It feels like I can't stand for that long these days. I'm up for a while and then feel like I have to sit down. It also feels like sitting down never felt so good.
Feeling slower lately!: It feels like I... - My MSAA Community
Feeling slower lately!
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positiveness
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Jesmcd2CommunityAmbassador
Hi positiveness l love your name. I hear you about the standing and sitting. I do everything in shifts now. Do the dishes, then sit, dust, then sit, vacuum then sit. It's a whole new ball game now. All l can tell is Listen to your body! If you need to sit, then do it. 
There's no reason not to, and besides like you said it feels good.
thank you so much for that reply Jesmcd2. I'm glad you like the name I use. My wife always tells me to relax, but I always want to help and not leave so much for her or anyone else. I have quite the dilemma at times.
Me too jesmcd2. I'm learning to pace myself.
I have to say, lm not liking it much erash . It seems like nothing gets done. Ugh and then l have to start all over again. Drives me insane! Yeah l have a touch of ocd, which doesn't help. Lol
I can relate. Learning to live with chaos is difficult. Usually all that I can come up with is "whatever". The problem is the feeling of process to completion . Constant ambiguity. Breathe and let go...
Yeh-- and the distractability is driving me nuts. I'm supposed to be doing something important right now but I'm like a 2-yr. old. Any shiny object takes me off task 
You know what, I also get distracted a lot during the course of the day. It's terrible!
Doing things in shifts is the way to go these da6s. I do th3 same.
Like Jes, I love your name! And ditto to everything else she said, too. Up until this year, I was able to push through the fatigue and was afraid to sit for fear I wouldn't be able to get back up and get going again. Don't get me wrong-I worked at a snail's pace! But these days I do as Jes said. It's hard to accept the change, but it's getting easier taking it a day at a time
I'm sure your wife and family view things differently than you do. 💕
Hi Tutu! I'm glad you like the name. I can relate to your feeling about sitting down. I think about it a lot. I'm sure my wife and our family feel differently as well.
Hi and hello. I find if I don't sit when my body tells me to and I push myself and try to keep going, I pay for it later. So if your body says sit, sit. I am sure that your body will appreciate it, cheers Jimeka
Hello positiveness this is MSFighter welcoming you to our wonderful chat room. You have come to the right place to share any concerns or have any questions you might have in regards to MS. Although Ms leads each of us down a slightly different bumpy path, all of our paths have many similarities.
You're concerned about the problems you're having with your legs is a common concern among many people with MS. Ms robs us of our endurance acid attacks are nervous system. I too have trouble standing still in one spot for very long. The legs start cramping and hurting in my calves, then Works its way up through my thighs and finally into my lower back. I do much better walking slowly than I do standing still. The only thing worse than standing still for me is squatting. That kills me within a minute or so.
And she described that sitting down never felt so good I too understand and can appreciate that fact. My recliner has become my new best friend. Haha!
The only word of advice I can try to pass on to you positiveness is to conserve energy whenever you have a chance to do so. If you have not yet gone out and gotten one get your doctor to write you the form out that will get you a handicap permit. Go out if you haven't yet also and buy yourself a nice little Walker with a bench seat on it. That way while you're waiting in lines you can put on the brakes and turn it around and set on it. They're wonderful devices to help take the weight off your legs. You might look for them also in Peddler's malls or flea markets. You can often find them there at ridiculously low prices. Be sure and take someone along who can check it out and make sure it's mechanically solid for you. I bought mine, that I have used for the last two years, for $50 at Peddler's Mall. It's been worth every cent I paid for it!
Please keep in touch. We are happy that you have found this. And I would like you to remember that together we are stronger.
Love that ldea Hidden about the handicap permit. I also have one. Umm what exactly is a Peddlers Mall tho?
Also positiveness learn to shop online, amazon smile is my best friend this holiday season. No way am l going to the stores, hahaha
Shopping online is great for people like us. It is a great help and whatever organization like Amazon smile that gives a donation to MS is wonderful.
Jessmcd2, a Peddler's Mall is the best place in the world to waste time that is on your hands when you find yourself bored. Basically what it is is a big mall with individual moose sometimes 12 by 12 sometimes 10 by 10 sometimes bigger that have used products for sale. It is like a giant yard sale under roof with probably a hundred maybe a hundred fifty individual yard sale all going on at the same time. Sometimes you find decent antiques there, sometimes it's items like children's clothing or adults clothing or retro clothing. Most of the time it's just unique stuff. Something vendor sell knives some deal with medical equipment like where I got my walker, you name it and you can probably find it in a Peddlers Mall. I love them. Anybody who loves to go to yard sales need to find a Peddlers Mall and visit it frequently. They are lots of fun if you're into this kind of stuff!
Here in Maine we call Peddler's malls a Flea market. Don't know where that name came from, peddler's mall makes much more sense. With winter coming (thus no flea markets) I don't think I'll change anything this year.... will I remember this conversation next spring??? We'll see????
Bravery207, we have flea market down here as well but there are more outdoor type events with temporary canopies setup to keep the rain off the merchants goods. We actually have permanent flea market set up here too. They are large metal buildings with booths set up inside them. A merchant has to be at each Booth to sell their own Goods. They are typically only open on Fridays, Saturdays, and Sundays. I can think of three of them within an hour to an hour and 20-minute Drive. There's really not a lot difference in those than there are Peddlers Mall except at a flea market each Booth is manned by the individual seller of the stuff in their booth. At Peddlers Mall each booth clearly display their Peddlers number on every piece of goods for sale in their booth. Then alongside their Peddler number is the price they want for that piece of merchandise. The Peddlers Mall then has a front checkout area that checks out whatever purchases you bring up from as many booths as you want to purchase from. In other words the person selling the merchandise doesn't have to be there to sell their goods. The Peddlers Mall that I know are also open seven days a week. Bravery both places are grand spots to waste time at. But Peddlers Mall are open 7 days a week year round. So that makes them up a bit more reliable and convenient. Fancy1959.
That's a HUGE moose, Jes! 😳 Sorry, couldn't help it. In one of those moods, I guess. Go ahead, find all the typos in my posts. I deserve it. 😁
Tutu, it wasn't Jess that had the huge moose, it was me, fancy! In that huge moose was brought to you from the lovely word correction of my Samsung Galaxy Notebook.
The moose was not supposed to be a moose at all it was actually supposed to be a booth! And yes I agree a 12 by 12 moose is a fairly wide moose to say the least So much for my proofreading skills!
Oh, Fancy, I knew what you meant. It just took me a second read-thru to do so! ☺️ But you did make me chuckle and I always appreciate a a laugh. Thanks! 💕
I think it's long past my bedtime--I mistakenly teased Jes about the "Individual moose sometimes 12x12"...and it wasn't Jes!!! 😳
Okay, I deserve it...tease me all you want
I was wondering what you WAshingtongirl and Fancy1959 were talking about. Mostly tutu. I didn't know what l did yikes haha thanks for filling me in lolol
Poor Jes, bet you got blamed for things you didn't do when you were a kid, too! 😉
Hi Fancy1959. I pray you are doing well and no more falls
positiveness• in reply to
Those are great suggestions. I am fortunate to have the handicap placard and a walker with a seat on it. = ) Thank you for getting back to me so quickly.
That's fantastic positiveness that you have everything you need to conserve your energy. Now simply don't wait until you're worn out before you start conserving your energy. I know I personally have a hard time, because I'm so pigheaded, in making sure I give in and get ahead of my MS. But I realize that when I conserve my energy i protect myself from unpleasant experiences that MS can cause. Use your handicap permit every single day not just on bad days. Take your Walker with you and use it whenever you find yourself standing still. Used the little motorized shopping carts at big grocery and box stores whenever they are available. I know it's a big adjustment but we have to realize that we're not the same person with the same stamina we were before MS decided to come move in with us. It is important that we get ahead of this monster we call MS. In doing so we have more control over the situations we find ourselves in and over the dreaded monster itself.
Those are great suggestions. I really like this program that we are able to use. It really helps out.
Well said Fancy1959
SueAB• in reply to
I could not have said it any better, MS Fighter! You always have such good input and are one of the jewels of our chat room!
SueAB, thank you ma'am for the awesome compliment! Most of what I talk about is for my own personal experience and research I have done on MS and all the drugs and treatments that are used to fight this dreaded monster. And like I said if there anything I can relate to it's that I'm super pig headed and I fight my MS tooth and nail. I fight so hard that sometimes I literally drop from sheer exhaustion. This of course drives my husband and my son's nuts. They worry about me excessively and try to wrap me in bubble wrap which doesn't go over well on my end. I have actually had over a dozen falls in the past two years. Luckily I have managed never to break anything except give myself a slight concussion or two. I guess you could say I have a hard head. Haha. My goal is to pass along advice that will keep everybody else from having the same bad experiences of literally crumbling to the ground that I have had. It's very unpleasant. Slowly but surely, I have matured, probably because I have had to, and I protect myself much better than I did a year ago. That's why I keep preaching that together we are stronger. I hope we can learn from each other victories as well as each other's mistakes!
Thanks again SueAB! I hope you stay active in our chat room. I'll look forward to talking and chatting with you. We need the input from all the people we can get. The more members we have the more successful we can become!
I find I have to sit a lot too.
Then I see all the dust that I missed.
Then I get up and forget about it.
Ugh wish l could do that Momjules although there is a rm that if l dont go in there, l can ignore it hahaha, but the living rm? Things have to be picked up and cleaned and noooo clutter.
I'm trying to learn how to ignore the dust. It's hard to do. But I've always been accused of being a perfectionist. I'm accepting the fact that no matter how much I want to, or how hard I try to, I can't meet my own expectations for myself anymore. Continually lowering those expectations has been a challenge in itself.
It is hard to do WAshingtongirl , for me it's just 1 more thing l cant control and lm having a really hard time with that. It's like everything is out of my control now and l really don't like it. Grrrrr
You're right, Jes. I think it is similar to what I see my mom going through now. Our minds tell us we are still able to do things (with MS, as we age, etc.), but our bodies balk and say otherwise. Although I don't want or need anymore of my brain affected by this disease, I wouldn't mind that 'self-expectations' section being faulty at times.
I have always been self sufficient and relying on others has been an adjustment. But you do what ya have to l guess.
Tutu I can ignore the dust pretty well but it's all the short white dog hair that the love of my life, Gidget, leaves behind that drives me nuts. She sheds on everything. That's okay I wouldn't give her up for the world. When I'm home by myself and having a bad day she never leaves my side. That's worth a bazillion dollars.
I feel the same way, with my dog Razor. I found a card the other day with a picture of a dog lying full length on the sofa and it said" if you don't like the hair, find another chair" summed up my dog 🐶
I can understand that, Fancy. They give unconditional love and are ALWAYS happy to see you. I've even thought of getting a cat--a bit easier than taking a dog out to potty, etc., but I can't add anything else to my life right now. Barely able to do all I feel I need to as it is
I'm happy you have Gidget (love the name-reminds me of the old Gidget shows) there with you. I think o can relate...
I hate ironing, but I've gotten to where I pray for my husband when I iron his shirts. I used to do the same for my boys when they lived with us too.
It sounds like you focus on your sweet Gidget and how much you love her, rather than how much you dislike her white hair everywhere!! 💕
Tutu, that is pretty much where I got her name! She is a girl dog and she is a midget, she weighs 12lbs., so there you go.....Gidget!
A lap dog😁
And a bazillion dust mites . I love my dog Penny Lane sooooooo much. Her emotional support is so much more loving then those pesky dust mites. The cats, however . ... They're different , but loved
I feel the same about trying to make everything perfect and needing to lower my standards. It is very hard, especially when I want to make everything look so nice for my wife and children
Lol. That is so true.
I actually was able to do some dusting today. Not all of the dusting, but a good portion of it.
A bit at a time, positiveness! I hope you feel you accomplished tons today!
Thank you Tutu.
Everything is in order and I Vacuum every day(dog hair) , but the dust will just appear and I do have dark corners that gather dust too. I'm home everyday so I'm determined to keep up on things. Dust does seem to give me the largest fight. Ugh!!
Haha Momjules l have a black lab and a light carpet so l completely understand about the vacuuming. There is 1 trick about dusting tho... if you don't move anything, you can't tell lolol l try to do that for a cpl days and hope for cog Fog lolol
Dust is there, but it's my windows and hardwood floors that drives me nuts, Momjules. I don't know if it takes more energy to clean them or just as much to ignore them. 😉
Hi there tutu!I figure what dust I miss today, I'll get tomorrow.
What is that song--"Tomirrow, tomorrow, there's always tomorrow..." Yep, that's a good tune to carry around with me at all times. Helps with cleaning, but also with this disease. Tomorrow I'll dust. Tomorrow I'll feel better. Excellent! Thanks! 💕
I have a curio cabinet where I used to collect lighthouses. The dust looks like sand! Works for me !!
If you 'sweep' the sandy dust into piles, it'll look like your lighthouses sit on islands or rugged, rocky shorelines!
When we moved three years ago, I was determined to simplify my life. I just couldn't keep up anymore. Although our house isn't 'stark' or devoid of warmth, I was careful (and still am) of how much I decorate. I have furniture to dust, but little to move around or dust under. We ripped out our grass out front (in a year or two we'll do the backyard) and replaced it with perennials, trees, shrubs and bark (and LOTS of spring bulbs 🌷💐) so there is minimum yard work too. I don't have pets, so I don't have to vacuum as often as you do. I would love another dog, but that was another decision we made-at least for this time in our lives-I think the added upkeep and responsibility of a pet would be too much for me right now. I think this switch (to simplify) was probably easier for me because we did it in conjunction with a move.
We had a little pond in our backyard. We took such good care of it with rocks and flowers and we had fish for years. It had lights all around it. It looks like a abandoned mess now. After I got sick , it just wasn't important anymore. So it sits here looking awful.
It sounds like you maintained it, and when you no longer could, no one else picked it up. Is that right?
At our previous home, I created a beautiful garden. I kept digging up more grass, replacing it with new topsoil, and planting more and more flowers. I even had one area that was a cutting garden. I had so many flowers, that I stuck a couple buckets out front and people would stop by and grab bouquets of gladiolus, dahlias, sweet peas, etc. a couple times a week. I loved that!
But when my MS progressed and the garden became too much work for me and safety was a factor as I fell a few times while weeding or cutting on a slope, a part of me grieved. (I still miss those flowers!) It would have been too expensive for us to hire someone to maintain the garden as I had. Our move came at a good time.
Sorry, I got carried away there...but about your pond...will someone else step in and fix/maintain it? Can you afford to have someone do it? Or maybe fill it in? Maybe you have to decide what you can live with...staring at the pond as it is, or deciding what to do with it. I feel for you there. Been there too. 💕
Hello! My children are grown and married now so it's just me and my husband.
The yard was beautiful. Like you, we had flower beds everywhere and not a weed to be seen!
We are older now. We are both 54 years old. My children are 32 and 29. We are looking to move in the near future. My hubby would still need a job and medical insurance.
No one wants this pond. We have offered it for free with the filter and everything.
It's a small 220 gallon pond but it was nice. It just got lost.
I can't afford to have someone keep house for me so now my husband and I do the cleaning. He does the heavy work and I do the light work. I am working on training my service dog to use the dust mop to clean up her hair that she sheds everywhere! Only been working at it a week and probably won't have a lot of luck with it. I would probably be better off getting a Roomba.
I can sometimes get Willow to help with the dusting. She likes the wood handle from the feather duster and looking on the furniture tops. She also likes shaking her head to dust the baseboards. She is a funny dog.
She sounds a lot of fun
Thanks everyone for getting back to me. = )
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