Thoughts....

If it's on your mind and it has to do with multiple sclerosis in any way, post it here.

Thoughts....

Postby viper498 » Thu Nov 16, 2006 1:41 pm

You know, after reading Loobies post, it really scares the crap out of me. I live every day in denial, resisting the fact that I may progress. I think to my self.... I haven't had any problems or symptoms of MS since June '05 when I had my first and only symptom (CIS). Maybe it was something else?? Maybe I don't have MS? Maybe I will be OK? More and more I read of those who were in similar situations, and then all of a suddden 4, 5, 10 years down the road they are fighting MS on a daily basis. This just brings me back to the fear. I guess its a good wake up call for me though. In the back of my mind I always hold out the possibility for disability, but these posts make it a lot more real.

I sure hope they figure out what MS is, and how to treat it. Not just for me, but for everyone who has their lives affected by this mysterious, and cruel disease.

Brock
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Postby pualani » Thu Nov 16, 2006 2:49 pm

I feel the same way you do. I was diagnosed with MS on October 31, 2006, so I haven't had a really long time to let it sink in. On top of that there are other problems and it's really frustrating. My only symptom is surface numbness in my legs and I'm actually scared that it won't go away. I haven't even thought about what is going to happen down the road when I get older. Either way, we have to keep going, living lives to our fullest and not worrying about what may happen, just what is happening now. :wink:
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Postby Loobie » Thu Nov 16, 2006 3:08 pm

I hear you brother. I was a long time before I had anything that really slowed me down. I am a lifelong runner and have been running 3-5 miles a day since the MS diagnosis. Just in the last year, and especially lately, I get about a mile in and I am running literally like it's uphill on flat ground. By the time I'm finished, the only part of me that feels satisfied is that I just completed it. I use to get very euphoric and pumped up after a run and feel very energized. Now I feel like I ran a full marathon.

The thing we have to do is learn how to define ourselves again. I had no idea how much I defined myself by the physical, and I had no idea how hard it is to try and redefine yourself period so that you can feel good about yourself again. I'll say a prayer for you bro' that you don't progress anymore at all. Hang in there.

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Postby robbie » Thu Nov 16, 2006 6:46 pm

Viper, just enjoy your days now only time will tell for all of us. I went for 8 years with hardly any symptoms I felt like they made a mistake and I didn’t have ms then it all came crashing down. I ate the same things and did the same things for those years as I do now so I did nothing to bring it on so whatever, only time will tell. If you do get worse you just have to find a way to deal with it, the milder the symptoms the easier it is the worse they are the harder. Maybe you will be one of the lucky ones and never get worse or maybe a new drug will come out for you, or maybe, maybe, maybe, maybe ...
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Postby sh8un » Thu Nov 16, 2006 11:33 pm

loobie
I really liked what you said about redefining ourselves. So often I feel that I have lost who I was. I am so scared because I feel as though I don't know this person who crys all the time. This person that can not get MS out of her head. I need to sit down and rethink who I am now. I have changed forever. I have to know what that means. It's just that it took me so long to get to where I am and now...I have to get there again.
NN
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Postby Loobie » Fri Nov 17, 2006 6:47 am

NN,

I know what you mean. I was a successful high school athlete (wrestling and hockey) and have carried a high level of physical conditioning ever since. After school I really got into racquetball and played that at a national tournament level. I actually "discovered" my MS on the racquetball court. I was playing a match and all of the sudden I was looking through pea soup fog. I freaked since my vision had always been 20/20. I took a time out and since I was so sweaty I cooled off fast and my eyesight came back. I went back in, started playing, my eyes went out and I withdrew from the tournament scared to death (no thoughts of MS at this time, but thinking I'm going blind).

What's bad about all of this is how much of my self esteem was attributable to my success on the playing fields of adulthood. Between golf and racquetball, I was probably more active at sports at 33 years old then in high school. It doesn't seem that you would take your self esteem from such a trivial place when you are not a professional athlete, but for me it gave me more esteem that carried over into my level of confidence overall and into the workplace. For quite some time I have felt like I've lost my Mojo.

Our psyche's our tied into so many different things that it's not funny. In my critical parent mind, I think "you are successful professionally, have a good marriage, you don't need anything else". That may be true, but all things are relative, and I have to figure out how to turn off that part of me that gets all screwed up about my physical self going down the tubes.

I think we all face it with aging, but with aging it is a "normal cycle of life" in that it happens to everyone where MS does not. It is just another challenge, but even with all my health intact, the thing I was always looking for was piece of mind, it's just a lot more challenging now. Going from the 40 year old that looks and acts 25 to the 40 year old that may look younger but sure doesn't feel it, or even see it in the mirror even though that hasn't changed much, is a lot harder than I expected. I think the thing I need to do more than anything is to not withdraw. The thing I have going for me are great friends and family, so I don't think they would let me crawl in a shell even if I tried.

Learning how to love your new self is not going to be easy, but there are people who do this admirably, and damnit, I plan to be one of them. I think the biggest challenge is that just when you get used to a set of symptoms, here come some more so not only are you not who you planned on being, but it's always changing. All I can say is that I'm glad for boards like this where we can share and in the words of Linda Richmond "Talk amongst ourselves"; we can even get a little pheclempt.

Lew
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Postby Chris55 » Fri Nov 17, 2006 8:08 am

I am a parent of a daughter with MS. I post here often. I guess the one thing I refuse to do is give up hope! I have always been a fighter and I jumped into this fight with both feet! For me, the three most critical aspects of this disease are to (1) take responsibility for your illness and (2) educate, educate, educate yourselves and (3) be willing to "step outside the box". By taking responsibility, I mean do not become a "child" of your treating physicians. Recognize s/he is limited by the "accepted" treatment protocols of the medical industry. By educate, I mean really understand what your medical/non-medical options are and question, question, question! Be willing to step outside the box because I can guarantee you--except in very isolated incidences--your doctor won't.

I have written about a protocol my daughter just tried. She made her decision based on success stories of people that she knew. It was very affordable, she could stay on all of her prescribed MS meds, and most importantly, it could do no harm. Right now, she is doing amazingly well! Her confidence in her future is stunning! I am being more conservative. For me, time is the "proof in the pudding". The next step will be her annual MRI (in February).

The beauty of all of this is she knows what the MS meds will do for her. They are always an option. She is planning on getting pregnant and had decided to stop her MS meds before getting pregnant. All in all, she was not taking any big risks. Just a "chance".

I have been to many, many MS sites. This one, by far, has been the best! It is burtally honest and, best of all, does not receive support from any of the MS drug companies, That makes it Honest!

As always, my heart is with ALL of you wonderul people. I continue to pray for all of us every day! God bless--Chris
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Postby viper498 » Fri Nov 17, 2006 8:14 am

I really appreciate everyones perspective on this. Thank you! This website is definitely a great resource.
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Postby REDHAIRANDTEMPER » Fri Nov 17, 2006 9:03 am

viper,
keep your head up and try and stay postive...i have the same thing happen with me all the time.....i am okay except for the no feeling in my leg and tingling in my arm....got use to that...go fine for a few days then get the crap scaried out of me cause i cant move right away out of bed...thats when it hits me the most...i mean i have kids in scouts...i try and do as much as possible with them and thier scouting...but there are those nites when i am soooo tired.i dont want to go to their things and just want to go to bed and not move.....they notice it but i go anyways....its hard and with the memory lose also..that really worries me...however i just take one day at a time and wake up hoping i am going to have a good day.....today doing okay....so amhappy with that right now....but keep your head up..and smile

chris
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Postby connieb » Fri Nov 17, 2006 11:39 am

For me, the biggest problem psychologically has been my inability to stop thinking about MS 24 hors a day, 7 days a week. There is a split second right after I wake up when I think everything is OK with the world, and then I remember and start doing the body check to make sure it's all still functioning. From then on, my every thought, my every interaction, happens through the prism of "I have MS': I'll be buying a loaf of bread and thinking-- 'this is not me doing it, it's a person with MS and I don't really know that person.' I will see someone I haven't seen since my diagnosis, and my first thought is "oh, but you don't know that the me you used to know is dead and this is a ghost you are looking at." Not logical, not healthy any of it but I don't know how to stop it.
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Postby Loobie » Fri Nov 17, 2006 2:18 pm

Connie,

There is no need for you to feel that way. You are still in there. Give yourself a mental vacation and just say "I'm not dealing with this today" and go do something social with friends. Getting out and participating usually is the closest to "normal" as I feel, and it usually feels great. Liberate yourself from the preoccupation by going into a bit of denial. Denial has really received a bad rap because of all the attention it has gotten in terms of treating addictions. Denial is not always a bad thing. I don't want to deal with this crap 24/7, so if I just have to go into denial, then so be it. I'll get snatched out of it eventually when things flair up but, at least for now, it's not going anywhere. It will still be there even if you don't do a physical inventory every morning. Keep your chin up. You are not MS with a person attached to it, you are a PERSON with MS.
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Postby sh8un » Fri Nov 17, 2006 3:00 pm

Arrrrrrrgh. i posted in here earlier and now it's not here. Anyways...hopefully I didn't post some other place accidentally.
Connie,
I was just saying that I feel the same as you do. It is so hard to get my mind off it. I have a hard time...well...the truth is that I have not even called my close friends to let them know about my diagnosis. I feel so different than the person that I was. I just feel lost all the time and I don't know how to get out of this cycle. I know what we are doing is not healthy. far from it. I think Loobie knows what he is talking about. I am trying to get on with my life but it's just so hard right now. I will keep trying though. Hopefully something will click in my head soon. Just wanted to let you know that you are not alone in how feel...and now we can help each other feel better. Hopefully one of us will come up with something.
Take care and get out more. That's what I need to do.
NN
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Postby Vidalia » Fri Nov 17, 2006 4:30 pm

This first words out of my mouth when the Dr told me I had MS was "I don't have time for this shit." His nurse told me she will always remember me saying that. I don't even know why I did to be honest with you....

As I was reading this thread, this is what went through my mind......
:evil: I'm angry, VERY angry.
:?: What did I do to deserve this???
:?: What if this is really NOT MS and I'm putting this needle in my leg every week of chemicals that might kill me???
:arrow: Denial, you betcha!!
:idea: Redefine myself? I don't want to. I am who I am. I like me. I realize that not everyone does but they wouldn't even if I didn't have MS so no biggie there.
:x I too am guilty of almost a 24/7 obsession with the "what if" thought process of MS. I've seen it at it's extreme. I don't want to go there. I will not go there. I don't have the courage, faith, or desire to go there.
:cry: I'm not optimistic about a cure in my lifetime. Not at all. I don't believe in filling my body with chemicals, I'm not a better living through eating sea weed person, I don't believe anything I hear and only half what I see.

MS has taken my ability to feel (sensory) and my ability to FEEL (emotionally). Somedays I just sit and wait for the other shoe to drop. I don't know how I'll react. Somedays I end that thought with I won't care either.

Why get on with my life if my life isn't going anywhere?????? Why ask why when it's all for nothing???

These are things that roll around in my head. Especially on Fridays. Injection day. Wee Haw my (use to be) favorite night of the week). So excuse my rant...altered state of perception moment brought to you by the letter "A"

V
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Postby Grumpster » Fri Nov 17, 2006 4:43 pm

I agree that we need to try and redefine who we are. I have always been very active surfing, snowboarding, biking, hiking, working out etc. Now i do almost none of those things. My balance is off, my strentgth is not there and when I do much physical activity at all I get dizzy and my vision gets fuzzy / blurry. My work is also physically demanding at times because I inspect manufacturing facilities. I was so unaware how much my work and physical activity defined who I was. Now I am faced with potentially losing my job and also not being able to do anything physical. I am only 37 as of this month. I feel like a completely different person and I do not like the person I have become. It is so hard to redefine yourself into what is left. If my current rate of progression continues I feel like I have 5 maybe 10 years left of life worth living in me. Am I supposed to redefine my self image into a unemployed person who can not do anything physically? I guess so. So then what? I used to get pleasure from my work and my leisure activities. I have not felt good in about a year and I do not really get any pleasure out of life anymore. Is quantity better than quality? I think maybe not. Maybe my quality time has passed. (yes I am depressed)

I feel kinda like a whiner because I know there are many with MS who would pay to be in my situation, but I am feeling like I am at the end of my rope. I discussed redefining who I am with my shrink last month, but I just can not see what I am to redefine myself as.

I am glad that this forum is here because I can not even discuss my true feelings with my wife. When I do she gets scared and it does not help, so I just stay quiet and keep doing the things society says I should do... work, save money, etc. I am scared about the future and I have been suicidal at times (not right now). Hopefully I can get a grip and redefine myself soon...


G
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Postby Grumpster » Fri Nov 17, 2006 4:47 pm

Vidalia -

I hear you loud and clear. I feel then same way. I take Rebif so 3xs a week I look forward to that dose of BS. I think it is all a bunch of crap anyway.

try to keep your head up. I will try too.

Happy Friday!
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