Aa
Wanting a do over do deal with fear
I have tried to go back and 'retrace my steps' so to speak to try to figure out why I responded to a certain thread the way I did on Friday.
On friday, I remember placing my hands on my calves and realizing that I had loss sensation on both calves and areas on the sides of my lower legs. I have already lost sensation in quite a few places, one of them being part of my re___m (sorry I just can't say it). The newer finding made my old fears come up magnified.
I started scouring the web looking for ways that I could retain my dignity when I become unable to do my personal care. Urine is bad enough, the possibility of not being able to control my intestines scares me to death!! Visions of my sister having to wipe my rear off makes me want to pass out. Visions of soiling myself even worse.
During my moms dementia, she was found with fecal material under her fingernails and in her hair. She was a beautiful classy woman-----what a horrible way for her life to end.
I found something that may help me but only for one toilet. Then I wondered if I could order a colostomy voluntarily.
I remember crying really hard I was alone so no one could hear me. And then I remember getting mad, especially mad too becuase I couldn't find any research about PPMS. I don't remember getting this mad after I was diagnosed.
Then I did something without thinking and hurt someone who is important! (It's been taken care of)
I am really scared about all of this happening in my body, on top of this fear, I fear that I have lost all of you.
Have I? Do any of you know what to do if you can't take care of yourself in this way?
Red
On friday, I remember placing my hands on my calves and realizing that I had loss sensation on both calves and areas on the sides of my lower legs. I have already lost sensation in quite a few places, one of them being part of my re___m (sorry I just can't say it). The newer finding made my old fears come up magnified.
I started scouring the web looking for ways that I could retain my dignity when I become unable to do my personal care. Urine is bad enough, the possibility of not being able to control my intestines scares me to death!! Visions of my sister having to wipe my rear off makes me want to pass out. Visions of soiling myself even worse.
During my moms dementia, she was found with fecal material under her fingernails and in her hair. She was a beautiful classy woman-----what a horrible way for her life to end.
I found something that may help me but only for one toilet. Then I wondered if I could order a colostomy voluntarily.
I remember crying really hard I was alone so no one could hear me. And then I remember getting mad, especially mad too becuase I couldn't find any research about PPMS. I don't remember getting this mad after I was diagnosed.
Then I did something without thinking and hurt someone who is important! (It's been taken care of)
I am really scared about all of this happening in my body, on top of this fear, I fear that I have lost all of you.
Have I? Do any of you know what to do if you can't take care of yourself in this way?
Red
I wanted to thank you for being so frank about this. The long washcloth idea is similar to one of the methods that I had come up with out of need. The sewing them into strips will make the task easier. They say 'necessity is the mother of invention', that's for sure.
The handheld wand is something I can definately get. I'm looking into all the products.
I have never understood why we americans have an aversion to bidets. I think just about every country has them and they make perfect sense. The U.S. manufactures most of them but we don't use them.
oh well.............
Red
The handheld wand is something I can definately get. I'm looking into all the products.
I have never understood why we americans have an aversion to bidets. I think just about every country has them and they make perfect sense. The U.S. manufactures most of them but we don't use them.
oh well.............
Red
red,
everyone here has said it so perfectly, i don't have much to add, other than to reconfirm that you have my support and appreciation.
i'm so sorry you had such a lousy weekend. i know someone who is parapalegic and also wonderfully independent. surely, without a doubt, there will be many, many things to help you along the way. they are just foreign at the moment, but before long they will become new and then familiar and much, much less frightening. then you'll be a pro ready to school anyone else who needs that same knowledge.
huge hugs and hope you feel better@!!
xo michelle
everyone here has said it so perfectly, i don't have much to add, other than to reconfirm that you have my support and appreciation.
i'm so sorry you had such a lousy weekend. i know someone who is parapalegic and also wonderfully independent. surely, without a doubt, there will be many, many things to help you along the way. they are just foreign at the moment, but before long they will become new and then familiar and much, much less frightening. then you'll be a pro ready to school anyone else who needs that same knowledge.
huge hugs and hope you feel better@!!
xo michelle
Red - The Do Over, was Done Over long ago and has been forgotten by all. Your very fear than you had deeply hurt anyone is proof that you are a compassionate woman who would never willingly cause hurt. And we know your for your many compassionate posts and as a woman who adds immeasurably to our family.
You bring up a couple issues that many of us have worried about. One is soiling oneself. The other is being able to cleanse ourselves.
You got some good advice on the first one. There are bowel training programs that allow for a routine evacuation daily so that soiling is less likely to occur. These are typically used for the paralyzed, as mentioned, but I am sure there are techniques for those of us with other causes.
Last summer when we were planning to build out our basement, we planned it as if I might possibly be in a wheelchair in the future. This meant low cabinets in the kitchenette, wide hallways and doorways, low Decor wall switches, lever door handles, grab bars and a hi-boy toilet in the bathroom and a wheelbarrow shower.
During our investigation of what was out there I came across a toilet seat that acted also as a bidet and a general cleansing wash. It uses a heater so that it sprays warm water and many also have built in air blowers for self drying. The first one I found was by Toto (Japanese brand) and was about $1500. But, later I found them all the way down to about $500.
Many of us do not have room in our current bathrooms to add a bidet, so the Multifunction Seat would work well. The only thing is that you would need an electrician to bring an electrical outlet to the toilet.
I have long been using big, adult hypoallergenic wipes. I couldn't stand smelling like a baby. Too many associations that made me feel less than a capable adult. Costco - for those of you that have them available - has them in packets of 100, nine packets to the box. (Kirkland brand) Great price, though I can't remember how much right now.
I'm going to get graphic now, but only because someone might benefit from it. When I was having a great deal of back spasticity cleansing myself was very painful and difficult. Besides, I am also heavy. I made a batch of long washcloths about 18" long and 4" wide. You can use finger towels. These can be moistened and pulled back and forth.
Another wonderful thing is to attach a hand held shower "wand" to your tub or shower. I put one in my new shower and it is light and maneuverable. Just google:
shower wand
You will see a series of pictures. It is wonderful.
Also there are shower seats that are like bedside commodes only without the bucket. These make cleansing with a handheld wand even easier.
I really share your fears about depending on others for this kind of care. The good news is a LOT of people have put great thought and invention into solving the problems. I have recently now had my first episodes of stool incontinence. All I can do is say I share your fear.
Sorry about being graphic, but I hope some of this helps.
Quix
You bring up a couple issues that many of us have worried about. One is soiling oneself. The other is being able to cleanse ourselves.
You got some good advice on the first one. There are bowel training programs that allow for a routine evacuation daily so that soiling is less likely to occur. These are typically used for the paralyzed, as mentioned, but I am sure there are techniques for those of us with other causes.
Last summer when we were planning to build out our basement, we planned it as if I might possibly be in a wheelchair in the future. This meant low cabinets in the kitchenette, wide hallways and doorways, low Decor wall switches, lever door handles, grab bars and a hi-boy toilet in the bathroom and a wheelbarrow shower.
During our investigation of what was out there I came across a toilet seat that acted also as a bidet and a general cleansing wash. It uses a heater so that it sprays warm water and many also have built in air blowers for self drying. The first one I found was by Toto (Japanese brand) and was about $1500. But, later I found them all the way down to about $500.
Many of us do not have room in our current bathrooms to add a bidet, so the Multifunction Seat would work well. The only thing is that you would need an electrician to bring an electrical outlet to the toilet.
I have long been using big, adult hypoallergenic wipes. I couldn't stand smelling like a baby. Too many associations that made me feel less than a capable adult. Costco - for those of you that have them available - has them in packets of 100, nine packets to the box. (Kirkland brand) Great price, though I can't remember how much right now.
I'm going to get graphic now, but only because someone might benefit from it. When I was having a great deal of back spasticity cleansing myself was very painful and difficult. Besides, I am also heavy. I made a batch of long washcloths about 18" long and 4" wide. You can use finger towels. These can be moistened and pulled back and forth.
Another wonderful thing is to attach a hand held shower "wand" to your tub or shower. I put one in my new shower and it is light and maneuverable. Just google:
shower wand
You will see a series of pictures. It is wonderful.
Also there are shower seats that are like bedside commodes only without the bucket. These make cleansing with a handheld wand even easier.
I really share your fears about depending on others for this kind of care. The good news is a LOT of people have put great thought and invention into solving the problems. I have recently now had my first episodes of stool incontinence. All I can do is say I share your fear.
Sorry about being graphic, but I hope some of this helps.
Quix
JJ, Sarah and D,
I treasure all of you and consider myself to be fortunate to know you and to be a part of this community. This is what life is meant to be, people caring about each other through thick and thin and seeing the best in people.
Thank you for letting me vent and cry and begin to settlle into this disease that wants to take so much.
It's an amazing thing that we can share these things together. We are in this together.
And I want to be here for all of you too
All of you are gems------now we move forward
Hugs, Red
I treasure all of you and consider myself to be fortunate to know you and to be a part of this community. This is what life is meant to be, people caring about each other through thick and thin and seeing the best in people.
Thank you for letting me vent and cry and begin to settlle into this disease that wants to take so much.
It's an amazing thing that we can share these things together. We are in this together.
And I want to be here for all of you too
All of you are gems------now we move forward
Hugs, Red
I am so glad I found this post because I would kick myself if I didn't get the opportunity to tell you how wonderful you are.
You are going through so much and are yet one of the most supportive of others on this forum. We would never be the same if you hadn't joined us.
I think you are really taking HUGE steps in the right direction. This disease is SOOOOO scary and the reality of what we are up against can be a nightmare. You opening up to us and asking for advice and sharing your fears is definately a great step. I know leaps and bounds are something most of us can no longer accomplish so take the steps you can :)
You are a beautiful woman both inside and out, and as you have seen through my ranting posts, sometimes things we say get ugly, but we need to get them out. I think (unfortunately for the people here) I have found this forum one of my most healthy release places and the things I say are always understood and forgiven.
I like to think that when we are not physically able to support people and do charity work, that mentally supporting people is a healthy way for us to feel important, and you do that for us here, so PLEASE PLEASE know how important you are :)
Lots of hugs and love
D
You are going through so much and are yet one of the most supportive of others on this forum. We would never be the same if you hadn't joined us.
I think you are really taking HUGE steps in the right direction. This disease is SOOOOO scary and the reality of what we are up against can be a nightmare. You opening up to us and asking for advice and sharing your fears is definately a great step. I know leaps and bounds are something most of us can no longer accomplish so take the steps you can :)
You are a beautiful woman both inside and out, and as you have seen through my ranting posts, sometimes things we say get ugly, but we need to get them out. I think (unfortunately for the people here) I have found this forum one of my most healthy release places and the things I say are always understood and forgiven.
I like to think that when we are not physically able to support people and do charity work, that mentally supporting people is a healthy way for us to feel important, and you do that for us here, so PLEASE PLEASE know how important you are :)
Lots of hugs and love
D
Dearest Lois
We habe become friends during the last 6 months and I really value our friendship and have sent you a message.
Your honesty in your post has touched everyone who read it, there is no forgiveness to be given as you just had a moment at the weekend when you vented and then regretted it. If I had a dollar/pound for the number of times I have said or done something I regretted I would be a rich woman. The important thing is that you took action and did something about it and there are no unresolved feelings now so well done.
You are reaching out to us by sharing personal fears that I am sure are there for us all.
This helps other people share their own fears too and I will be right up there with you saying that losing control in all ways is a deep fear for me too.
Take comfort from the words your friends have already said. I can feel the love and support from everyone and it is obvious that you are deeply respected and understood.
So it is a new week, pick yourself up, give yourself a treat of some sort and take courage. You have had a huge amount to cope with and a more recent dx than me which was a shock and is now beginning to sink in. Allow yourself time to wallow and grieve but don't feel that you have to do it alone.
WIth masses of love and big big hugs
Sarah xxxx
We habe become friends during the last 6 months and I really value our friendship and have sent you a message.
Your honesty in your post has touched everyone who read it, there is no forgiveness to be given as you just had a moment at the weekend when you vented and then regretted it. If I had a dollar/pound for the number of times I have said or done something I regretted I would be a rich woman. The important thing is that you took action and did something about it and there are no unresolved feelings now so well done.
You are reaching out to us by sharing personal fears that I am sure are there for us all.
This helps other people share their own fears too and I will be right up there with you saying that losing control in all ways is a deep fear for me too.
Take comfort from the words your friends have already said. I can feel the love and support from everyone and it is obvious that you are deeply respected and understood.
So it is a new week, pick yourself up, give yourself a treat of some sort and take courage. You have had a huge amount to cope with and a more recent dx than me which was a shock and is now beginning to sink in. Allow yourself time to wallow and grieve but don't feel that you have to do it alone.
WIth masses of love and big big hugs
Sarah xxxx
COMMUNITY LEADER
Hey Red,
You are being brave and proactive mentioning one of your fears, you are not alone with this one, many others like you are sensitive mentioning this issue not only to our dr's but also to our selves. I do understand where your coming from, dignity is not something i want to loose but have more than I care to remember needed to shut down my pride and speak seek help.
I still have feeling to a degree down in my privates but need help due to the persistent tremors that makes toileting problematic, menstral times and bowel movements are somewhat dreaded, I dont think i need go into details, i'm sure you'll get the picture :-(
Not that it helps much but i'm trialing none allergenic baby wipes, I dont know what else to do though i am sorry for your situation and wish I had more solutions to offer!
[[[[[[[[[Hugs]]]]]]]]]]
JJ
You are being brave and proactive mentioning one of your fears, you are not alone with this one, many others like you are sensitive mentioning this issue not only to our dr's but also to our selves. I do understand where your coming from, dignity is not something i want to loose but have more than I care to remember needed to shut down my pride and speak seek help.
I still have feeling to a degree down in my privates but need help due to the persistent tremors that makes toileting problematic, menstral times and bowel movements are somewhat dreaded, I dont think i need go into details, i'm sure you'll get the picture :-(
Not that it helps much but i'm trialing none allergenic baby wipes, I dont know what else to do though i am sorry for your situation and wish I had more solutions to offer!
[[[[[[[[[Hugs]]]]]]]]]]
JJ
Julie, Mike, Audrey, Lulu, and Sumana thank you for hearing me and reminding me that one event doesn’t define me. You helped ground me and feel supported and cared for. Just as Lulu said, It’s time to move on---move forward and that’s what I will do.!!!
Audrey, a bidet system is one of the things I am looking at.
Big Hugs to all
Red
Audrey, a bidet system is one of the things I am looking at.
Big Hugs to all
Red
Red, we waste so much precious energy and resources when we get consumed with things from the past - it is time to move on from this, knowing that everything is ok here. That will free up the time to enjoy today and make tentative plans for tomorrow.
Your concerns are justified - it is hard to think of the worse case scenarios all of us face, but we all do it. You are doing what I advocate to everyone all the time - knowledge is power and you are empowering yourself with all the advance research.
So please place your right arm on your left shoulder and your left arm on your right shoulder and give yourself the biggest hug possible .... Do this over and over until you have given yourself a hug from each and every one of us here.
We''re with you, Red.
Lulu
Your concerns are justified - it is hard to think of the worse case scenarios all of us face, but we all do it. You are doing what I advocate to everyone all the time - knowledge is power and you are empowering yourself with all the advance research.
So please place your right arm on your left shoulder and your left arm on your right shoulder and give yourself the biggest hug possible .... Do this over and over until you have given yourself a hug from each and every one of us here.
We''re with you, Red.
Lulu
Beautiful Red. I have written you privately on my feelings. You are a very kind woman.
Hugs
Sumana
Hugs
Sumana
Talk about baring one's soul. Your post is one of the most poignant ones that I have read on this forum, and it gave me goose bumps.
We all have our weak moments when we act out in ways that we wish we hadn't. It's important to recognize that you are human and forgive yourself. As others have commented, it is apparent that you are a very caring person.
Fear. Yours is a rational one and magnified by your experience with your mother. You mentioned that you have found a solution for one toilet; have you considered a bidet? They are very common in Europe and designed to do exactly what you want. Of course this will only work in the comfort of your own home, as you can't exactly carry a bidet around with you.
Pleas be kind to yourself.
Sending the biggest hug possible to you,
Audrey
We all have our weak moments when we act out in ways that we wish we hadn't. It's important to recognize that you are human and forgive yourself. As others have commented, it is apparent that you are a very caring person.
Fear. Yours is a rational one and magnified by your experience with your mother. You mentioned that you have found a solution for one toilet; have you considered a bidet? They are very common in Europe and designed to do exactly what you want. Of course this will only work in the comfort of your own home, as you can't exactly carry a bidet around with you.
Pleas be kind to yourself.
Sending the biggest hug possible to you,
Audrey
Ditto what everyone else has said here.
You come accross as a very caring, helpful person, and I'm glad you're a part of our forrum family!
I'm sure you haven't lost anyone.
Be welel my friend!
Mike
You come accross as a very caring, helpful person, and I'm glad you're a part of our forrum family!
I'm sure you haven't lost anyone.
Be welel my friend!
Mike
Red,
I am new here but I have quite a bit of life experience and have read quite a few of your posts. You are a quality woman in every way! None of us are perfect and we all make mistakes. You have done what you have needed to do and now you can forgive your self.
There isn't a person here who cannot relate to the fear you are feeling or the need to want to lash out. We are all facing uncertainty when I comes to our health and future care. Cry, scream, rage, let it all out. Then pick yourself up and get educated and that will help you the most in dealing with your fears.
I am so sorry you are going through this. Although we are not with you in body, we are with you in thought. Know that you have friends who care about you and are here to help in whatever way we can.
Julie
I am new here but I have quite a bit of life experience and have read quite a few of your posts. You are a quality woman in every way! None of us are perfect and we all make mistakes. You have done what you have needed to do and now you can forgive your self.
There isn't a person here who cannot relate to the fear you are feeling or the need to want to lash out. We are all facing uncertainty when I comes to our health and future care. Cry, scream, rage, let it all out. Then pick yourself up and get educated and that will help you the most in dealing with your fears.
I am so sorry you are going through this. Although we are not with you in body, we are with you in thought. Know that you have friends who care about you and are here to help in whatever way we can.
Julie
Helen thank you for your magic wand, I do feel the magic around me now!
Mary, thank you for remembering my history. I do think the reality is starting to sink in now. I have been looking at a site for paralyzed people to see what they are using. There are some interesting products and am still researching. I did have a Rehab Spec.. but am going to ask for a physiatrist. As far as the dexterity and control, it’s some of both. Our chat will really help!
Jess, thank you so much—you are so sweet!
Ess, I will go look—you aren’t ditzy at all!
Mary, thank you for remembering my history. I do think the reality is starting to sink in now. I have been looking at a site for paralyzed people to see what they are using. There are some interesting products and am still researching. I did have a Rehab Spec.. but am going to ask for a physiatrist. As far as the dexterity and control, it’s some of both. Our chat will really help!
Jess, thank you so much—you are so sweet!
Ess, I will go look—you aren’t ditzy at all!
Red.
Everyone says things that at times that they regret later. The most important thing is that you said you took care of the situation and that is a good thing.
I am so sorry to hear that you are having more problems. I wish I could wave a magic wand so that you and everyone's problems would dissapear.
Don't worry about losing everyone here. True friends will stick by your side and you have been a big support for many of us around here.
(((HUGS)))
Paula
Everyone says things that at times that they regret later. The most important thing is that you said you took care of the situation and that is a good thing.
I am so sorry to hear that you are having more problems. I wish I could wave a magic wand so that you and everyone's problems would dissapear.
Don't worry about losing everyone here. True friends will stick by your side and you have been a big support for many of us around here.
(((HUGS)))
Paula
Oh Red!
You have been such a great support for me, and I'm sure many others. One bad day/weekend/ week will not and cannot erase that! We are all friends here, and we have the added bond of having a greater chance of understanding the fear and emotions that come along with MS.
((hugs)) my friend.
~Jess
You have been such a great support for me, and I'm sure many others. One bad day/weekend/ week will not and cannot erase that! We are all friends here, and we have the added bond of having a greater chance of understanding the fear and emotions that come along with MS.
((hugs)) my friend.
~Jess
Hey Red. You are having an especially hard time this week-end! We all understand that. You haven't lost anyone. It's just been one of those extra slow weekends around here. People must be out enjoying one of the last few weekends of the summer and getting ready to ramp up for the school year again.
If I remember your history correctly you have lived through a truckload of losses in the past year. You may have suspected MS but you have only very recently been diagnosed and are observing some very troubling progressive symptoms. I'm betting that you are just beginning to move into the place where reality is slapping you up side the head.
I applaude you for looking now for solutions you may need to implement in the future. There isn't always time for a lot of research once new difficulties present themselves.
Since there are many, many people with spinal cord injuries living independently, there are solutions to be found to your potential future problems. Bladder, bowel and skin care routines are a part of their daily care that the average person doesn't even wonder about. They don't realize it's a problem and don't wonder about how it's solved.
I suggest you look at sites and blogs where there are spinal cord injured people or talk to rehabilitation specialists. Didn't you see a physiatrist in the past? Does he work with SCI patients? I'm afraid though that you are going to have to learn to talk about basic bodily functions in order to find out how to handle this in the future.
Now, I'm not sure if you are most concerned about losing control of bowel function or if the bigger worry is about dexterity and whether you will be able to maneuver tools and reach all the necessary places. Perhaps online isn't the best place to explain or begin to practice using uncomfortable termonology. With that in mind, I'll go private now.
Others will be along soon to assure you that you are still a member in good standing of the bestest little MS internet community to be found.
Mary
If I remember your history correctly you have lived through a truckload of losses in the past year. You may have suspected MS but you have only very recently been diagnosed and are observing some very troubling progressive symptoms. I'm betting that you are just beginning to move into the place where reality is slapping you up side the head.
I applaude you for looking now for solutions you may need to implement in the future. There isn't always time for a lot of research once new difficulties present themselves.
Since there are many, many people with spinal cord injuries living independently, there are solutions to be found to your potential future problems. Bladder, bowel and skin care routines are a part of their daily care that the average person doesn't even wonder about. They don't realize it's a problem and don't wonder about how it's solved.
I suggest you look at sites and blogs where there are spinal cord injured people or talk to rehabilitation specialists. Didn't you see a physiatrist in the past? Does he work with SCI patients? I'm afraid though that you are going to have to learn to talk about basic bodily functions in order to find out how to handle this in the future.
Now, I'm not sure if you are most concerned about losing control of bowel function or if the bigger worry is about dexterity and whether you will be able to maneuver tools and reach all the necessary places. Perhaps online isn't the best place to explain or begin to practice using uncomfortable termonology. With that in mind, I'll go private now.
Others will be along soon to assure you that you are still a member in good standing of the bestest little MS internet community to be found.
Mary
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