I am really feeling down and blue. I've had this crap for 5 years, and have been able to put on a pretty good "front" at work. Everyone I work with knows I pee all the time, but other than that, I've been able to make it through work with really no symptoms encroaching into my performance. The fatigue and the shaky legs are really coming into their own as of late, and I am scared shitless. I'm also not thinking clearly, but that could just be my preoccupation with my symptoms. I could always do two stairs at a time and run around work like a spaz, but I think I may have to finally accept this disease AND I DON'T WANT TO. It just pisses me off. Not from a why me place, but it just does anyway.
I guess I'm going to have to start meditating and doing yoga for a while because I'm stresses about it! AAAARRRGGGH!
I could really use some virtual hugs.
Lew
Feeling down
A virtual hug from one symptoms pre-occupied and scared s***less person with MS to another: one thing that always cheers me up is the thought that at least with MS there is always hope-- very seldom is anything final. With lots of spinal cord injuries, once you are in a wheelchair that's it-- not so with MS. Flare-ups and symptoms come and go and so does disability, and that's just the natural course of the desease, before we even get into treatments, new and old, which can be effective as well. So put on that "Annie" soundtrack and do a few spinal twists-- my yoga guy says they do amazing things for your CNS-- and I choose to believe him! 
Hi Lew
I am sending you lots of hugs. I know that we all have days like this. MS sucks.
I some times forget how much hope there is and get really sad too. That't why I come here and read the awsome posts about new drug trials. Yoga and meditation are great. I hope that they help. Hang in there...THERE WILL BE HELP ON THE WAY VERY SOON.
NN
I am sending you lots of hugs. I know that we all have days like this. MS sucks.
I some times forget how much hope there is and get really sad too. That't why I come here and read the awsome posts about new drug trials. Yoga and meditation are great. I hope that they help. Hang in there...THERE WILL BE HELP ON THE WAY VERY SOON.
NN
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REDHAIRANDTEMPER
- Family Elder
- Posts: 285
- Joined: Mon Nov 07, 2005 3:00 pm
- Location: wisconsin
- Contact:
Hi Loobie your job is so important to everything, your mental and physical being. Go as long as you can and try not to worry about others seeing you miss a step or not take the stairs like you normally do. I found that once my co workers knew about the ms it was so much easier for me. You seem to use a lot of energy trying to hide it and that energy can be used in a much better way, towards the end of my work people would wait at the top of the stairs to offer their shoulder to me for the trip down. I never realized how work or not working could have such an affect on a person, I am not going to say it will get better soon but that’s just me so just take where you are right now and live it…
Work stress
Lew:
I’m not so good at hugs. I do know exactly what your going thru at work though. I did the same thing. I was so scared, I probably stopped before I absolutely had to. It’s been 5 years since I stopped and I still have problems accepting it. You have to face it long enough to plan, especially if it’s getting worse. I can tell you about my experience, if you ever need that kind of info send me a pm. This site has great people, all with different perspectives and experiences. So, your not alone. (BTW it really pisses me off too). Hang in there, start taking one stair step at a time and conserve energy.
Mick B
I’m not so good at hugs. I do know exactly what your going thru at work though. I did the same thing. I was so scared, I probably stopped before I absolutely had to. It’s been 5 years since I stopped and I still have problems accepting it. You have to face it long enough to plan, especially if it’s getting worse. I can tell you about my experience, if you ever need that kind of info send me a pm. This site has great people, all with different perspectives and experiences. So, your not alone. (BTW it really pisses me off too). Hang in there, start taking one stair step at a time and conserve energy.
Mick B
Lew,
Oh my word, are you in my head today??? On my way home this evening I thought almost the same thing you posted. I was actually thinking of posting something to get people's feedback on how people cope with working and MS. I too feel that I have about achieved maximum capacity and collapse in a heap at the end of the day so exhausted I'm almost unable to walk in the house. Every step is like getting tazed. I almost have to force myself to put one foot in front of the other because I know it's going to hurt.
I wonder if I am shooting myself in the foot by making myself go to work? I wonder if because I keep on keeping on I'll go to far and end up worse off than I already am? I wonder how I am going to make it to work in the winter if I can't feel the steering wheel slip in the snow and ice? Is it just me or does heat NOT bother you but rather the cold makes my symptoms worse? I did alright all summer but the colder it gets the more I tingle and numb up?
Hang in there...your not alone.
Peace, V
Oh my word, are you in my head today??? On my way home this evening I thought almost the same thing you posted. I was actually thinking of posting something to get people's feedback on how people cope with working and MS. I too feel that I have about achieved maximum capacity and collapse in a heap at the end of the day so exhausted I'm almost unable to walk in the house. Every step is like getting tazed. I almost have to force myself to put one foot in front of the other because I know it's going to hurt.
I wonder if I am shooting myself in the foot by making myself go to work? I wonder if because I keep on keeping on I'll go to far and end up worse off than I already am? I wonder how I am going to make it to work in the winter if I can't feel the steering wheel slip in the snow and ice? Is it just me or does heat NOT bother you but rather the cold makes my symptoms worse? I did alright all summer but the colder it gets the more I tingle and numb up?
Hang in there...your not alone.
Peace, V
Re: Feeling down
Don't be afraid to look at prescriptions to help with that. Uroxatral has made that symptom disappear for me.Loobie wrote: Everyone I work with knows I pee all the time, but other than that, I've been able to make it through work with really no symptoms encroaching into my performance.
Re: Feeling down
I found that Rosalind Joffe's 7 Habits sums up good practice for how people with chronic conditions should behave at work. I have it tacked onto my office wall! Hope it helps you to.Loobie wrote:.... I've had this crap for 5 years, and have been able to put on a pretty good "front" at work. Everyone I work with knows I pee all the time, but other than that, I've been able to make it through work with really no symptoms encroaching into my performance. ...
http://www.cicoach.com/7Habits.pdf
John
I am what I am
I am what I am
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MISunshine
- Getting to Know You...
- Posts: 11
- Joined: Sat Oct 07, 2006 2:00 pm
- Location: Near a Water Tower that says Welcome to Nowhere
Lew,
Are you still coming to Michigan?
Being the same age group as you, with the same illness, and wanting to still take the stairs two at a time in high heels.....now just wearing them sneakers and when I wear my cowboy boots think I got "heels' on...lol.
We all know it comes and goes in RRMS what we never know is what will stay and that is what most of us fear the worst. The other thing is aging, yeah we're only 40ish so we shouldn't be slowing down yet?, should we?...We think we will always be able to bench press that weight. In August I couldnt walk, In October I used a cane, Today I used my legs to move some Lozier shelving in my garage because I'll be darned if I let that car sit out in the snow this year...I was astonished that I could do it, but I was hurting tonight! Being married to a man 11 years my senior keeps me optimistic, because he lets me know that he can't do things he could do ten years ago either. I keep reminding him he was doing backflips on the trampoline then! I jump now and pee my pants....lol...sorry more info than needed.
Keep going. Keep active. Use your mind! But before you tell employers or fellow employees, read your company manual, policies, etc. There is still discrimination in the work place! Whatever you do, don't just accept MS, meet it head on, realize that the stress does play an important role in how you feel and maybe meditating is the way to go, I know you eat right and exercise so just remember we still have the Tovaxin trial!
Anyway, hope you get this <<<HUG>>> and hope your family can meet up with mine, soon! Take Care
---MISunshine
Are you still coming to Michigan?
Being the same age group as you, with the same illness, and wanting to still take the stairs two at a time in high heels.....now just wearing them sneakers and when I wear my cowboy boots think I got "heels' on...lol.
We all know it comes and goes in RRMS what we never know is what will stay and that is what most of us fear the worst. The other thing is aging, yeah we're only 40ish so we shouldn't be slowing down yet?, should we?...We think we will always be able to bench press that weight. In August I couldnt walk, In October I used a cane, Today I used my legs to move some Lozier shelving in my garage because I'll be darned if I let that car sit out in the snow this year...I was astonished that I could do it, but I was hurting tonight! Being married to a man 11 years my senior keeps me optimistic, because he lets me know that he can't do things he could do ten years ago either. I keep reminding him he was doing backflips on the trampoline then! I jump now and pee my pants....lol...sorry more info than needed.
Keep going. Keep active. Use your mind! But before you tell employers or fellow employees, read your company manual, policies, etc. There is still discrimination in the work place! Whatever you do, don't just accept MS, meet it head on, realize that the stress does play an important role in how you feel and maybe meditating is the way to go, I know you eat right and exercise so just remember we still have the Tovaxin trial!
Anyway, hope you get this <<<HUG>>> and hope your family can meet up with mine, soon! Take Care
---MISunshine
every single day thousands of extremely smart folks are figuring out how to purge the world of this condition. Remember that.
I feel very strongly that you will look back one day and say to your friends, "remember when I had MS?"
Until then, keep up the fight and enjoy every day. MS is one of the most challenging medical conditions because there's a strong psychological fight as well as physical-- and as a result, the people who have it are generally some of the most phenomenal in the entire world.
I feel very strongly that you will look back one day and say to your friends, "remember when I had MS?"
Until then, keep up the fight and enjoy every day. MS is one of the most challenging medical conditions because there's a strong psychological fight as well as physical-- and as a result, the people who have it are generally some of the most phenomenal in the entire world.
Disclaimer: Any information you find on this site should not be considered medical advice. All decisions should be made with the consent of your doctor, otherwise you are at your own risk.
Re: Feeling down
Hi Lew,Loobie wrote: I think I may have to finally accept this disease AND I DON'T WANT TO. It just pisses me off. Not from a why me place, but it just does anyway.
First, you're not alone. Come here vent, we all understand. We are all here to support each other through thick and thin.
Second, if you need professional help, go for it. I am even considering a psychologist to speak with concerning my struggle with MS, my job, my wife and my life.
Third, make sure you take 4,000 IUs of vitamin D along with 2g of pharmaceutical grade Omega-3 fish oils with your dinner. This should help your mood. Make sure you get at least 7 hours of sleep every night.
Fourth, if you really see your symptoms progressing, try the antibiotic protocols discussed in these forums. Along with the right diet and supplements (make sure you do not take abx with calcium and vitamin D).
Finally, go see the movie Borat for a good laugh. It is important to get your mind off of MS and get on with life.
cheers,
beyondms
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Loobie
- Family Elder
- Posts: 2198
- Joined: Mon Sep 11, 2006 2:00 pm
- Location: Dayton, Ohio USA
- Contact:
Sheshamesh! I love Borat. You are right. Anything to take your mind off of it for a while. I have been taking 2000 IU of D3, but tonite I will take 4000. Thank you for the advice.
As for the sleep thing; I will give it hell, but I take Lunesta to try and get 4 or 5 hours a night. I haven't slept worth a damn since I first started showing symptoms. I'll wake up at 2:00 am with absolutely nothing on my mind, but my legs spasming like all get out, and then I'm awake for about an hour. Then it starts and goes like that until I get up at 6:00 for work. I go to bed at 10:00am almost every night, but sleep just eludes me with this disease; even when I'm completely exhausted.
I've never done the fish oil, but I am going to stop on the way home and try to find it. If I took every supplement everybody has recommended to me since this all began, I wouldn't have to eat, but the D3 and fish oil are the two most recommended, so I'm going to give it a whirl.
Thank you.
As for the sleep thing; I will give it hell, but I take Lunesta to try and get 4 or 5 hours a night. I haven't slept worth a damn since I first started showing symptoms. I'll wake up at 2:00 am with absolutely nothing on my mind, but my legs spasming like all get out, and then I'm awake for about an hour. Then it starts and goes like that until I get up at 6:00 for work. I go to bed at 10:00am almost every night, but sleep just eludes me with this disease; even when I'm completely exhausted.
I've never done the fish oil, but I am going to stop on the way home and try to find it. If I took every supplement everybody has recommended to me since this all began, I wouldn't have to eat, but the D3 and fish oil are the two most recommended, so I'm going to give it a whirl.
Thank you.