life with ms question

A forum to talk about the general challenges of daily life with MS.

life with ms question

Postby robbie » Fri Oct 30, 2009 1:31 pm

when u slowly see everything that u knew life to be taken from you do you just deal with it. is there somthing inside us that kicks in and shows us how to be happy without the physical aspect of do people in bad shape deal with what your life has become?i'm not a religious man but is that the answer finding god?. i just know i cannot live out the rest of my years being like this. am i missing something?tell me how to do this.
Had ms for 24 years now.
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Postby Loobie » Fri Oct 30, 2009 2:48 pm

The only attempt I'll even try to make is if it were even POSSIBLE to accept it. I used to think it was, now I just don't know. I don't know how I would do at the acceptance once I became chair bound. How do you NOT notice your MS every time you try to move, pee, shit, anything. I was starting to think I was getting consumed by it and then I realized that every single step I take, every move of the head, it just reminds you that all is not well and you'd better stop what you're doing or it's going to crank up. And then after years of it, it just wears you down, it's relentless. I don't know Rob. I don't know if anyone knows. When I look at someone like Christopher Reeves and the way he at least appeared I wonder the same thing; what the hell am I missing that I can't be like that? Is it money? I doubt it. Is it love? I got that and still have a harder and harder time accepting my disability, ie, being OK with it.

I think that probably helped about as much as a kick in the nuts but I just don't know. I just wanted you to know that you are not alone in feeling that way. I don't know how Dom does it either. It took him like all day one time not long ago to post a couple paragraphs. How the hell does he do it? It must be some kind of eternal optimism that I just didn't get the memo on. Part of it may be how much I indeed loved my life before. That can't be it either because it's not like Superman wasn't living an idyllic life before his accident. It's the cruelest disease of all in my opinion. Takes it all away slowly and leaves you around to watch. I know this isn't probably what you were looking for and I about deleted it, but I wanted you to know you 'ain't crazy for feeling like you do.
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Postby robbie » Sat Oct 31, 2009 9:02 am

thanks Lew, these antibiotics are really making me feel like shit. gotta stick with it and hope those movements i first had come back.there has to be something to this.were all here hoping and most doctors would laugh at us for thinking we know something they don't. i just get really down thinkig of the choices we have. thanks again
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Postby patientx » Sat Oct 31, 2009 3:42 pm

robbie wrote:were all here hoping and most doctors would laugh at us for thinking we know something they don't. i just get really down thinkig of the choices we have. thanks again

If nothing else, don't let this deter you from trying something. If those doctors were so smart, they would have the answers for MS by now.
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Postby Bubba » Sat Oct 31, 2009 8:05 pm

We can put a man on the moon....But, they cant figure this sh!t out. :roll:
I am just trying to maintain hope. A little piece of that hope disappears everyday. Hope and Faith...What else is there??? :(
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Postby scoobyjude » Sun Nov 01, 2009 2:35 pm

Hope and Faith...What else is there???

Bubba, I ask myself this question everyday....
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Postby Wonderfulworld » Mon Nov 02, 2009 8:55 am

Robbie I don't know.
I got great example from my Grandad - when he couldn't walk anymore he used to enjoy his beer at home, taught me how to pour it perfectly for him (I was a teenager!), and read out the form for the horses when his eyes went too!
But MS is much more insidious. It takes so much more, so much earlier.
It is an evil disease. Anyone of those eejits who say they are thankful for the lessons learned from it haven't experienced it at full throttle. It stinks, plain and simple.
I wish I could give you some advice but I can't.
We are all here for you though.
<Big Hug>
Concussus Resurgo
RR-MS dx 1998 and Coeliac dx 2003
Tecfidera, Cymbalta, Baclofen.
EPO, Fish Oils, Vitamin D3 2000 IU, Magnesium, Multivitamin/mineral, Co-Enzyme Q10, Probiotics, Milk Thistle, Melatonin.
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Postby RedSonja » Tue Nov 03, 2009 2:45 am

One day at a time, kid. You just get up and carry on.

After a while you can accept that you will not be taking up mountain climbing now. But you will notice that you are still the same person, just a bit wobblier. if you are a nice person with humour and patience you can handle this and stay pleasant. If you are a misery guts you now have something to moan about.

If you are lucky you have a slow form of MS. It doesn't get that bad that fast. But get on and do the things you may not be able to do later. I remodelled my garden and will be building a large woodshed soon. I have to admit there are things I can no longer do. I arranged for a firm to come and refelt the garage roof. Forget working on ladders (actually I will prune trees and so on, though my husband will tell me off if he sees me). Get people to do the heavy stuff for you. Even if you can do it, it takes away from your energy reserves, and you need them to do what matters. If you do heavy work or long hikes, plan the rest in afterwards.

Cut out the dead wood. Don't do the things that don't need doing or which you don't want to do. I gave up the PTA, such a relief, and they don't miss me one bit. Give up seeing people who make you feel bad.

You can do this. We all can.
Bibo ergo sum
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Postby happytown » Sun May 30, 2010 6:53 pm

Im a little late posting but I deal with my MS in several ways. I can tell you that prayer has helped so much. I can honestly tell you God has been with me the whole time. I accepted it from the moment I got it. Life takes you places you didnt plan to be. Accepting it does not mean giving up. For me it means that finally we know what I have, what can I do to stay on top of it. I exercise at home, have a Physical Therapist, I go to two doctors, supplements/vitamins based on what bloodtests show I am low on, keeping my whole life super organized so if I need help with the next exacerbation it won't be crazy. I look for the good in each day and there are so many things I took for granted before. When you have been that sick, you look at life differently. I look at what I have and not at what I dont. I have had to adjust some things in my life but I am very much at peace and wish everyone could have that peace. That doesnt mean I dont have depressive or frustrating days. I sometimes am not as positive on days like that. It may sound crazy, but I don't worry about my MS as much as I worry about the person I love. They have it and I hate it. MS is an awful disease and it is hard to cope sometimes. Thats why I am so glad to read what you guys share. Its a great place!
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Postby harry1 » Tue Jul 06, 2010 1:20 pm

The internet has been my savior with this disease.

I've been out of work and on SSDI since Jan 2008 as my feet and ankles are paralysed and at first it drove me batty not to go to work and be with my co workers or go to the gym at nite or bowling on Sat nite and going to football games etc. as i miss just being normal again when i had my feet.

The internet allows me to read forums like this one here along with other neural diseases to constantly learn and research etc. I can read news papers (50 from any city, i read all my science magazines online, i listen to internet radio stations i.e. classic rock 70's and 80's , i can listen to talk radio, i can watch tons of free movies on different sites, i read wikipedia all the time mostly about American history my passion) i can even shop online for groceries, clothes, furniture etc. i.e. Amazon, Overstock and Schwans home delivery, i can play Chess, Checkers, Pac Man, Space Invaders and other games sites on the net.

So until i'm cured to where i can go back to work and socialise and not need SSDI anymore the internet is my best friend and can sure help those of us who are housebound with these different neural diseases.

Any other questions just ask :D
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