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Question of the Month (Feb. '13) - Expressing your Normal Self
Living with MS or looking for answers about MS can be all consuming and we often find the need to step back and just be 'normal' for our own sake. What have you done lately to push MS to the back and foster a sense of normalcy?
Our Monthly Question focuses on a specific topic. There are no right or wrong answers -we just want to hear about your experiences, whether you are a veteran of this forum or you are new and have been lurking, waiting for the inspiration to share your thoughts.
We can't offer a cup of coffee or tea while we chat- you will have to pour your own - but we hope you will sit down with us at our virtual table and share your thoughts.
- Your MS Community Leaders
Our Monthly Question focuses on a specific topic. There are no right or wrong answers -we just want to hear about your experiences, whether you are a veteran of this forum or you are new and have been lurking, waiting for the inspiration to share your thoughts.
We can't offer a cup of coffee or tea while we chat- you will have to pour your own - but we hope you will sit down with us at our virtual table and share your thoughts.
- Your MS Community Leaders
Yes, this is the last day of March and the question was posed for February, but seeing as I'm a very new member, I hope I can get an extension. How about it, prof?
The days are getting much brighter (our clocks only changed today) and my mood seems to have experienced the related annual lift. This weekend has been full of things that are very much 'me' involving aspect that have been hibernating for a while.
Friday we flew our tricopter in the park (a made-from-scratch remote controlled helicopter). The crash was impressive, but it's back in action now!
Yesterday was a walking gallery tour (free). http://www.artforartsake.org/ It was fantastic to meet a small group of people who had something in common right off the bat! Such a nice vibe. I even had a 'love at first sight' experience with the works of a particular artist, and if that doesn't lift you up I'm not sure what can.
Today was a concert in the museum (free) of Enescu and Brahms. I can take or leave the Brahms (though it was played fantastically), but the Enescu was astounding. http://www.hughlane.ie/all/827-sundaysnoon-quintet
Tomorrow I start a writing project through Camp Nanowrimo. (free... can you see a trend?)
So I've done with my husband, with strangers, with a dear friend, and alone. They've stretched my dexterity, my legs, my mind, and my resolve (nearly cancelled today, but got out the door!).
I'm certainly not always this socially active, but I can look on this weekend and feel so much positive reinforcement. I hope it can carry over in those times I'm a little more inclined to isolate myself and forget what I truly, truly enjoy.
It was a great weekend!
The days are getting much brighter (our clocks only changed today) and my mood seems to have experienced the related annual lift. This weekend has been full of things that are very much 'me' involving aspect that have been hibernating for a while.
Friday we flew our tricopter in the park (a made-from-scratch remote controlled helicopter). The crash was impressive, but it's back in action now!
Yesterday was a walking gallery tour (free). http://www.artforartsake.org/ It was fantastic to meet a small group of people who had something in common right off the bat! Such a nice vibe. I even had a 'love at first sight' experience with the works of a particular artist, and if that doesn't lift you up I'm not sure what can.
Today was a concert in the museum (free) of Enescu and Brahms. I can take or leave the Brahms (though it was played fantastically), but the Enescu was astounding. http://www.hughlane.ie/all/827-sundaysnoon-quintet
Tomorrow I start a writing project through Camp Nanowrimo. (free... can you see a trend?)
So I've done with my husband, with strangers, with a dear friend, and alone. They've stretched my dexterity, my legs, my mind, and my resolve (nearly cancelled today, but got out the door!).
I'm certainly not always this socially active, but I can look on this weekend and feel so much positive reinforcement. I hope it can carry over in those times I'm a little more inclined to isolate myself and forget what I truly, truly enjoy.
It was a great weekend!
I realize I'm the proverbial day late and dollar short to be posting on the February question of the month (I’ll blame it on my little surgery hiatus) but I did want to dash in with a contribution.
I don’t think as much about the loss of my physical abilities these days (she lied). Can’t do stuff anymore but old age and arthritis took the blame for most of those losses even if MS was the real villain. No point in going back to re-point a finger.
As most of you have said in one way or another ‘normal’ isn’t about pretending I can shed MS. It’s more like, “What am I doing to make sure MS doesn’t consume my essence as it chomps away at my myelin?”
What am I doing that expresses the inner twopack? I’ll pick two things.
Normal twopack MUST stay connected to the grandkids. So I call the ten year old and we read to each other over the phone when I don’t have sufficient energy for visiting.
Normal twopack loves learning - and science - and nature. So I allow myself to get lost in hours of NatGeo from time to time. This distracts me from a long list of ‘must-do’ tasks that will end up on top of a huge pile of things that aren’t destined to EVER get done. I’ve lost my ability to catch up later but I refuse to always tell twopack her wants have to give way to needs - because of MS.
Oh yeah - should I mention the things I’m learning about aren’t likely to ever be considered essential information? Who really needs to know there are some very cool varieties of snails living deep in the ocean anyway, right? Or that one of them can concentrate energy like a martial artist before striking out with an unnatural force to defeat all opponents? Maybe that ten year old reader I mentioned earlier would be interested? After all, she sports a Tai Kwan Do black belt of her own.
Okay, now I’m two days late and not so short.
We’ll be back soon with a question to ponder for March put feel free to add on here if you come by.
I don’t think as much about the loss of my physical abilities these days (she lied). Can’t do stuff anymore but old age and arthritis took the blame for most of those losses even if MS was the real villain. No point in going back to re-point a finger.
As most of you have said in one way or another ‘normal’ isn’t about pretending I can shed MS. It’s more like, “What am I doing to make sure MS doesn’t consume my essence as it chomps away at my myelin?”
What am I doing that expresses the inner twopack? I’ll pick two things.
Normal twopack MUST stay connected to the grandkids. So I call the ten year old and we read to each other over the phone when I don’t have sufficient energy for visiting.
Normal twopack loves learning - and science - and nature. So I allow myself to get lost in hours of NatGeo from time to time. This distracts me from a long list of ‘must-do’ tasks that will end up on top of a huge pile of things that aren’t destined to EVER get done. I’ve lost my ability to catch up later but I refuse to always tell twopack her wants have to give way to needs - because of MS.
Oh yeah - should I mention the things I’m learning about aren’t likely to ever be considered essential information? Who really needs to know there are some very cool varieties of snails living deep in the ocean anyway, right? Or that one of them can concentrate energy like a martial artist before striking out with an unnatural force to defeat all opponents? Maybe that ten year old reader I mentioned earlier would be interested? After all, she sports a Tai Kwan Do black belt of her own.
Okay, now I’m two days late and not so short.
We’ll be back soon with a question to ponder for March put feel free to add on here if you come by.
Sting? I knew about missing Elton John but I would drag myself off the death bed to see Sting again live! I am glad you continue to travel and don't let MS rule your plans.
Lately I've been busy and preoccupied with our move to a new city, which while perhaps not giving me a senseof 'normalcy', helps keep my mind off of MS. Unpacking and setting up the new house, shopping for what we need, etc. I'm a bit overwhelmed with all there is to do, and am mentally preocuppied with all of it, until I reach my physical limits every few days and am forced to take a break due to exhaustion. I'm also preoccupied with decisions re: window coverings, furniture purchases, etc. and for the first time ever I'm looking into hiring someone to help with this. I don't even know where to begin and am hoping to hand it off to an expert. So although overwhelmed, I'm happy in my new home/city and all of this newness is giving me other things to focus on and enjoy.
Other than that, it is travel that helps to bring normalcy to my life, even if I can't do as much physically as I could, pre-MS. It was one ofthe first things I worried I'd have to give up when was dx'ed. Fortunately I've been able to keep traveling with some minor modifications. Generally, hot climates are out. There's no point. I'd be reminded on a constant basis of my MS as my entire body would be zapping and zinging and exhausted and in pain. Walking in the heat is like trudging through waist deep mud. So I pick cooler locales and stay indoors as needed. My last trip was to Hong Kong last fall, it was a long time in the planning andi wasn't sure if it would ever happen. We picked late Nov for cooler weather. I did get ill, with a cold and laryngitis, and had to adjust accordingly. MS makes even a minor cold that much more miserable. I missed out on Sting and Elton John which we had tickets to, as well as some sights I wanted to see and some nice meals out. But instead of lamenting all of that, I focus on what I DID get to do, the new friends I made, the old friends I did get to spend time with, and the great evenings I did enjoy. And during my downtime, I relaxed and slept and enjoyed the comfy surroundings. My travel companion was my best friend, and she is also an independent and experienced traveler, and happens to be a nurse. So she is understanding of my condition and that I can't always follow through on plans, and she is completely fine with going out on her own. I would never travel with anyone who I think would feel let down by me when I have to slow down. I'll travel as long as I'm able, and hopefully I never have to give it up. Going to a new country, learning a bit of a new language, seeing the sights and meeting new people who have no clue about my illness, is my favourite way to feel normal for a while. Not sure where I'm headed next, but the fun starts with the planning and that too is great in keeping my mind focused on other things.
Other than that, it is travel that helps to bring normalcy to my life, even if I can't do as much physically as I could, pre-MS. It was one ofthe first things I worried I'd have to give up when was dx'ed. Fortunately I've been able to keep traveling with some minor modifications. Generally, hot climates are out. There's no point. I'd be reminded on a constant basis of my MS as my entire body would be zapping and zinging and exhausted and in pain. Walking in the heat is like trudging through waist deep mud. So I pick cooler locales and stay indoors as needed. My last trip was to Hong Kong last fall, it was a long time in the planning andi wasn't sure if it would ever happen. We picked late Nov for cooler weather. I did get ill, with a cold and laryngitis, and had to adjust accordingly. MS makes even a minor cold that much more miserable. I missed out on Sting and Elton John which we had tickets to, as well as some sights I wanted to see and some nice meals out. But instead of lamenting all of that, I focus on what I DID get to do, the new friends I made, the old friends I did get to spend time with, and the great evenings I did enjoy. And during my downtime, I relaxed and slept and enjoyed the comfy surroundings. My travel companion was my best friend, and she is also an independent and experienced traveler, and happens to be a nurse. So she is understanding of my condition and that I can't always follow through on plans, and she is completely fine with going out on her own. I would never travel with anyone who I think would feel let down by me when I have to slow down. I'll travel as long as I'm able, and hopefully I never have to give it up. Going to a new country, learning a bit of a new language, seeing the sights and meeting new people who have no clue about my illness, is my favourite way to feel normal for a while. Not sure where I'm headed next, but the fun starts with the planning and that too is great in keeping my mind focused on other things.
This is a great idea with the monthly question. Really interesting to read all the responses here. Thanks.
For me, basically I "think" I have it pretty easy in the "ignoring" ms. , most of the time. I am a hugely busy person. Too many kids, too little time? Running my kids all over, book club (although having trouble reading/ concetrating on the books for awhile now). Still get out to the book club w my friends for fun and drinks ;). Book doesnt really matter most of the time .
I just do tons in a day, and lots of time pay for it physically, as long as I can get up and go, i will get up and go, right?!
The only thing that makes the world stop for me is my TN. Pain is too much. Other than that, i keep on keeping on! Gotta stay positive for the good days.
Michelle
For me, basically I "think" I have it pretty easy in the "ignoring" ms. , most of the time. I am a hugely busy person. Too many kids, too little time? Running my kids all over, book club (although having trouble reading/ concetrating on the books for awhile now). Still get out to the book club w my friends for fun and drinks ;). Book doesnt really matter most of the time .
I just do tons in a day, and lots of time pay for it physically, as long as I can get up and go, i will get up and go, right?!
The only thing that makes the world stop for me is my TN. Pain is too much. Other than that, i keep on keeping on! Gotta stay positive for the good days.
Michelle
Hi and welcome.
You have posted your question in a thread about another topic. Please go to the main or 'first' page and start over with a new question in a new thread. You will get much more response that way.
Also, please look at our Health Pages, clickable from a column to the right of your screen. You will find many answers.
ess
You have posted your question in a thread about another topic. Please go to the main or 'first' page and start over with a new question in a new thread. You will get much more response that way.
Also, please look at our Health Pages, clickable from a column to the right of your screen. You will find many answers.
ess
Have a question, does a mri of the brain for ms on a 1.5 telsa show lesions or can they be missed. Does a negative mri mean I don't have ms, even with many symtoms of it.
Hi Laura,
This is a great topic for conversation. My mobility is very different from the norm, but I try to keep going.
I have terrific friends who assist me in staying connected to life beyond the MS. For instance, a couple nights ago I went with two other gals to Barnes & Noble just for coffee and a bite. We sat and talked and laughed and laughed some more for about 3 hours. It was super.
For that time I thought very little about my disease, as I did not have to contend with the havoc it has wreaked. For a while I was really normal, not the "new normal."
We just keep on keeping on, do we not?
Beth
This is a great topic for conversation. My mobility is very different from the norm, but I try to keep going.
I have terrific friends who assist me in staying connected to life beyond the MS. For instance, a couple nights ago I went with two other gals to Barnes & Noble just for coffee and a bite. We sat and talked and laughed and laughed some more for about 3 hours. It was super.
For that time I thought very little about my disease, as I did not have to contend with the havoc it has wreaked. For a while I was really normal, not the "new normal."
We just keep on keeping on, do we not?
Beth
It looks like a mixed bag for people here - being able to step away from the MS saga and woes can be next to impossible at times. I'm always happy to hear about people doing things for other people - I love that approach to get out of our own problems.
Congrats to everyone who recognizes the need to find balance and are actively doing that search for the right way for each of you.
And to you old timers who popped up on this post - it's great to see you!
hugs to all,
Laura
Congrats to everyone who recognizes the need to find balance and are actively doing that search for the right way for each of you.
And to you old timers who popped up on this post - it's great to see you!
hugs to all,
Laura
I've thankfully been in a pretty good place, health-wise. Since I've been on disability for years, normal for me is working at being as healthy as I can be. That includes going to the gym almost every day; I love my Zumba! I've been doing 4 - 6 Zumba classes a week & a couple Silver Sneakers Strength classes. I had been trying other classes but over the last couple months have been developing intense tightness in my left leg, so I've had to back off a bit. I've been going to physical therapy for it.
I love to cook healthy meals, finding recipes to try, and shopping for healthy foods. I've been trying to make my own kale chips that are as good as some awesome (but expensive) local ones, but haven't perfected my recipe.
I've been making friends at the gym; one woman has invited me over so she can show me how she makes the beans she brought me some of that were so good. She's from Costa Rica. I went out to coffee with a couple other ladies who go to Zumba with me; we're going to make it a regular Friday after class get-together, with shopping after.
I've managed to go from 202 pounds to 129 in the past year or so.
I'm looking forward to two weeks on Maui, leaving March 8. I did buy some cooling gear for the trip and for Zumba; working on feeling normal while wearing it, lol.
I love to cook healthy meals, finding recipes to try, and shopping for healthy foods. I've been trying to make my own kale chips that are as good as some awesome (but expensive) local ones, but haven't perfected my recipe.
I've been making friends at the gym; one woman has invited me over so she can show me how she makes the beans she brought me some of that were so good. She's from Costa Rica. I went out to coffee with a couple other ladies who go to Zumba with me; we're going to make it a regular Friday after class get-together, with shopping after.
I've managed to go from 202 pounds to 129 in the past year or so.
I'm looking forward to two weeks on Maui, leaving March 8. I did buy some cooling gear for the trip and for Zumba; working on feeling normal while wearing it, lol.
Sierra, I meet a, b, and c people every day, too. Why do I feel obligated to keep coming up with new answers?
And this time, I think I figured out someone's acronym use with no input from Mary! ;>D
And this time, I think I figured out someone's acronym use with no input from Mary! ;>D
I don't know how to find normal right now because I still don't know what I'm dealing with. I have a year-old TM diagnosis, but am going through the wringer health wise again now. Since its rare for TM to be relapsing, I'm waiting to get in to an MS specialist.
In the meantime, my current neuro is as useless as my left hand, as he refuses to treat the symptoms, lest they mask the cause, and I'm bombarded daily by people who want to know a) if I've seen the new dr yet (the wait could be 6 months) b) what's wrong with me, and/or c) if I'm feeling better yet.
It would be nice to have a dx so I could maybe work on finding a new normal.
Sorry, another downer of a post! Tough week here, too.
In the meantime, my current neuro is as useless as my left hand, as he refuses to treat the symptoms, lest they mask the cause, and I'm bombarded daily by people who want to know a) if I've seen the new dr yet (the wait could be 6 months) b) what's wrong with me, and/or c) if I'm feeling better yet.
It would be nice to have a dx so I could maybe work on finding a new normal.
Sorry, another downer of a post! Tough week here, too.
I homeschool a son with HFA, too. Never a dull moment! Every subject must somehow relate to birds at the moment. Some days it's chickens, other it's birds of prey, LOL.
In another thread a poster asked if feeling way down in the dumps was depression. I said I didn't think so.
Kelly has hit on a couple of my MS/Life issues; slowing down at the end of walks and bathroom issues. These are things that don;t prevent me from living a perfectly normal life, but wouldn't it be great if I could marathons (I've done 3)? Wouldn't it be great if it didn't take forever to pee sometimes?
These kinds of things can be easily pushed into the background. But they are also things that, on occasion, remind you that having MS s*cks :-)
Kyle
Kelly has hit on a couple of my MS/Life issues; slowing down at the end of walks and bathroom issues. These are things that don;t prevent me from living a perfectly normal life, but wouldn't it be great if I could marathons (I've done 3)? Wouldn't it be great if it didn't take forever to pee sometimes?
These kinds of things can be easily pushed into the background. But they are also things that, on occasion, remind you that having MS s*cks :-)
Kyle
Good question. I really haven't done anything lately to push the MS to the background. Like so many have said; it's difficult to do. I notice it at work during meeting because I can't see the data up on the screen (even when sitting at the front of the room) - plus the brain fog and doing everything slower.
I try to take a break and take our husky for a walk with my partner. And when we come around the backend of our walk, I'm walking much slower and I know they have to slow down for me. Then the pain from the spasticity and my bathroom issues.
I guess for me it's not trying to be normal and pushing it to the background. It's just trying to live with it and all my other medical stuff going on.
I try to take a break and take our husky for a walk with my partner. And when we come around the backend of our walk, I'm walking much slower and I know they have to slow down for me. Then the pain from the spasticity and my bathroom issues.
I guess for me it's not trying to be normal and pushing it to the background. It's just trying to live with it and all my other medical stuff going on.
Unfortunately my mobility is impacted so every day MS rears its ugly head - whether it be to walk from car to office, around office, or doing things around my house. I try to push it to the back but there it is everytime I stand up. Also there is the daily reminder of taking my meds because without them my mobility would be even worse!~
Between work(7 days a week) the house (cleaning, laundry, food shopping etc. ) Physical therapy there isn't much time for anything else. I push through days handling what needs to be done and try to feel "normal" Some days I am successful at it others not so much!
Between work(7 days a week) the house (cleaning, laundry, food shopping etc. ) Physical therapy there isn't much time for anything else. I push through days handling what needs to be done and try to feel "normal" Some days I am successful at it others not so much!
I volunteer to transport rescued Boston Terriers to their new foster homes. I love it and it makes me feel like I'm making a difference in their lives. I like to drive so I feel like the "normal" me in my car.
I try not to think about what my normal used to mean because it'll only depress me.
I try not to think about what my normal used to mean because it'll only depress me.
Normal????? Do you mean we are not normal????? omg hahah
Sorry, just couldn't resist!
I forge on as if I'm completely (whateverone else says is...) normal.
Sorry, just couldn't resist!
I forge on as if I'm completely (whateverone else says is...) normal.
I've long believed that "Normal" is one of the settings on a clothes dryer, nothing more. As soon as we settle in to a groove, it begins to feel like a rut, or we hit a bump that bounces us out if it. I'm not talking specifically about illness, though that can be a big part of it. Life always changes, and the sooner we learn that, the more content we can be with today. Jesus told us not to fret about tomorrow, because today has enough trouble of its' own.
So from reading your answers, I want to ask - do you ever intentionally work at being 'normal' or do you just let it happen?
Basically all sorts of crafts, from wire & crystal jewelry, to Orgone items, soap making,rain sticks, crystal grid boards,paper beaded items,hemp jewelry,personalized photo bottles, epoxy coated items,leather purses, sewing everything on a sewing machine, crocheting just about any and every type of craft possible. When I have down times I keep busy doing something :) I bought knitting needles this fall and hope to learn that too
Well I have been a little more naughty about trying to be normal, more of the denial route. As some of you know, I quit taking my meds. This whole MS thing has become overwhelming. I quit answering and returning calls from the pharmacy and Avonex and the Avonex nurse and finally the nurse from my neurologist's office. Today I finally took the call. I told her, that I am not taking my meds, I am not planning on taking my meds, and I can't handle talking my meds right now. I have a lot of stress and other things going on in my life right now and it's not just something that I can deal with right now, so I'm not going to.
Right now I am focused on getting my left side stronger, continuing to lose weight, and focus on my son's hockey and hopefully get back on hockey skates myself. It's been about 4 years since I have been able to skate. I'm just going to focus on being healthier and more active.
Right now I am focused on getting my left side stronger, continuing to lose weight, and focus on my son's hockey and hopefully get back on hockey skates myself. It's been about 4 years since I have been able to skate. I'm just going to focus on being healthier and more active.
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