My MSAA Community
3,453 members6,451 posts

How to manage these conversations?

I adore this forum. I look forward to reading all the messages with my morning coffee ☕️

And then with my mid morning snack, my lunch, my afternoon tea, my supper, my bedtime nightcap...

My point is, I do not want to miss a thing with my new found friends but I should be doing other things and I am going to have to put myself on a forum diet. (No, not because I'm gaining weight 😉)

Any suggestions from perhaps the more tech savvy among us on how to best do this?

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Me, too, Erash. The dusting and scrubbing is calling. I'd much rather visit with everyone though. 💕

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Life is too too short to be dusting and vacuuming, no one else will do it, the dust will still be there tomorrow. Enjoy yourselves, visit the forum! 🙋 🌈

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I agree w Jimeka, visit with us. If you must dust do it when we are sleeping. I have come to rely on you guys. I used to post some things on Facebook but realized no one understands. This place is the best!!!

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We have to take a break and sit often. This forum is a good way to articulate thoughts and use your brain . It can be a little obsessive though. That's where practicing self discipline comes in

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I like to check in to see how everyone is doing, I know I have been helped on bad days, so if I can give something back

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I believe Good_Enough and Jimeka and everyone else who posted the dust can wait! You never know when someone might need your laugh, joke, or support. Don't deny yourself a chance to make a difference. Especially erash and everyone else who has so much to give! MSFighter

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I know I am totally addicted to the forum, all the good advice, jokes and just healthy conversations with people who "get it" ! Thank you all for making me smile each day. Kelly xx

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I know what you mean, Erash. I'm a member of a few relevant forums on here so usually do a once a day check in to catch up. It takes a little time but then I 'm not able to keep up the frantically packed physical schedule I used to anyway, so is a nice 'sitty downy' activity for me. I think for a lot of users, these types of forums are invaluable, especially if their activities are limited or they are uncomfortable socialising in other ways ( Sweating, stuttering, odd movement and being generally vague are my personal social demons ! ). The best thing in forums such as these is the understanding and non judgemental acceptance - something we often don't find in the 'outside' world amongst non affected people. Since we often experience similar symptoms, we can reassure, empathise, support and share coping strategies. Then there is the dark humour ... : ))

So by all means ration yourself if you are neglecting essential tasks ( not sure I'm classing daily dusting as essential ! ) but do not feel guilty for visiting - we have a rough enough time and often a lack of support in our lives, we need to make time for our needs too. x

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angelite your words are so very true. Thank you for that perspective. Believe me, dusting, no matter how much it might be needed, is never something I feel guilty NOT doing! 😊

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erash Yesterday I was going to post about this very same thing, but you beat me to it. My topic was going to start with 'I HAVE A REAL PROBLEM WITH THIS GROUP ' then I was going to say that the problem is I couldn't find a nicer group of people to chat with. You guys posts interesting topics and share stories of yourself, you offer advice and make people laugh. I was going to say you also make it hard to get things accomplished but erash spoke these words. I have mentioned in other posts that I'm newly diagnosed and I don't believe my condition is as progressed as some of yours, but I find you all very accepting no matter where you are in the stage of this disease. You do bring a smile to my face and my heart when I I come on here, so thanks. Judi

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Judi4 very true! This is A very special group. I have joined and unjointed several other groups. Some were pretty easy to ignore. But I don't want to miss a thing here! That's the problem...😊

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erash l hate to say it, but it sounds like l dont get on enough? I get on here 1st thing in the morning for awhile, answer my messages and posts and feeds :) Then l dont get on for rest of the day. I think it's because, once lm here l will spend hrs :D What to do.....

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Jesmcd2 well when you are on, you are very productive. I feel like we are always talking and loved it! 👍

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Oh l love this place also erash ,l have learned so much from ALL of you! I also don't feel so alone anymore ♡ Being with ppl that understand what lm going thru, is making a huge difference in "getting my happy back" regarding my very first post :)

So Thank You ♡

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😊😊😊you and everyone else deserve much happy😊😊😊

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My dear, you have given me a lot of support already and I can't thank you enough! Let's giggle more!!!

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I love ❤️ this group too. All of you are accepting, honest, share your experiences and expertise, and the laughter...I truly treasure the laughter, especially on those less-than-uplifting days.

I know if I have a question about any drug or symptom, you all will have the answers. And if I need to unload or cry, you will listen and understand. Thank you.

Yes, the dusting is long overdue. I can take my finger and write 'MS' on the bookshelf and it would be easier to read than the book titles. 😉 I just need to find better balance. Mental stuff (even reading and replying here) drains me, and leaves no energy for anything else. Maybe I ought to go back on the Ritalin... But I will figure it out.

Fortunately, I have no children at home anymore and I'm no longer employed. At least I'm not neglecting them. As for my husband, he thinks you all and this forum are GREAT!

Thankful for all of you!💕

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Tutu what's the difference between Ritalin and Adderall? Oh wait, asking the nurses erash and greaterexp :D l see my PCP tomorrow about it. The provigal isn't working anymore :( and l refuse to go back to sleeping like l was.

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@jes

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Jesmcd2 they are both stimulants with similar side effect profiles. Chemically, they're slightly different. Adderal has a longer half life (means less frequent dosing) but both have short and longer formulations. Some may respond with o one better than another. Rx May depend on what your neuro is most comfortable with. Hope you get some pep!

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I'm not even asking my Neuro about it. Just my PCP, lm always having a problem with meds. My body either rejects them or they just don't work, or they work for a bit then just stop.

Any idea why that happens erash ?

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Possibly tachyphylaxis: the receptors in your body for the drug become resistant.

I take nuvigil (armodafinil) which just went generic (<$)

Similar to Provigil but some find works better

I take half the 150mg as the whole gives me panic feelings

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I have been on Modafinil 200 mg for about 3 months and it's stopped. So... ugh very fustrating. Just like l cant take anything in the Codine family, anymore. Hydrocodine is what they always want to give you here and l cant take it lol. I can't win. I'm waiting for the tramadol to start making me sick, then it's starting all over again ugh

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🙁

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Good morning, Jesmcd2. I tried provogil years ago and it didn't work for me. My body was tired, but my mind raced. When it came time for bed, I couldn't sleep.

Amantadine (an anti-viral) worked for the first 3 or 4 years I was on it. Gave me energy during the day and it didn't affect my sleep at night (though I was on Soma and Celebrex back then too, and those helped me rest and sleep at night).

I take the generic Ritalin (Methylphenidate 10mg) as needed. My neuro prescribed it twice a day, but I only take it once in the morning. It does help me physically push through my morning. I get more accomplished while on it. I'm afraid I'd kill myself if I took it in the afternoon too. I'd just push myself too hard for too long then. You do need to take it before 3pm though. My doc advised that was the cutoff or it would inhibit sleep at night. There is also an extended release formula, but my insurance won't cover it.

All that said, I only take it as needed: a function to attend, a long road trip where I need to help drive, a project that must be done by a deadline. I've learned that payback for overdoing it physically isn't worth it. I just nap and call it a day by early afternoon instead. I had really hoped it would help me more mentally, but that hasn't really happened. Maybe if I took it daily? Haven't tried that yet. But I don't think it has residual effects.

I hope you find something that works well for you, Jes. 💕

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My PCP is pretty good and understanding about what's going on with me.

Thank you so much for the advice Tutu . I hear you about calling it a day early. Sometimes making it until 4 is a challenge. Drives me nuts. :(

Maybe you should take it the way your supposed to and see what happens? Just an ldea :)

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Not sure I can survive a full day of physical work. A half day wipes me out for a day or two afterward. 😉 I do move at a slug's pace though. Ritalin does NOT transform me into Superwoman. Just a longer-lasting version of myself.

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I take 30 minute breaks b/w activity and am done by early afternoon. Anything beyond that is forced and on 1/2 the power pack 🐌🐌🐌

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Me too. Used to go until 3. Now it's closer to 1pm.

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erash l usally have most of my energy in the morning also. And everything is done in shifts ugh lol

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I just don't want to go back to sleeping 3 days straight again. Already have slept 1 full day away. I don't want to be super woman either Tutu but being awake is a good thing :)

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I take generic adderall because provigil stopped working. I would be unconscious without it!

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We really need something beyond the like button to acknowledge each other's comments 🙁

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That's why l asked for @ in front of my name erash l cant keep up some times lol

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It's not dust; it's patina.

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LOL. My mother said that dust is a protective covering for furniture, etc, and that was why she didn't dust often. In my house, whoever writes in the dust gets the honor of dusting. No kids ... no names ... plenty of dust. ;)

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Eleyne92 When I was a little girl we had to move my grandmother to a mental institution, so we had to go in and clean her apartment so the landlord could rent it out. My grandmother was a heavy smoker and there was nicotine stains left behind. So my sister and I thought it would be funny to write our name on the wall. Guess who was cleaning walls after my father walked in.😆

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I'm sure you weren't laughing about it at the time.

I'm an incurable doodler. As a child, I was caught drawing on one of the school doors during recess and had to clean the door ... while the rest of my classmates filed past on their way back to class. Embarrassing, to say the least.

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I love it! It's my laugh of the day and a line I am sure to repeat!

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I've been AWOL for a few days. My Dad is here for a couple of weeks, as well as the normal family Thanksgiving I and II celebrations. My kids do not have accessible homes so I host the Feasts. Two different days to accommodate work schedules, spouses' families, and the sheer number of family members. It was a great weekend, but it's taken a lot out of me. Today has been blessedly quiet.

I hope to be more 'here' going forward.

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I think your insane Eleyne92 yikes! Having 1 thanksgiving is hard enough, let alone 2. We hope to see more of you also now!

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This group is my dessert, and since I love dessert, I visit at least once a day. It's my "shot in the arm" of encouragement, so I don't feel too guilty about it.

I'm fairly good at rationalization, and I'm always happy to help others rationalize, too.

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💡I think I came up with a solution for me anyway. Today, each time I received an email indicating there was a message from our wonderful group, I put it in a newly created folder. Then I know your messages are safe and I can return to them later (after I've finished my dusting 😉)

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When you have finished yours you can come and do mine. Oops, just a minute aren't we due to fly to Bermuda, forget the dusting!

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