Reply to Chris

[Guest guest]

Wow! What a powerful piece of writing. I think Marcie summed it in up

in her heart~felt, honest reply.

" You've just said what so many of us think. You have to be careful

where you

express true feelings as so many interpret it as a 'bad attitude'. "

Few of us can really relate our deepest, dark~feelings with the

genuine, straightforward beauty that I have read here. Your message

goes well beyond MS. It should be a memorandum for consumption by

those not yet stricken by a dread disease, or even an unripe old age.

You have been through a lot, Chris. It can't have been for nothing.

As Tom said, " I believe that there is a reason for everything. Most

times the reason in difficult times is a mystery. " As you may know,

he has written books that have been of benefit to others.

You have some strongly held beliefs. You come across as a man who has

done your best to see others, like your " kids off to a good start in

life. " Perhaps, through your writing, you could impact the children

of others and some adults who would become more sensitive to the

plight of isolation, the solo battle against loneliness that many of

us face ~ alone?

Go ahead, get your Hopes up!

I took up writing as a weapon to do battle with depression. Not that

I was able to do much else. I still thought I could, but like you

with PPMS, I had come to even contemplate, " Why! " Well, my first

novel, FOR SALE BY OWNERS:FSBO, is far from a commercial success.

But, I felt much better while creating it and continue to maintain a

Hope that I'll be discovered to be great author or songwriter.

Hebrews 11:1 says, " Faith is the substance of hoped for, the evidence

of things not yet seen.

I guess, what I am suggesting is that you, Marcie, and others

start putting your thoughts and life down on paper. You've clearly

got the time. You have a computer. You would not have reached out on

this group if you didn't have some Hope left. Rekindle your Faith and

take an action ~ that you are clearly capable of. "

said, " Faith without works, is dead. " You are not dead yet. You

have work to do…

Russ

(Here ~below~ is what caused me to reply to your post.)

age: 8

Date: Sun, 14 Nov 2004 00:28:26 +0000

From: chrdana7@...

Subject: Re: ldn, exacerbations, feeling less improvement

How can you avoid stress when you have MSit? I've learned. I've lost

everything to MS and really don't have the energy to fight it

anymore. First I had to watch it destroy my wife. While taking care

of her I was diagnosed with MS myself. We were raising two kids

during that time so the stress was incredible. I was able to get the

kids off to a good start in life but my wife had to go into a nursing

home while I waas doing that. Now the kids are grown and gone, my

wife has been in a nursing home for 7 years, and I live alone while

the disease cripples me. I don't think stress bothers me anymore

because I really don't give a damn about what happens. Death is the

worst that could happen but I'm not so sure that would be such a bad

thing. I struggle through every day hoping it will be my last. People

say to live life one day at a time and I do that as well as anyone. I

really don't think about anything beyond tomorrow. MS has taken

everything from me but I'm trying not to give up. I just wish that I

was able to take care of myself better than I do. I wouldn't eat

anything that I cook so I either go out to eat alone or go to a drive-

thru. I'm really disappointed the way family and friends have reacted

to my disability because I don't hear much from them. A lunch date or

an invitation to dinner would mean the world to me. I don't what is

worse, the MS or the loneliness that it can bring. Well I've rambled

on enough so I'll stop. We all are really only dust in the wind so

don't get stressed out about anything. Peace,

Chris

Message: 11

Date: Sat, 13 Nov 2004 21:35:07 EST

From: marciemjm@...

Subject: Re: ldn, exacerbations, feeling less improvement

You've just said what so many of us think. You have to be careful

where you

express true feelings as so many interpret it as a 'bad attitude'. I

understand you completely. No, I don't see death as being a bad

thing, although I

don't particularly enjoy the thought of dying. What I live with on a

daily basis

can't be worse than death! My goal each day is to get through and

not make

everyone around me as miserable as I am. No one can tell that I am

physically

hurting 24/7. I read about people who think they are bad off, and

they are

only a 2.5 - 3 on the disability scale! Just wait until the 8 rolls

around. It

leaves very little pleasure in anything! If I had known about LDN as

soon as

I had my first symptom who knows what may have been? That's why I

think it

is criminal for docs to not put people on it at the first sign of

MS. A

progressive form of MS is a very slow and painful death. No

comparison in RRMS and

PPMS.

Anyway, go ahead and vent here since there are some who can truly

relate. I

feel your pain. People will say to me, " I'm going to come see you

sometime. "

Or, " We need to go do something sometime. " But they never do, and

that

really doesn't bother me because I get tired of having to keep up the

act. I've

found kids and dogs to be about the best company! They can see past

the

disability. Most able-bodied adults can't. Only when it happens to

them will they

truly understand.

Live life one day at a time? What else is there? That's all anybody

can do.

It's just that my days involve having to figure out how I'm going to

get off

of the toilet this time because what I did 1 - 2 hours ago isn't

working. Or

I go into a public restroom and the stall isn't big enough to close

the door,

so I have to try to act like exposing myself to everyone who walks in

really

isn't as humiliating as it feels. I could go on and on about how

hard day to

day life is, but I'm sure you get the picture!

The depression is inevitable. How does one cope? I don't know. I

think not

knowing the cause and no real good symptomatic treatment, much less a

cure,

makes it real tough. I constantly battle demons from my past and

wonder if I

hadn't done this or that...it nearly drives me crazy! I want someone

or

something to blame, but it wouldn't change anything.

We are easy prey for every gimmick and supplement to hit the market!

A

'friend' called me today and wanted to bring me a book about a

product called PSP.

I told her I wasn't interested. I checked it out 1 1/2 years ago.

Almost

identical to the Ambrotose someone talked me into a couple of years

ago. You

know...it will cure everything and make you rich in the process! I

wonder...does this wheelchair look like a money tree? Besides, I

can't get my hopes up

again to be let down. Oh, it's supposed to work in 4 - 6 weeks!! Ya

right!

Then there are the able-bodied religious people who make us believe

that

we're just not being faithful enough! Well, at this point, faith is

about all

I've got. Nothing else has worked! It can't hurt, but will it

help? It hasn't

taken away the pain or gotten me off of the toilet yet! I'm still

hoping!

I have no words of wisdom. Just hang in there and know that you're

not alone!

______________________________________________________________________

__

______________________________________________________________________

__

Message: 13

Date: Sat, 13 Nov 2004 20:31:13 -0600

From: " Lori " <lorigrady214@...>

Subject: Re: ldn, exacerbations, feeling less improvement

A little off topic- but I think many people don't know how to react

to disability. I find it to be very lonely at times too. My extended

family is the worst. My faith in God and connection at my Christian

church helps keep me going. Also a great husband and teen boys.(

exhausting, but I have to keep going for them) Our church is starting

a ministry to reach out to people with needs. My friend with CFS is

starting it.

I am sorry to hear of the pain you have due to ms. I hope you find

someplace to connect so you don't have to be alone.

Lori

Marcie

Message: 9

Date: Sun, 14 Nov 2004 09:19:45 EST

From: arlizotte@...

Subject: Re: ldn, exacerbations, feeling less improvement

Chris

I am so sorry that things are so bad for you. Remember though that

the

people on this board care about you, and regardless of how bad or

good we may be,

do understand your suffering more than people w/o MS.

I keep everyone on this board and in fact all MS'ers and others who

have

debilitatiung illnesses in my nightly prayers.

One of the things I try to remember is that there are others who are

worse

off than I am, but being human and selfish (part of human nature I

think) I

sometimes forget. Please forgive that.

Again, I am so sorry, and wish I could just give you a big hug and

tell you

that I understand, as much as I possibly can.

Arlene

______________________________________________________________________

__

Message: 15

Date: Sun, 14 Nov 2004 11:41:17 -0500

From: " Bayuk " <tbayuk@...>

Subject: Re: ldn, exacerbations, feeling less improvement

We may not be able to avoid stress but we can learn to manage it.

When faced with any sort of problem if we do the best that we can

regarding that problem, the simple fact of the matter is that we

cannot do more than the best that we can. The problem may not be

solved but we have done the best that we can. Now it is time

to ...let go. We may not be able to do more...frustrating as that

is....there may be no other choice. If that is the case there is

nothing else to do. I know that this sounds simple and I also know

that it is not simple but at times that is just the way that it is.

I also know that at times the problem still must be solved. But if

we have done our best and still cannot solve it, we must let go.

When we do, we will at least have some peace of knowing that we have

done our best and cannot do more.

It is hard enough to come to grips with that. We cannot be

responsible for what others do or do not do. For what they

understand or do not understand.

I personally stopped explaining my actions and or inactions years

ago. This alone has relieved what had been at times an enormous

amount of stress. Fortunately, I have a strong Faith that helps me

get through my most difficult times. I believe that there is a

reason for everything. Most times the reason in difficult times is a

mystery. I accept that and do my best to move on. Not always

successful but at least I know that I cannot do more than doing the

best that I can. I thank God for my Faith and know that He is

always with me. Now I have peace.

Regards,

Tom

essage: 22

Date: Sun, 14 Nov 2004 18:37:56 -0000

From: " Joanne " <jo.comissiong@...>

Subject: Re: ldn, exacerbations, feeling less improvement

I do feel what you are going through and many of us find ourselves

in that situation where we just would like to give up the fight.

But there are those that have this great religious faith which I

have still to acquire and which I do admire because that does help

you over the difficult patches. I have also fought with those dark

notions of calling it quits, sinking into a long restful sleep has

often been a recurring thought but then I look at my daughter and

she gives me the force to pull myself together and get through the

day. It has now become exactly that, get through the day, try to

find the force to try and do your daily bodywork even though

yesterday is never the same as today. Each day one has to re-learn

a new way of getting off one bed's, getting up from a chair without

your legs giving away and getting to the bathroom in time and

manoeuvring onto it without loosing one's balance. Before I was

able to get up on my own when I fell. I had discovered a way to do

it. Now with the progression that has changed and if I'm down, I

can wriggle into whatever position but the little force I had is no

longer there and if I'm alone, I'd be forced to stay there until

someone came along. The only thing that works without any problem

are my tear ducts; my daughter keeps telling me that " Crying does not

help " but it does release the frustration. Now I'm rambling on.

What I wanted to say is that I understand what you are going through

just like all the members in this group. My thoughts are with you

and I'm sending you a virtual hug across the miles.

Kind regards,

Joanne

______________________________________________________________________

__

______________________________________________________________________

__

Message: 24

Date: Sun, 14 Nov 2004 14:54:42 -0500

From: " LarryGC " <larrygc@...>

Subject: Re: Re: ldn, exacerbations, feeling less improvement

I have no religious faith at all. I found Dr. Wayne Dyer's books

back in 1993 and he caught my attention big time. I don't know how

I'd be doing with MS without my transformation. 11 years now,

relatively depression/anxiety-free. If it's just an illusion, great

illusion.

http://www.larrygc.com/dyer.html is my dedication page to him, it

lists all his books.

Can't hurt, can help.

[Guest guest]

Hi Russ,

Thanks for your comments. I actually turned to writing a few years ago after my wife had been in a nursing home for three years. S was just starting to cripple me and I felt that I had a story to tell. I didn't want to write only about the disease so I wrote about the first 50 years of my life. I'm not famous but I was born in 1950 so I'm the perfect example of a Baby Boomer and I thought that a Baby Boomer's journey through the second half of the 20th century would make an interesting story. As you've probably found, getting a literary agent is next to impossible for an unpublished author so I'm looking into self publishing. This is just a story about the first 50 years of my life so I just tell what happened without writing about what I've learned about MS. I could write another book about that. I'm really astonished at how most people disappear when someone close to them gets MS. If they only realized how much tougher that makes the battle I'm sure they would be more considerate. I thought that I knew MS well as my wife's care partner but I've learned that you don't know much about it until it starts taking things away from you. I've been talking to a Boston newspaper columnist about doing a story on me to raise public awareness of what it's like to live alone with a disability. She wants to do a story but she has to wait for her editor to give her approval to write it. It seems that everybody knows someone who has MS but not many people know much about the disease. I just want people to understand that we're not dead just because we're disabled. That's what makes these forums so good. We can all understand how each of us is feeling.so we can reach out to each other in times of need. I'm really trying to get to Montel so I can share my story with him. MS isn't going to impact other lives as much as it has mine but someone new is diagnosed with it every hour and the more they know what to expect the better. That goes for care partners, patients and the public at large. I've been been all three and I want to be heard. Best wishes,

Danahy

-------------- Original message -------------- > > > Wow! What a powerful piece of writing. I think Marcie summed it in up > in her heart~felt, honest reply. > > "You've just said what so many of us think. You have to be careful > where you > express true feelings as so many interpret it as a 'bad attitude'." > > Few of us can really relate our deepest, dark~feelings with the > genuine, straightforward beauty that I have read here. Your message > goes well beyond MS. It should be a memorandum for consumption by > those not yet stricken by a dread disease, or even an unripe old age. > > You have been through a lot, Chris. It can't have been for nothing. > As Tom said, "I believe that there is a reason for everything. Most > times the reason in difficult times is a mystery." As you may know, > he has written books that have been of benefit to others. > > You have some strongly held beliefs. You come across as a man who has > done your best to see others, like your "kids off to a good start in > life." Perhaps, through your writing, you could impact the children > of others and some adults who would become more sensitive to the > plight of isolation, the solo battle against loneliness that many of > us face ~ alone? > > Go ahead, get your Hopes up! > > I took up writing as a weapon to do battle with depression. Not that > I was able to do much else. I still thought I could, but like you > with PPMS, I had come to even contemplate, "Why!" Well, my first > novel, FOR SALE BY OWNERS:FSBO, is far from a commercial success. > But, I felt much better while creating it and continue to maintain a > Hope that I'll be discovered to be great author or songwriter. > Hebrews 11:1 says, "Faith is the substance of hoped for, the evidence > of things not yet seen. > > I guess, what I am suggesting is that you, Marcie, and others > start putting your thoughts and life down on paper. You've clearly > got the time. You have a computer. You would not have reached out on > this group if you didn't have some Hope left. Rekindle your Faith and > take an action ~ that you are clearly capable of." > > said, "Faith without works, is dead." You are not dead yet. You > have work to do… > > Russ > (Here ~below~ is what caused me to reply to your post.) > age: 8 > Date: Sun, 14 Nov 2004 00:28:26 +0000 > From: chrdana7@... > Subject: Re: ldn, exacerbations, feeling less improvement > > How can you avoid stress when you have MSit? I've learned. I've lost > everything to MS and really don't have the energy to fight it > anymore. First I had to watch it destroy my wife. While taking care > of her I was diagnosed with MS myself. We were raising two kids > during that time so the stress was incredible. I was able to get the > kids off to a good start in life but my wife had to go into a nursing > home while I waas doing that. Now the kids are grown and gone, my > wife has been in a nursing home for 7 years, and I live alone while > the disease cripples me. I don't think stress bothers me anymore > because I really don't give a damn about what happens. Death is the > worst that could happen but I'm not so sure that would be such a bad > thing. I struggle through every day hoping it will be my last. People > say to live life one day at a time and I do that as well as anyone. I > really don't think about anything beyond tomorrow. MS has taken > everything from me but I'm trying not to give up. I just wish that I > was able to take care of myself better than I do. I wouldn't eat > anything that I cook so I either go out to eat alone or go to a drive- > thru. I'm really disappointed the way family and friends have reacted > to my disability because I don't hear much from them. A lunch date or > an invitation to dinner would mean the world to me. I don't what is > worse, the MS or the loneliness that it can bring. Well I've rambled > on enough so I'll stop. We all are really only dust in the wind so > don't get stressed out about anything. Peace, > > > Message: 11 > Date: Sat, 13 Nov 2004 21:35:07 EST > From: marciemjm@... > Subject: Re: ldn, exacerbations, feeling less improvement > > > > You've just said what so many of us think. You have to be careful > where you > express true feelings as so many interpret it as a 'bad attitude'. I > understand you completely. No, I don't see death as being a bad > thing, although I > don't particularly enjoy the thought of dying. What I live with on a > daily basis > can't be worse than death! My goal each day is to get through and > not make > everyone around me as miserable as I am. No one can tell that I am > physically > hurting 24/7. I read about people who think they are bad off, and > they are > only a 2.5 - 3 on the disability scale! Just wait until the 8 rolls > around. It > leaves very little pleasure in anything! If I had known about LDN as > soon as > I had my first symptom who knows what may have been? That's why I > think it > is criminal for docs to not put people on it at the first sign of > MS. A > progressive form of MS is a very slow and painful death. No > comparison in RRMS and > PPMS. > > Anyway, go ahead and vent here since there are some who can truly > relate. I > feel your pain. People will say to me, "I'm going to come see you > sometime." > Or, "We need to go do something sometime." But they never do, and > that > really doesn't bother me because I get tired of having to keep up the > act. I've > found kids and dogs to be about the best company! They can see past > the > disability. Most able-bodied adults can't. Only when it happens to > them will they > truly understand. > > Live life one day at a time? What else is there? That's all anybody > can do. > It's just that my days involve having to figure out how I'm going to > get off > of the toilet this time because what I did 1 - 2 hours ago isn't > working. Or > I go into a public restroom and the stall isn't big enough to close > the door, > so I have to try to act like exposing myself to everyone who walks in > really > isn't as humiliating as it feels. I could go on and on about how > hard day to > day life is, but I'm sure you get the picture! > > The depression is inevitable. How does one cope? I don't know. I > think not > knowing the cause and no real good symptomatic treatment, much less a > cure, > makes it real tough. I constantly battle demons from my past and > wonder if I > hadn't done this or that...it nearly drives me crazy! I want someone > or > something to blame, but it wouldn't change anything. > > We are easy prey for every gimmick and supplement to hit the market! > A > 'friend' called me today and wanted to bring me a book about a > product called PSP. > I told her I wasn't interested. I checked it out 1 1/2 years ago. > Almost > identical to the Ambrotose someone talked me into a couple of years > ago. You > know...it will cure everything and make you rich in the process! I > wonder...does this wheelchair look like a money tree? Besides, I > can't get my hopes up > again to be let down. Oh, it's supposed to work in 4 - 6 weeks!! Ya > right! > > Then there are the able-bodied religious people who make us believe > that > we're just not being faithful enough! Well, at this point, faith is > about all > I've got. Nothing else has worked! It can't hurt, but will it > help? It hasn't > taken away the pain or gotten me off of the toilet yet! I'm still > hoping! > > I have no words of wisdom. Just hang in there and know that you're > not alone! > ______________________________________________________________________ > __ > ______________________________________________________________________ > __ > > Message: 13 > Date: Sat, 13 Nov 2004 20:31:13 -0600 > From: "Lori" > Subject: Re: ldn, exacerbations, feeling less improvement > > A little off topic- but I think many people don't know how to react > to disability. I find it to be very lonely at times too. My extended > family is the worst. My faith in God and connection at my Christian > church helps keep me going. Also a great husband and teen boys.( > exhausting, but I have to keep going for them) Our church is starting > a ministry to reach out to people with needs. My friend with CFS is > starting it. > > I am sorry to hear of the pain you have due to ms. I hope you find > someplace to connect so you don't have to be alone. > > Lori > Marcie > Message: 9 > Date: Sun, 14 Nov 2004 09:19:45 EST > From: arlizotte@... > Subject: Re: ldn, exacerbations, feeling less improvement > > > I am so sorry that things are so bad for you. Remember though that > the > people on this board care about you, and regardless of how bad or > good we may be, > do understand your suffering more than people w/o MS. > I keep everyone on this board and in fact all MS'ers and others who > have > debilitatiung illnesses in my nightly prayers. > One of the things I try to remember is that there are others who are > worse > off than I am, but being human and selfish (part of human nature I > think) I > sometimes forget. Please forgive that. > Again, I am so sorry, and wish I could just give you a big hug and > tell you > that I understand, as much as I possibly can. > Arlene > ______________________________________________________________________ > __ > > Message: 15 > Date: Sun, 14 Nov 2004 11:41:17 -0500 > From: " Bayuk" > Subject: Re: ldn, exacerbations, feeling less improvement > > We may not be able to avoid stress but we can learn to manage it. > When faced with any sort of problem if we do the best that we can > regarding that problem, the simple fact of the matter is that we > cannot do more than the best that we can. The problem may not be > solved but we have done the best that we can. Now it is time > to ...let go. We may not be able to do more...frustrating as that > is....there may be no other choice. If that is the case there is > nothing else to do. I know that this sounds simple and I also know > that it is not simple but at times that is just the way that it is. > I also know that at times the problem still must be solved. But if > we have done our best and still cannot solve it, we must let go. > > When we do, we will at least have some peace of knowing that we have > done our best and cannot do more. > > It is hard enough to come to grips with that. We cannot be > responsible for what others do or do not do. For what they > understand or do not understand. > > I personally stopped explaining my actions and or inactions years > ago. This alone has relieved what had been at times an enormous > amount of stress. Fortunately, I have a strong Faith that helps me > get through my most difficult times. I believe that there is a > reason for everything. Most times the reason in difficult times is a > mystery. I accept that and do my best to move on. Not always > successful but at least I know that I cannot do more than doing the > best that I can. I thank God for my Faith and know that He is > always with me. Now I have peace. > Regards, > Tom > essage: 22 > Date: Sun, 14 Nov 2004 18:37:56 -0000 > From: "Joanne" > Subject: Re: ldn, exacerbations, feeling less improvement > > > > > I do feel what you are going through and many of us find ourselves > in that situation where we just would like to give up the fight. > But there are those that have this great religious faith which I > have still to acquire and which I do admire because that does help > you over the difficult patches. I have also fought with those dark > notions of calling it quits, sinking into a long restful sleep has > often been a recurring thought but then I look at my daughter and > she gives me the force to pull myself together and get through the > day. It has now become exactly that, get through the day, try to > find the force to try and do your daily bodywork even though > yesterday is never the same as today. Each day one has to re-learn > a new way of getting off one bed's, getting up from a chair without > your legs giving away and getting to the bathroom in time and > manoeuvring onto it without loosing one's balance. Before I was > able to get up on my own when I fell. I had discovered a way to do > it. Now with the progression that has changed and if I'm down, I > can wriggle into whatever position but the little force I had is no > longer there and if I'm alone, I'd be forced to stay there until > someone came along. The only thing that works without any problem > are my tear ducts; my daughter keeps telling me that"Crying does not > help" but it does release the frustration. Now I'm rambling on. > What I wanted to say is that I understand what you are going through > just like all the members in this group. My thoughts are with you > and I'm sending you a virtual hug across the miles. > Kind regards, > Joanne > ______________________________________________________________________ > __ > ______________________________________________________________________ > __ > > Message: 24 > Date: Sun, 14 Nov 2004 14:54:42 -0500 > From: "LarryGC" > Subject: Re: Re: ldn, exacerbations, feeling less improvement > > I have no religious faith at all. I found Dr. Wayne Dyer's books > back in 1993 and he caught my attention big time. I don't know how > I'd be doing with MS without my transformation. 11 years now, > relatively depression/anxiety-free. If it's just an illusion, great > illusion. > > http://www.larrygc.com/dyer.html is my dedication page to him, it > lists all his books. > > Can't hurt, can help. > > > > > > > >

[Guest guest]

I keep wondering what it would be like to be in a relationship that cared enough to support you when you became ill vs. resentment, cruelty and emotional abuse.

----- Original Message -----

From: chrdana7@...

Russ Miles ; low dose naltrexone

Sent: Sunday, November 14, 2004 5:33 PM

Subject: Re: [low dose naltrexone] Reply to Chris

Hi Russ,

Thanks for your comments. I actually turned to writing a few years ago after my wife had been in a nursing home for three years. S was just starting to cripple me and I felt that I had a story to tell. I didn't want to write only about the disease so I wrote about the first 50 years of my life. I'm not famous but I was born in 1950 so I'm the perfect example of a Baby Boomer and I thought that a Baby Boomer's journey through the second half of the 20th century would make an interesting story. As you've probably found, getting a literary agent is next to impossible for an unpublished author so I'm looking into self publishing. This is just a story about the first 50 years of my life so I just tell what happened without writing about what I've learned about MS. I could write another book about that. I'm really astonished at how most people disappear when someone close to them gets MS. If they only realized how much tougher that makes the battle I'm sure they would be more considerate. I thought that I knew MS well as my wife's care partner but I've learned that you don't know much about it until it starts taking things away from you. I've been talking to a Boston newspaper columnist about doing a story on me to raise public awareness of what it's like to live alone with a disability. She wants to do a story but she has to wait for her editor to give her approval to write it. It seems that everybody knows someone who has MS but not many people know much about the disease. I just want people to understand that we're not dead just because we're disabled. That's what makes these forums so good. We can all understand how each of us is feeling.so we can reach out to each other in times of need. I'm really trying to get to Montel so I can share my story with him. MS isn't going to impact other lives as much as it has mine but someone new is diagnosed with it every hour and the more they know what to expect the better. That goes for care partners, patients and the public at large. I've been been all three and I want to be heard. Best wishes,

Danahy

-------------- Original message -------------- > > > Wow! What a powerful piece of writing. I think Marcie summed it in up > in her heart~felt, honest reply. > > "You've just said what so many of us think. You have to be careful > where you > express true feelings as so many interpret it as a 'bad attitude'." > > Few of us can really relate our deepest, dark~feelings with the > genuine, straightforward beauty that I have read here. Your message > goes well beyond MS. It should be a memorandum for consumption by > those not yet stricken by a dread disease, or even an unripe old age. > > You have been through a lot, Chris. It can't have been for nothing. > As Tom said, "I believe that there is a reason for everything. Most > times the reason in difficult times is a mystery." As you may know, > he has written books that have been of benefit to others. > > You have some strongly held beliefs. You come across as a man who has > done your best to see others, like your "kids off to a good start in > life." Perhaps, through your writing, you could impact the children > of others and some adults who would become more sensitive to the > plight of isolation, the solo battle against loneliness that many of > us face ~ alone? > > Go ahead, get your Hopes up! > > I took up writing as a weapon to do battle with depression. Not that > I was able to do much else. I still thought I could, but like you > with PPMS, I had come to even contemplate, "Why!" Well, my first > novel, FOR SALE BY OWNERS:FSBO, is far from a commercial success. > But, I felt much better while creating it and continue to maintain a > Hope that I'll be discovered to be great author or songwriter. > Hebrews 11:1 says, "Faith is the substance of hoped for, the evidence > of things not yet seen. > > I guess, what I am suggesting is that you, Marcie, and others > start putting your thoughts and life down on paper. You've clearly > got the time. You have a computer. You would not have reached out on > this group if you didn't have some Hope left. Rekindle your Faith and > take an action ~ that you are clearly capable of." > > said, "Faith without works, is dead." You are not dead yet. You > have work to do… > > Russ > (Here ~below~ is what caused me to reply to your post.) > age: 8 > Date: Sun, 14 Nov 2004 00:28:26 +0000 > From: chrdana7@... > Subject: Re: ldn, exacerbations, feeling less improvement > > How can you avoid stress when you have MSit? I've learned. I've lost > everything to MS and really don't have the energy to fight it > anymore. First I had to watch it destroy my wife. While taking care > of her I was diagnosed with MS myself. We were raising two kids > during that time so the stress was incredible. I was able to get the > kids off to a good start in life but my wife had to go into a nursing > home while I waas doing that. Now the kids are grown and gone, my > wife has been in a nursing home for 7 years, and I live alone while > the disease cripples me. I don't think stress bothers me anymore > because I really don't give a damn about what happens. Death is the > worst that could happen but I'm not so sure that would be such a bad > thing. I struggle through every day hoping it will be my last. People > say to live life one day at a time and I do that as well as anyone. I > really don't think about anything beyond tomorrow. MS has taken > everything from me but I'm trying not to give up. I just wish that I > was able to take care of myself better than I do. I wouldn't eat > anything that I cook so I either go out to eat alone or go to a drive- > thru. I'm really disappointed the way family and friends have reacted > to my disability because I don't hear much from them. A lunch date or > an invitation to dinner would mean the world to me. I don't what is > worse, the MS or the loneliness that it can bring. Well I've rambled > on enough so I'll stop. We all are really only dust in the wind so > don't get stressed out about anything. Peace, > > > Message: 11 > Date: Sat, 13 Nov 2004 21:35:07 EST > From: marciemjm@... > Subject: Re: ldn, exacerbations, feeling less improvement > > > > You've just said what so many of us think. You have to be careful > where you > express true feelings as so many interpret it as a 'bad attitude'. I > understand you completely. No, I don't see death as being a bad > thing, although I > don't particularly enjoy the thought of dying. What I live with on a > daily basis > can't be worse than death! My goal each day is to get through and > not make > everyone around me as miserable as I am. No one can tell that I am > physically > hurting 24/7. I read about people who think they are bad off, and > they are > only a 2.5 - 3 on the disability scale! Just wait until the 8 rolls > around. It > leaves very little pleasure in anything! If I had known about LDN as > soon as > I had my first symptom who knows what may have been? That's why I > think it > is criminal for docs to not put people on it at the first sign of > MS. A > progressive form of MS is a very slow and painful death. No > comparison in RRMS and > PPMS. > > Anyway, go ahead and vent here since there are some who can truly > relate. I > feel your pain. People will say to me, "I'm going to come see you > sometime." > Or, "We need to go do something sometime." But they never do, and > that > really doesn't bother me because I get tired of having to keep up the > act. I've > found kids and dogs to be about the best company! They can see past > the > disability. Most able-bodied adults can't. Only when it happens to > them will they > truly understand. > > Live life one day at a time? What else is there? That's all anybody > can do. > It's just that my days involve having to figure out how I'm going to > get off > of the toilet this time because what I did 1 - 2 hours ago isn't > working. Or > I go into a public restroom and the stall isn't big enough to close > the door, > so I have to try to act like exposing myself to everyone who walks in > really > isn't as humiliating as it feels. I could go on and on about how > hard day to > day life is, but I'm sure you get the picture! > > The depression is inevitable. How does one cope? I don't know. I > think not > knowing the cause and no real good symptomatic treatment, much less a > cure, > makes it real tough. I constantly battle demons from my past and > wonder if I > hadn't done this or that...it nearly drives me crazy! I want someone > or > something to blame, but it wouldn't change anything. > > We are easy prey for every gimmick and supplement to hit the market! > A > 'friend' called me today and wanted to bring me a book about a > product called PSP. > I told her I wasn't interested. I checked it out 1 1/2 years ago. > Almost > identical to the Ambrotose someone talked me into a couple of years > ago. You > know...it will cure everything and make you rich in the process! I > wonder...does this wheelchair look like a money tree? Besides, I > can't get my hopes up > again to be let down. Oh, it's supposed to work in 4 - 6 weeks!! Ya > right! > > Then there are the able-bodied religious people who make us believe > that > we're just not being faithful enough! Well, at this point, faith is > about all > I've got. Nothing else has worked! It can't hurt, but will it > help? It hasn't > taken away the pain or gotten me off of the toilet yet! I'm still > hoping! > > I have no words of wisdom. Just hang in there and know that you're > not alone! > ______________________________________________________________________ > __ > ______________________________________________________________________ > __ > > Message: 13 > Date: Sat, 13 Nov 2004 20:31:13 -0600 > From: "Lori" > Subject: Re: ldn, exacerbations, feeling less improvement > > A little off topic- but I think many people don't know how to react > to disability. I find it to be very lonely at times too. My extended > family is the worst. My faith in God and connection at my Christian > church helps keep me going. Also a great husband and teen boys.( > exhausting, but I have to keep going for them) Our church is starting > a ministry to reach out to people with needs. My friend with CFS is > starting it. > > I am sorry to hear of the pain you have due to ms. I hope you find > someplace to connect so you don't have to be alone. > > Lori > Marcie > Message: 9 > Date: Sun, 14 Nov 2004 09:19:45 EST > From: arlizotte@... > Subject: Re: ldn, exacerbations, feeling less improvement > > > I am so sorry that things are so bad for you. Remember though that > the > people on this board care about you, and regardless of how bad or > good we may be, > do understand your suffering more than people w/o MS. > I keep everyone on this board and in fact all MS'ers and others who > have > debilitatiung illnesses in my nightly prayers. > One of the things I try to remember is that there are others who are > worse > off than I am, but being human and selfish (part of human nature I > think) I > sometimes forget. Please forgive that. > Again, I am so sorry, and wish I could just give you a big hug and > tell you > that I understand, as much as I possibly can. > Arlene > ______________________________________________________________________ > __ > > Message: 15 > Date: Sun, 14 Nov 2004 11:41:17 -0500 > From: " Bayuk" > Subject: Re: ldn, exacerbations, feeling less improvement > > We may not be able to avoid stress but we can learn to manage it. > When faced with any sort of problem if we do the best that we can > regarding that problem, the simple fact of the matter is that we > cannot do more than the best that we can. The problem may not be > solved but we have done the best that we can. Now it is time > to ...let go. We may not be able to do more...frustrating as that > is....there may be no other choice. If that is the case there is > nothing else to do. I know that this sounds simple and I also know > that it is not simple but at times that is just the way that it is. > I also know that at times the problem still must be solved. But if > we have done our best and still cannot solve it, we must let go. > > When we do, we will at least have some peace of knowing that we have > done our best and cannot do more. > > It is hard enough to come to grips with that. We cannot be > responsible for what others do or do not do. For what they > understand or do not understand. > > I personally stopped explaining my actions and or inactions years > ago. This alone has relieved what had been at times an enormous > amount of stress. Fortunately, I have a strong Faith that helps me > get through my most difficult times. I believe that there is a > reason for everything. Most times the reason in difficult times is a > mystery. I accept that and do my best to move on. Not always > successful but at least I know that I cannot do more than doing the > best that I can. I thank God for my Faith and know that He is > always with me. Now I have peace. > Regards, > Tom > essage: 22 > Date: Sun, 14 Nov 2004 18:37:56 -0000 > From: "Joanne" > Subject: Re: ldn, exacerbations, feeling less improvement > > > > > I do feel what you are going through and many of us find ourselves > in that situation where we just would like to give up the fight. > But there are those that have this great religious faith which I > have still to acquire and which I do admire because that does help > you over the difficult patches. I have also fought with those dark > notions of calling it quits, sinking into a long restful sleep has > often been a recurring thought but then I look at my daughter and > she gives me the force to pull myself together and get through the > day. It has now become exactly that, get through the day, try to > find the force to try and do your daily bodywork even though > yesterday is never the same as today. Each day one has to re-learn > a new way of getting off one bed's, getting up from a chair without > your legs giving away and getting to the bathroom in time and > manoeuvring onto it without loosing one's balance. Before I was > able to get up on my own when I fell. I had discovered a way to do > it. Now with the progression that has changed and if I'm down, I > can wriggle into whatever position but the little force I had is no > longer there and if I'm alone, I'd be forced to stay there until > someone came along. The only thing that works without any problem > are my tear ducts; my daughter keeps telling me that"Crying does not > help" but it does release the frustration. Now I'm rambling on. > What I wanted to say is that I understand what you are going through > just like all the members in this group. My thoughts are with you > and I'm sending you a virtual hug across the miles. > Kind regards, > Joanne > ______________________________________________________________________ > __ > ______________________________________________________________________ > __ > > Message: 24 > Date: Sun, 14 Nov 2004 14:54:42 -0500 > From: "LarryGC" > Subject: Re: Re: ldn, exacerbations, feeling less improvement > > I have no religious faith at all. I found Dr. Wayne Dyer's books > back in 1993 and he caught my attention big time. I don't know how > I'd be doing with MS without my transformation. 11 years now, > relatively depression/anxiety-free. If it's just an illusion, great > illusion. > > http://www.larrygc.com/dyer.html is my dedication page to him, it > lists all his books. > > Can't hurt, can help. > > > > > > > >