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Old 11-11-2010, 05:41 AM   #1
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What now?

I just watched some online videos at a site linked to the MS Society web site and I sit here crying and feeling like a failure. These ten people all have this awful disease and they are thriving. Many had children and families. I sit here and battle for the really little elements of function. But I can still walk. I'm not in a wheelchair. I can still see. I think Rebif has halted a lot of terrible potentials since I've been on it. But these people took the challenges of living with MS and have succeeded, even triumphed.

I think I'm just not up to it. A couple years ago I tried to focus on hobbies, consciously DO something, find what I like to do, but just ended up here. I gave myself a focus, or so I thought. But today I am no more involved in life than I was then.

I too often give in to the fatigue. And to explain MS fatigue to someone who thinks you're "just tired" is almost impossible! I try to explain that it's not just being tired, working myself to exhaustion. Oh, to be exhausted from DOING! This crap starts almost as soon as I wake up. I understand that the synapses aren't firing properly, that my brain is not communicating seamlessly with my nerves... But that's almost a foreign language to someone who has never experienced it. And it's NOT something a little nap can cure!

How have ten years passed with... nothing? How can I rise to a challenge like this when I can sometimes barely rise from the bed? The only thing I HAVE accomplished is that I still vote. This year it was absentee, but it still counts. I can't seem to be involved in the world in any other way, but it is still important that I vote. I have a voice here in my little world.

But sometimes it really doesn't matter.

 
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Old 11-11-2010, 07:11 AM   #2
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Re: What now?

Lisa, The worst thing you can do is compare yourself to someone else with MS. You know this disease is different for all of us. If you know you are living your life to the best of your ability that's all that matters.

Length of time with the disease may or may not have a bearing on how well or how bad someone does. Believe it or not, the drugs for MS may or may not make a difference.

You could do everything your doctor or others tell you and still find those with MS doing better or worse than you.

Enjoy your life, family, friends and be the best you can be inspite of this disease. Try not to focus on the disease and what you can't do but focus on what you can do.

This sound so pollyanna
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Lisa_P (11-11-2010)
Old 11-11-2010, 08:23 AM   #3
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Re: What now?

Dwelling upon that which you cannot obtain or become only leads to depression and worsens your health. The MS videos are 10 of the good ones, how many were passed over? This is marketing and PR.

You state that you give in to fatigue. Fatigue comes in many ways. Sometimes we do not listen to our body signals and fatigue happens. You can do everything "right" and still have fatigue too.

MS, too, I believe, lowers your emotional threshold. I know it does for me. MS has brought me more empathy and as the disease has progressed, my emotions can run like a roller coaster. There are times when you need to escape to your little refuge. I love my family and friends, but I get to feeling bad enough that I retreat to my private space and "chill". You might need some self-pampering.

As Snoopy said, do not compare yourself to anyone else. Look in the mirror and see who you are. MS does not change us. Our essence is unaffected. MS will change us if we allow MS to dictate who we are.

There are hobbies that I used to enjoy, but no longer can. If you find yourself in such a predicament, learn a new hobby. When my right hand needed rehabilitation, I learned to crochet. No, I would never win any prizes for my efforts, but it was a new skill that I worked at. I could do it while confined to bed.

Perhaps you need to make a list of things you know you can do when you are feeling good. Rate the list to prioritize those things you can do when you are at your worst. Place tasks or goals before you that are obtainable based upon your current ability. Start slow and be willing to reverse course without punishing yourself. If you can do 5 tasks today, add 6 total for the following day. You may find that there are somethings on your list that require you to ask for help or you need to stop doing altogether.

I cannot use the walk behind mower any more. My son does that now. Our old ride-on mower was stolen and I replaced it with a zero-turn. I can now mow again because I do not need my feet to operate the mower. The same goes for my truck. Hand controls provide me with the means to freedom on the roads.

You are in my prayers.
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Old 11-11-2010, 09:07 AM   #4
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Re: What now?

My name is Ashley. I am 29 yrs old and I have had MS for 11 years. I was reading your post and I can't tell you how good it feels to hear what you have to say. A little history on me- I was diagnosed with ms when I was 18. I was always really healthy and I still was. My vision is the only reason I went to the doc. After the diagnoses I did all that I could do to pretend it wasn't there. It worked for a long time. No one knew my secret. I was doing hair one day ( as I had done daily for the last 7 yrs) and like a light switch my ms hit me hard and it hasn't let up since. I am not trying to feel bad for myself, I just want to do something about this. I have tried Copaxone, Rebif, and I am now on Tysabri. I know people that these meds have helped, and I think its great it is helping people, I am just not having any luck. I can barely walk, and the pain just emotionally wears on you, as you know. I am very curious about alternative treatments. I just had a baby, and although my ms did very well when I was pregnant, since I've had Max my ms has took a turn for the worst. I am not a negative person, but in my case I am just ready to do something about this. Any thoughts or suggestions would definately be apprieciated...

 
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Old 11-11-2010, 01:39 PM   #5
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Re: What now?

Lisa, I am not sure what your religious beliefs are and in fact, I can understand anyone questioning religion after something devastating happens .. but I am praying for you and I HOPE you have a support system and people who are helping you with all the things you mentioned. My heart goes out to you so much and I WISH I had a magic wand and could just cure the world of any darn problems.

Please reach out and stay involved with the people you love and who love you .. I HOPE that you will find some relief and peace soon ..

I hate to even say this, but until now .. I had not realized how much "I" take for granted the simple things in life, and I mean "simple" .. but a smile .. a touch .. and a hug or just an "I understand .... " can help a great deal. I HOPE you have this as my sister was just diagnosed and is having a VERY difficult time and is so scared and it has helped SOOOO much to read the posts here and get some responses from people who know what you are going through or just have information.

You are in my thoughts and prayers .. !!!!

GOD BLESS

 
Old 11-14-2010, 05:33 PM   #6
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Re: What now?

Wow..Im sooo new to MS. What can I expect to happen to me...IVe got a 14 year old really smart..I want to be here for her...help Im MS illerate.....

Kris

 
Old 11-14-2010, 05:39 PM   #7
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Re: What now?

Religious beliefs have nothing to do with the disease...If you beleive in God you will still get MS...if you are an athiest you will still get MS......Let just stick to reality. So what we can to make it better.

 
Old 11-14-2010, 05:44 PM   #8
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Re: What now?

Kris, welcome to the boards. There is no way any of us can tell you what to expect from MS as it hits each and every one of us differently. They call it a snowflake disease, because of the individuality of the illness.

You should start by reading posts here, the last 50 posts will all be recent, with people talking about different subjects which have affected them. By reading, youll identify with some of your own issues and fears...the, write us a post asking us to comment on things which are bothering you...youll get alot of information.

the thread you responded to is as good a place to start as any...there were quite a few comments made which state that you cant compare yourself to anyone else!
You should also have a great Neurologist whom you trust. He or She will be your strength in the years to come and the immediate future. You can also look into a local chapter of the MS society to get information....that information will be reputable and up to date. Be careful what you read on the internet, its not all reputable.

Your 14 year old will have her mom for her entire life! This isnt a fatal disease and if you take care of yourself, it doenst have to be disabling. Most of us live very ful lives and have families and kids. I also work fulltime and go to grad school at night, with 3 kids! You can do it too.

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Last edited by MSNik; 11-14-2010 at 05:51 PM.

 
Old 11-24-2010, 05:14 AM   #9
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Re: What now?

Quote:
Originally Posted by darrenmerc View Post
Lisa, I am not sure what your religious beliefs are and in fact, I can understand anyone questioning religion after something devastating happens .. but I am praying for you and I HOPE you have a support system and people who are helping you with all the things you mentioned. My heart goes out to you so much and I WISH I had a magic wand and could just cure the world of any darn problems.

...You are in my thoughts and prayers .. !!!!

GOD BLESS
Actually, I was very active in my little Baptist church in Texas when this all struck in Jan. 2003. I was so scared I was going blind because it really wasn't anything like the previous Optic Neuritis I experienced in '91-- THAT was super painful and this was not. The pastor's wife even gifted me with a large print bible. Such cool people! By the time I got the diagnosis of "Probable MS" (April) the crisis was past. That was a blessing, I suppose, because I wasn't as "het up" and freaked out by my pseudo-blindness.

But then my mom had a devastating stroke in June and my brother needed me to help take care of her. (HE needed the help, I believe!) I tried to get involved in the church there, but the pastor was... recently divorced and a little too friendly.

Mom came home from the hospital in October, but by then I wasn't functioning very well. I wasn't working much, bills were looming and the credit card shuffle was catching up to me (paying one with another, you know). I was dealing with the fact that I could no longer work as a well-paid Administrative Assistant in the city. Even if there was a job like that in rural MN, I no longer had control of my brain!

Cognitive issues are strong in this one! Hah! The Yoda reference is lame, I know... :-\

I had been doing massage therapy in Texas and my credentials were fine where I was in Minnesota. Unfortunately, there wasn't a huge demand and the prices I could charge were about half of what I was used to. And the space I used was in a hair salon 15 miles away. Needless to say, I was only making enough enough money for gas and a few groceries.

SO. I was nursing my mom and keeping house! Housekeeper?! This was NOT in my life plan. Brother was a total mess. No help at all. HE was barely holding on. His business collapsed because he couldn't keep up with the day-to-day.

Amid all this chaos, of course, no one was there for me. I saw how selfish that was, but I was feeling so overwhelmed. Tried to get on SSDI, but was told that since I had some income I would never receive it.

I ended up declaring bankruptcy the following summer and starting over. That meant moving in with my new boyfriend (to just "escape," I am ashamed to say). I often grapple with the horror of being the one to abandon my mom. I never thought I would do that. But I didn't see another way to survive! I have gone back to help out for a week or so a few times, but it doesn't take long to reach the end of my reserves. It's a terrible thing to admit, but I'm always happy to go to MY home...

I wish for my brother to find better balance. He and Mom "muddle through" quite well, but he has really given up his life for her. That is so ...courageous? *I* was supposed to be the one to take care of her in old age (isn't that the daughter's job?). *He* was supposed to find a wife and have children.

Unfortunately, my boyfriend and I moved to another state, I haven't gotten involved in a new church, and support systems are rare out here in the country. Such is life! I cope pretty well. There are days, but, I do ok.

 
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