Things that are emotional, and hard to talk about with multiple sclerosis

[Guest guest]

Hi Folks,

A fellow ms'er sent this to me today. I am writing a new book about the things we don't talk about.

These are some of his experiences, He is optimistic, pro-active and extremely helpful to other ms'er's. Your thoughts and experiences would be appreciated by me. Thank you.

Regards,

Tom

Things that are emotional, and hard to talk about with multiple sclerosis.

I was diagnosed in 1993 with multiple sclerosis, I had symptoms years earlier, but I did not go to a doctor. Only my mother knew of the symptoms like nerves, that were crawling on my legs. This only lasted a few weeks,this happened when I was getting ready for bed. This happened when I was about 19 years old, what I did for living I believe has a lot to do with the symptoms of multiple sclerosis, I painted cars, and worked with many chemicals, and inhaled them, at the same time, I believe things in our environment cause the symptoms and they have given the name multiple sclerosis to the conditions that we have.

Not till I was 38 years old was I diagnosed with multiple sclerosis, I got married when I was 30 years old. I thought she was a good woman, and we wanted the same things, but I was wrong. I was diagnosed when I came home from a business trip from Detroit Michigan. I went blind in one eye, a few times and was able to make it home, I went right to the doctors, and shortly later, I was diagnosed with multiple sclerosis, what they did not do was teach me how to deal with the changes that my body was going to go through. They also did not help my wife and the proper fashion.

Multiple sclerosis for me, it has been very difficult for many reasons, I suffered with pain all over my body, for seven years, I did the drugs and paid a very big price. I was put in the hospital for over two weeks, for an addiction to pain medication, this ruined my marriage along with the, other drugs that caused changes in emotional and physical areas, of my body.

What they don't do, is teach us how to deal with life with multiple sclerosis, it takes a very special spouse if you're lucky to adjust to these changes, they don't teach us how to live just on security disability, they don't help us with living arrangements, or funds to live on, or food, and cleaning arrangements, they let you fend for yourself. And hopefully things work out. During my multiple sclerosis I had many changes in living arrangements, and some physical some emotional, somewhere work-related, somewhere things I could not adjust to, there are many changes to deal with.

Changes to deal with that are hard,

Not making a living,

Not working any longer

No financial income other than disability.

Dealing with a spouse, that does not understand the changes in our bodies, with multiple sclerosis.

Dealing with divorce and separation caused by having multiple sclerosis

..

Dealing with living arrangements, because income is limited.

..

Dealing with Doctors, that feel they are right on everything, and offer no real help in dealing with our multiple sclerosis, just false drugs, that don't work, and you're still left to deal with the adjusting changes of our body and life.

The adjusting changes, of life.

Body Functions Elimination

Sexual issues Feelings, of life changes Feelings of Hopelessness.

What would be nice, is there was a organization, that would step in and help with these adjustments. There seems to be no help from the Multiple sclerosis Society, or other groups, or government agencies, to make life's easier, what I have learned is that there is no little pill, to make us feel better, and to deal with these changes, it is our close friends than help deal with these changes.

There is a lot to write about, there are natural things that seem to work better, but it's up to each individual to figure this out for themselves help is there we just have to open ourselves up to it.

[Guest guest]

Thanks for posting that Tom

It really sums up a few of the issues we face daily.

My heart really goes out to the author of this as I saw it in my brothers life.

Now in my life I have a wife that is one in a million and that alone is worth more than all the gold in the world.

Reg.

-- [low dose naltrexone] Things that are emotional, and hard to talk about with multiple sclerosis

Hi Folks,

A fellow ms'er sent this to me today. I am writing a new book about the things we don't talk about.

These are some of his experiences, He is optimistic, pro-active and extremely helpful to other ms'er's. Your thoughts and experiences would be appreciated by me. Thank you.

Regards,

Tom

Things that are emotional, and hard to talk about with multiple sclerosis.

I was diagnosed in 1993 with multiple sclerosis, I had symptoms years earlier, but I did not go to a doctor. Only my mother knew of the symptoms like nerves, that were crawling on my legs. This only lasted a few weeks,this happened when I was getting ready for bed. This happened when I was about 19 years old, what I did for living I believe has a lot to do with the symptoms of multiple sclerosis, I painted cars, and worked with many chemicals, and inhaled them, at the same time, I believe things in our environment cause the symptoms and they have given the name multiple sclerosis to the conditions that we have.

Not till I was 38 years old was I diagnosed with multiple sclerosis, I got married when I was 30 years old. I thought she was a good woman, and we wanted the same things, but I was wrong. I was diagnosed when I came home from a business trip from Detroit Michigan. I went blind in one eye, a few times and was able to make it home, I went right to the doctors, and shortly later, I was diagnosed with multiple sclerosis, what they did not do was teach me how to deal with the changes that my body was going to go through. They also did not help my wife and the proper fashion.

Multiple sclerosis for me, it has been very difficult for many reasons, I suffered with pain all over my body, for seven years, I did the drugs and paid a very big price. I was put in the hospital for over two weeks, for an addiction to pain medication, this ruined my marriage along with the, other drugs that caused changes in emotional and physical areas, of my body.

What they don't do, is teach us how to deal with life with multiple sclerosis, it takes a very special spouse if you're lucky to adjust to these changes, they don't teach us how to live just on security disability, they don't help us with living arrangements, or funds to live on, or food, and cleaning arrangements, they let you fend for yourself. And hopefully things work out. During my multiple sclerosis I had many changes in living arrangements, and some physical some emotional, somewhere work-related, somewhere things I could not adjust to, there are many changes to deal with.

Changes to deal with that are hard,

Not making a living,

Not working any longer

No financial income other than disability.

Dealing with a spouse, that does not understand the changes in our bodies, with multiple sclerosis.

Dealing with divorce and separation caused by having multiple sclerosis

..

Dealing with living arrangements, because income is limited.

..

Dealing with Doctors, that feel they are right on everything, and offer no real help in dealing with our multiple sclerosis, just false drugs, that don't work, and you're still left to deal with the adjusting changes of our body and life.

The adjusting changes, of life.

Body Functions Elimination

Sexual issues Feelings, of life changes Feelings of Hopelessness.

What would be nice, is there was a organization, that would step in and help with these adjustments. There seems to be no help from the Multiple sclerosis Society, or other groups, or government agencies, to make life's easier, what I have learned is that there is no little pill, to make us feel better, and to deal with these changes, it is our close friends than help deal with these changes.

There is a lot to write about, there are natural things that seem to work better, but it's up to each individual to figure this out for themselves help is there we just have to open ourselves up to it.

[Guest guest]

Thanks Tom,

Another wonderful story from the heart. As painful and sad a story as

it is; it is the plain and simple truth. We are in this alone unless

we are fortunate enough to have a good spouse (I do) or support group

of friends and family. This is a very lonely disease and because in

most cases there is no fear of imminent death, medical groups do not

understand how horrible this disease is. I agree too that the MS

Society (even here in Canada) is of no help at all.

God Bless you Tom,

Kathy H

On 29-Dec-04, at 11:10 AM, tom bayuk wrote:

> Hi Folks,

> A fellow ms'er sent this to me today.  I am writing a new book about

> the things we don't talk about. 

>  

> These are some of his experiences, He is optimistic, pro-active and

> extremely helpful to other ms'er's.  Your thoughts and experiences

> would be appreciated by me.  Thank you.

> Regards,

> Tom

>  

>  

>

> Things that are emotional, and hard to talk about with multiple

> sclerosis.

>

>  

>

> I was diagnosed in 1993 with multiple sclerosis, I had symptoms years

> earlier, but I did not go to a doctor. Only my mother knew of the

> symptoms like nerves, that were crawling on my legs.  This only lasted

> a few weeks,this happened when I was getting ready for bed.  This

> happened when I was about 19 years old, what I did for living I

> believe has a lot to do with the symptoms of multiple sclerosis, I

> painted cars, and worked with many chemicals, and inhaled them, at the

> same time, I believe things in our environment cause the symptoms and

> they have given the name multiple sclerosis to the conditions that we

> have.

>

>  

>

> Not till I was 38 years old was I diagnosed with multiple sclerosis, I

> got married when I was 30 years old.  I thought she was a good woman,

> and we wanted the same things, but I was wrong.  I was diagnosed when

> I came home from a business trip from Detroit Michigan.  I went blind

> in one eye, a few times and was able to make it home, I went right to

> the doctors, and shortly later, I was diagnosed with multiple

> sclerosis, what they did not do was teach me how to deal with the

> changes that my body was going to go through.  They also did not help

> my wife and the proper fashion.

>

>  

>

> Multiple sclerosis for me, it has been very difficult for many

> reasons, I suffered with pain all over my body, for seven years, I did

> the drugs and paid a very big price.  I was put in the hospital for

> over two weeks, for an addiction to pain medication, this ruined my

> marriage along with the, other drugs that caused changes in emotional

> and physical areas, of my body.

>

>  

>

> What they don't do, is teach us how to deal with life with multiple

> sclerosis, it takes a very special spouse if you're lucky to adjust to

> these changes, they don't teach us how to live just on security

> disability, they don't help us with living arrangements, or funds to

> live on, or food, and cleaning arrangements, they let you fend for

> yourself.  And hopefully things work out.  During my multiple

> sclerosis I had many changes in living arrangements, and some physical

> some emotional, somewhere work-related, somewhere things I could not

> adjust to, there are many changes to deal with.

>

>  

>

> Changes to deal with that are hard,

>

>  

>

> Not making a living,

>

>  Not working any longer

>

>  No financial income other than disability.

>

> Dealing with a spouse, that does not understand the changes in our

> bodies, with multiple sclerosis.

>

> Dealing with divorce and separation caused by having multiple sclerosis

>

> .

>

> Dealing with living arrangements, because income is limited.

>

> .

>

> Dealing with Doctors, that feel they are right on everything, and

> offer no real help in dealing with our multiple sclerosis, just false

> drugs, that don't work, and you're still left to deal with the

> adjusting changes of our body and life.

>

>  

>

>  

>

> The adjusting changes, of life.

> 1. Body Functions

> 2. Elimination

> 3. Sexual issues

> 4. Feelings, of life changes

> 5. Feelings of Hopelessness.

>

>  

>

>  

>

> What would be nice, is there was a organization, that would step in

> and help with these adjustments.  There seems to be no help from the

> Multiple sclerosis Society, or other groups, or government agencies,

> to make life's easier, what I have learned is that there is no little

> pill, to make us feel better, and to deal with these changes, it is

> our close friends than help deal with these changes.

>

>  

>

> There is a lot to write about, there are natural things that seem to

> work better, but it's up to each individual to figure this out for

> themselves help is there we just have to open ourselves up to it.

>  

>

>

>

>

[Guest guest]

Hi Kathy,

God Bless you too.....we're going to beat this!!

Regards,

Tom

Re: [low dose naltrexone] Things that are emotional, and hard to talk about with multiple sclerosis

Thanks Tom,Another wonderful story from the heart. As painful and sad a story as it is; it is the plain and simple truth. We are in this alone unless we are fortunate enough to have a good spouse (I do) or support group of friends and family. This is a very lonely disease and because in most cases there is no fear of imminent death, medical groups do not understand how horrible this disease is. I agree too that the MS Society (even here in Canada) is of no help at all.God Bless you Tom,Kathy HOn 29-Dec-04, at 11:10 AM, tom bayuk wrote:

Hi Folks,A fellow ms'er sent this to me today. I am writing a new book about the things we don't talk about. These are some of his experiences, He is optimistic, pro-active and extremely helpful to other ms'er's. Your thoughts and experiences would be appreciated by me. Thank you.Regards,Tom Things that are emotional, and hard to talk about with multiple sclerosis. I was diagnosed in 1993 with multiple sclerosis, I had symptoms years earlier, but I did not go to a doctor. Only my mother knew of the symptoms like nerves, that were crawling on my legs. This only lasted a few weeks,this happened when I was getting ready for bed. This happened when I was about 19 years old, what I did for living I believe has a lot to do with the symptoms of multiple sclerosis, I painted cars, and worked with many chemicals, and inhaled them, at the same time, I believe things in our environment cause the symptoms and they have given the name multiple sclerosis to the conditions that we have. Not till I was 38 years old was I diagnosed with multiple sclerosis, I got married when I was 30 years old. I thought she was a good woman, and we wanted the same things, but I was wrong. I was diagnosed when I came home from a business trip from Detroit Michigan. I went blind in one eye, a few times and was able to make it home, I went right to the doctors, and shortly later, I was diagnosed with multiple sclerosis, what they did not do was teach me how to deal with the changes that my body was going to go through. They also did not help my wife and the proper fashion. Multiple sclerosis for me, it has been very difficult for many reasons, I suffered with pain all over my body, for seven years, I did the drugs and paid a very big price. I was put in the hospital for over two weeks, for an addiction to pain medication, this ruined my marriage along with the, other drugs that caused changes in emotional and physical areas, of my body. What they don't do, is teach us how to deal with life with multiple sclerosis, it takes a very special spouse if you're lucky to adjust to these changes, they don't teach us how to live just on security disability, they don't help us with living arrangements, or funds to live on, or food, and cleaning arrangements, they let you fend for yourself. And hopefully things work out. During my multiple sclerosis I had many changes in living arrangements, and some physical some emotional, somewhere work-related, somewhere things I could not adjust to, there are many changes to deal with. Changes to deal with that are hard, Not making a living, Not working any longer No financial income other than disability.Dealing with a spouse, that does not understand the changes in our bodies, with multiple sclerosis.Dealing with divorce and separation caused by having multiple sclerosis.Dealing with living arrangements, because income is limited..Dealing with Doctors, that feel they are right on everything, and offer no real help in dealing with our multiple sclerosis, just false drugs, that don't work, and you're still left to deal with the adjusting changes of our body and life. The adjusting changes, of life.1. Body Functions 2. Elimination 3. Sexual issues 4. Feelings, of life changes 5. Feelings of Hopelessness. What would be nice, is there was a organization, that would step in and help with these adjustments. There seems to be no help from the Multiple sclerosis Society, or other groups, or government agencies, to make life's easier, what I have learned is that there is no little pill, to make us feel better, and to deal with these changes, it is our close friends than help deal with these changes. There is a lot to write about, there are natural things that seem to work better, but it's up to each individual to figure this out for themselves help is there we just have to open ourselves up to it.