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.
What type of crafts do you enjoy, StarchildSue? I've dablled in many types over the years. I took up knitting last summer and find that very therapeutic - everyone got scarves for Christmas. Next year they can have hats. :-)
Awesome question !!! Love the idea having a " Monthly Question"
Well this is something I have been working on very much so this past week!
All testing and nervousness about possible DX can be stressful for me.
The way I have been putting more forward and less focus of the unknown is through Daily Yoga and Meditation. With the meditation part of my healing I have done a 15 minute Health healing mediation and another type of relaxation. This helps me by releasing any negativity and consuming myself with harmony, and feeding my cells through breathe.
The local offices are up for election in April, eight to years ago I ran for a City seat and lost by 23 votes, I did help a friend become Mayor at the time so he appointed my to the local Plan Commission, and I would become Chairman running the meetings.
I'm still on the Commission as just Vice Chairman now by choice and enjoy watching those running in the up coming election eat other alive..
Since I have inside knowledge when they make their speeches and promise things to Voters I just want to roll my eyes- I'm sure its the same on the State & Federal level.
Ahh a great question! How to be "normal!" I guess I have to say for me it is my kids. I have been undercontrol pretty well for the last year as far as my MS goes ..... at least I know what to expect and just cope. My kids however NEED my attention and NEED me to be mom no matter what. SO with that I do not spend my time reading every MS article or analizing my health. I must be ther for my kids...so I eat healthy, exercise when I can, daily copaxone shot at bed time......and march on a mom. I never forget that I have MS or try to hide it but I live every moment as I can. I truly hope and pray that anyone with MS can find those things that make them feel "normal". Bless me family for doing that for me!
The cuppa is now all over the floor lol but i'm settled in for our, round the table chitt chat :o)
In our family, "normal" just isn't the usual normal most people think of, we don't or cant do normal anyway lol so this isn't an easy question for me to get my head around. Thinking of things that I still do that's normal for me, is pretty much what I've always done. I'd be lying if I said I didn't have to compensate for my issues in someway and I have had to give up more than a few things because there just wasn't a way to get around those issues, it's just the way it is and 'finding another way' is pretty normal for me to do.
Some of you will know that my kids and brothers have Asperger's and for the last 20 odd yrs, I've worked or volunteered as an advocate for families and was actively involved with working with children with disabilities. Thats always going to be a passion of mine and even though i'm not still in the thick of it, I still keep upto date with all the research, therapy etc. because its always going to be important to us.
I home school our youngest, a gifted Aspie so the topics we get into are not the norm, I seriously dont know what he's talking about half the time so he's really home schooling him self, whilst i'm scrambling to keep up with him. Got to say, laughing is pretty normal for me and we end up laughing about the strangest things, so my days are hardly ever not a comedy festival of sorts hmmmm anyone got a translator for a 15yr old doing uni chemistry and physics? lol
This may sound trivial to some but i cook dinner, or at least have it prepared and ready but for awhile there it was beyond me, so it is one of the more normal normal things I'm getting to do lol no ones complaining so i've not poisoned anyone yet, give me time......
I am one of the lucky ones. My MS does not impede my mobility. I have the good fortune to lead my life with MS always running in the background. The invisible symptoms that characterize my MS sometimes let me pretend that I don't have it :-)
Unfortunately, I have lost "normal". I miss it. My new normal has become life of a disabled person. After so many years of teaching special needs students, I thought I had a handle on disability. Now that it has become my reality I realize how all consuming it is. I have so much difficulty walking that going places and doing things has become fairly limited. I had to retire from work on disability 3 years ago.
I now spend time every day working out. Fitness has become a huge part of my day. I am blessed to have a loving supportive husband of 33 years, 2 wonderful sons (in their 20's) and many supportive friends :)
Lu, I am sorry to be such a downer. I guess it's just one of those days.
I too have lost the concept of normal over the past few years, due in large part to health issues not related to MS, but MS has taken its toll too. In recent weeks I've been thinking about this a lot, and decided I didn't like the direction things were taking, so I'm instituting some changes. Trying to make this a little at a time, as I have a tendency to bite off more than I can chew, even when I think I'm compensating for that.
Since for the first time in 9 or 10 months I'm not constantly coughing, huffing and puffing, it's time to go back to the gym. Today I went to a Pilates class, the first in several years. I used to be decent at Pilates, not good, but passable. Today I was awful. I'm so out of shape. The class was one hour long and I lasted 40 minutes, doing only the roughest approximation of what the others were doing, and very badly. But that's okay, maybe next time I'll last 45 minutes. I won't ever be good, given that my balance is way off and that I tend to get muscle cramps, though who cares?
I'm resuscitating my social life, joining a book club, and otherwise trying to be more normal, little by little. Several other possibilities on the horizon, which I may dabble in till I get the right mix. My normal me is much happier!
I keep a routine and push myself to stick with it. Of course there are times the MS pushes back. I do my best to walk almost everyday for an hour, not only is it good exercise but it is also time to think and enjoy the fresh air. I am a mom of three and try hard to do all the normal mom stuff, they help me to make the best of the day.
I am no longer able to work but I keep in contact with my co-workers and meet them for lunch once a month. I limit the update on my health to just a few minutes so I can enjoy hearing about their lives and work, just like the real normal days.
I can't go a day without remembering I have ms, but I certainly can focus my energy on more positive things, like my family and friends. :-)
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.
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
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.
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.
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!
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.
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 :-)
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.
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.
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,
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."
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.
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.
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.
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.
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