be with the horses anyway.😊

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I hate it when my 'get and go' got up and went ~ leaving me in its dust! :-D

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Of all the things to leave you in!

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Yes, such irony, my friend! :-D

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I take advantage of it when I can and suffer the consequences later- which really isn't too bad. My loved ones have it worse 🤣

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Somewhat stable but I, too, use my bits of energy when it comes for as long as it's here. Then I die.

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Yep, ups and downs. Even I who seem to be making great gains... My "Up" used to last a couple hours each day, then "Down" Comatose/Lost in the Fog for the rest of the day, everyday..day after day for years.

To now: Did a "triathlon" over the long 4th of July weekend. Day 1, Attempted a 9.8 mile walk, got about 7.5, and though I could have dragged myself to finish imagining myself swimming relaxing strokes thru the thick heat and humidity that day while in a daze, we crashed and Ubered it back. Still wound up with some 18K steps! Day 2, took a break, recovering, still exhausted, so cooked instead. Still...Dragged myself thru the neighborhood, only about 6K steps. Day 3, kayaked about 3-4 hours, then walked to get 10K steps. Day 4, triked 8.5 miles, again walked thereafter to get 10K steps, as there is lots of coasting biking. Today was supposed to be the rest all day day. Nope, started shopping for needed make life simpler items, like daily shower spray and...

starting with the hardware stores that you can get in by 6am, then Walmart,.......Should have rested.... By noon, the iced black coffee, and jet alert caffeine pills, along with extra vitamin B, wore off. I know this feeling well...BUT, I accomplished a lot! So healthy leftovers tonite! (Got really lucky, have leftovers!) I'll be resting in bed with the window unit set to freeze. Till then. Should recover by...4:30 am! At least my ups and downs are getting better and further apart, eating healthy! Dinner tonite? Leftover lemon herb griied chicken topped with home made basil pesto, and diced watermelon salad with fresh mint and bits of red onion & ??? To finish this reply, you made me crawl downstairs to look at yesterday's menu....& lime juice and a bit of extra virgin olive oil, the oil from anywhere but Italy where the EVOO is often not olive oil but cut with cheaper oils. Haven't forgotten those stories from how long ago? Only because I Still have the note on my phone?, which brands good, which bad, from Italy. Easier to buy from beyond the mafia borders than remember which are good. So now....how am I going to get back to the freezer (bed room) upstairs????

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You absolutely astonish me! Way to go!

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So that's all you got done then,eh?

Awesome!! :) :) :)

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Sounds like me... I go and push and deal with the results of pushing myself tooo hard. Good for YOU!

Blessings❤becky

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But then, you get right back up, and do it again, and again, Got up at 4:30 AM, and again another gangbuster day. Okay, a lot more cooking and cleaning than...but remember....bodies in motion tend to stay in motion. Okay, with big hick-ups with M.S.... But as long as you can bounce back! Now, if I can only remember where I put my to do list so I can see what I did today?

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TOTALLY! Right up there with ya

So long as we can bounce back. Sometimes it gets scarey but you have to push sometimes to the limit! We're almost like athletes going the extra mile to do what we want to accomplish our goal.

Have a good night MarkUpnorth

❤becky

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wholley jamoley

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My mother in law gave me the one two yesterday about slowing down! She advised me with Jody gone I have my two beloved furbabies that depend on me for the next 10-12 years. Not only that but my son, Tyler! It was a good reminder, but I don’t have the money she does to have someone come in every week all day to clean the house 🏡. The problem is I wasn’t brought up that way and makes it even harder. I know, I’ll try 👍🙏😉 Ken 🐾🐾

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It has been a real roller coaster with MS. In the beginning had terrible fatigue. Then over the years lots of PT took a lot of trial and error of how much physical activity to do each day and pay for it later. But I keep pushing myself! Pay for it now and then. Get the drunken sailor walk at times. In pain from pushing it too much. I'm getting stronger and healthier. My current DMT Rebif is making a difference! Hooray for NOW.

I live for TODAY each and every day! I am very THANKFUL for what I am able to do living with MS! I try to not let anything hold me back and do as much as I can everyday. Blessings ❤becky

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Yesssss. This is me all the way. I tend to over do it with any burst of extra energy then my tank is empty for atleast 2 days afterwards. I really need to space it out.

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I tend to push beyond my limits and pay for it later.

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