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Emotional toll from MS
Hi everyone!
My name is Criss, 30 year old wife and mother of 2 children (3yrs and 1yrs..yes I am busy!) I was diagnosed with MS about a month ago. I have been reading all your posts for about 3 weeks now. It is such a comfort to know that I am not the only one living with the same issues.
My medical history reads almost exact to most of yours.."suffered for years, one incorrect diagnosis after another, doctor visits, meds, meds, meds with no relief" When I was 18yrs I was diagnosed with scoliosis and had spinal surgery to correct which has left me with 3 HUGE screws and 2 rods in my back. Needless to say, most of my MS symptoms were blamed on this for many years.
So here I am..I can understand a lot of you who feel relief when they pin pointed the cause of your misery. Of course my whole family kind of has the same response. When they say this I nod my head and say "of course..it is a relief to know what we are dealing with and how to treat it" but honestly, I don't really feel that way. I am ANGRY..I am not sure how to deal with this anger. I am angry at all the docs who didn't catch this before, who gave me a bunch of meds I didn't need or worse tell me to go to a psychiatrist. I am angry at my body for turning against me, and worst of all (and I am sure there are some of you who feel the same but never said) I am angry at healthy people! I know the last part sounds selfish and ridiculous but I can't help it. Everyone keep saying "look on the bright side: at least it's not cancer or something fatal" but I just can't help these feelings.
Am I the only person with MS who feels this way??
Angry and quilty,
Criss
My name is Criss, 30 year old wife and mother of 2 children (3yrs and 1yrs..yes I am busy!) I was diagnosed with MS about a month ago. I have been reading all your posts for about 3 weeks now. It is such a comfort to know that I am not the only one living with the same issues.
My medical history reads almost exact to most of yours.."suffered for years, one incorrect diagnosis after another, doctor visits, meds, meds, meds with no relief" When I was 18yrs I was diagnosed with scoliosis and had spinal surgery to correct which has left me with 3 HUGE screws and 2 rods in my back. Needless to say, most of my MS symptoms were blamed on this for many years.
So here I am..I can understand a lot of you who feel relief when they pin pointed the cause of your misery. Of course my whole family kind of has the same response. When they say this I nod my head and say "of course..it is a relief to know what we are dealing with and how to treat it" but honestly, I don't really feel that way. I am ANGRY..I am not sure how to deal with this anger. I am angry at all the docs who didn't catch this before, who gave me a bunch of meds I didn't need or worse tell me to go to a psychiatrist. I am angry at my body for turning against me, and worst of all (and I am sure there are some of you who feel the same but never said) I am angry at healthy people! I know the last part sounds selfish and ridiculous but I can't help it. Everyone keep saying "look on the bright side: at least it's not cancer or something fatal" but I just can't help these feelings.
Am I the only person with MS who feels this way??
Angry and quilty,
Criss
Thank you all so much for your amazing responses. You have have taken more time to encourage me then alot of my family members have..(DH is amazing..but he is in the "I just want to help you fix it, what can I do stage". I have tried talking to him a little about my frustrations and anger but thankfully he is a glass half full kinda guy..so he doesn't have much understanding/patience for my just being mad as hell!! =)
Thanks again for your understanding and warm welcome and I am sure you will be see much more from me!
XOXO
Criss
Thanks again for your understanding and warm welcome and I am sure you will be see much more from me!
XOXO
Criss
Wow can you feel the anger other people have on this site and look how your post has already helped others express their feelings.
So you have joined a great forum, and I have only been posting myself since March when I was dx'd with RRMS (aged 46) and already feel that I have made some great friends who I can lean on and be open and honest with.
I am geuninely sorry for you to have received this dx when you have two such young kids. You have been aware that something was not right for so long and now have found out that indeed you have this MiSerable condition and so your reaction is completely understandable. It will have pushed all your buttons and your anger has been unleashed like a cork exploding from a bottle.
Thre is nothing wrong with anger and it is an energy that we all have capacity to feel. However how we express it is the important thing and it is far better out than in. The tendency is to take it out on your loved ones and this may be your little ones, or their Dad or anyone around you. So far better to come on the forum where you can scream and shout and find others who take you seriously and understand.
It sometimes helps to do something physical to get rid of the adrenaline that sometimes accompanies anger, or some people find expressing it in a more creative way can help such as writing, poetry or painting. I sometimes suggest using fabric pens and writing/drawing on a pillowcase anything that makes you angry and then putting the pillow inside and giving it a good pummellling (if you have the energy) to get rid of anger. You can also have a happy side if you so wish!
I too have felt angry for many of the same reasons as you as life does not feel fair and I know that I am not alone in having had my fair share of serious challenges to face in life
But I have now reached a calmer place as for me I hare found that being angry uses up too much energy, blaming others often does not achieve anything unless you are able to assertively express yourself face to face, and sitting on the fence looking backwards getting stuck in a pile of resentment will not change the past. So my advice is not to ignore your anger, but to celebrate it...it is a well deserved feeling and it may be helpful for you to find someone to talk all this through with. You certainly do not need a psychiatrist but there is nothing wrong with admitting that it helps to talk to someone from outside the family.
Try and enjoy your lovely kids and you may find that your anger towards healthy people subsides and when people say the wrong thing such as "at least it is not cancer" they are tryiing to help and often do not understand the overwhelming shock of receiving a lifetime dx of an incurable condition.
The 5 stages of grief that were mentioned are denial, anger, bargaining, depression and acceptance and they are relevfant as this dx is an enormous loss..although it is different to a bereavement. I do not think that everyone will experience all of these stages and we are all individuals who cope with anything in different ways.
So enough from me and welcome once again. Do not ever feel guilty for your feelings - they are real and your own.
With love and a big,big hug - you deserve it.
Sarah x :)
So you have joined a great forum, and I have only been posting myself since March when I was dx'd with RRMS (aged 46) and already feel that I have made some great friends who I can lean on and be open and honest with.
I am geuninely sorry for you to have received this dx when you have two such young kids. You have been aware that something was not right for so long and now have found out that indeed you have this MiSerable condition and so your reaction is completely understandable. It will have pushed all your buttons and your anger has been unleashed like a cork exploding from a bottle.
Thre is nothing wrong with anger and it is an energy that we all have capacity to feel. However how we express it is the important thing and it is far better out than in. The tendency is to take it out on your loved ones and this may be your little ones, or their Dad or anyone around you. So far better to come on the forum where you can scream and shout and find others who take you seriously and understand.
It sometimes helps to do something physical to get rid of the adrenaline that sometimes accompanies anger, or some people find expressing it in a more creative way can help such as writing, poetry or painting. I sometimes suggest using fabric pens and writing/drawing on a pillowcase anything that makes you angry and then putting the pillow inside and giving it a good pummellling (if you have the energy) to get rid of anger. You can also have a happy side if you so wish!
I too have felt angry for many of the same reasons as you as life does not feel fair and I know that I am not alone in having had my fair share of serious challenges to face in life
But I have now reached a calmer place as for me I hare found that being angry uses up too much energy, blaming others often does not achieve anything unless you are able to assertively express yourself face to face, and sitting on the fence looking backwards getting stuck in a pile of resentment will not change the past. So my advice is not to ignore your anger, but to celebrate it...it is a well deserved feeling and it may be helpful for you to find someone to talk all this through with. You certainly do not need a psychiatrist but there is nothing wrong with admitting that it helps to talk to someone from outside the family.
Try and enjoy your lovely kids and you may find that your anger towards healthy people subsides and when people say the wrong thing such as "at least it is not cancer" they are tryiing to help and often do not understand the overwhelming shock of receiving a lifetime dx of an incurable condition.
The 5 stages of grief that were mentioned are denial, anger, bargaining, depression and acceptance and they are relevfant as this dx is an enormous loss..although it is different to a bereavement. I do not think that everyone will experience all of these stages and we are all individuals who cope with anything in different ways.
So enough from me and welcome once again. Do not ever feel guilty for your feelings - they are real and your own.
With love and a big,big hug - you deserve it.
Sarah x :)
Hi, and welcome.
I totally understand your anger. My main anger is directed at my mother, who is 80 (I am 48). She has never had anything seriously wrong with her in her entire life. Every year she spends 10s of 1000s on overseas trips (I am in Australia so all travel is long distance and expensive)
FOr the 3 years of symptoms without diagnosis, she delcared me depressed and said, go for a walk and you'll feel better. She refused, absolutely REFUSED to look at my MRI scans and the "extenisive" lesions.
When I finally got my diagnosis, instead of being a nice Mum, she started moaning because she is on blood pressure medication. I blew my stack at her. I said, for god's sake woman, you are 80 years old, you are packing for your next holiday to Italy, while I am flat out going to the local shop!
She is also scabby with money - as I said, blows tons on holidays but is so tight fisted all she's done to help me is give me some old clothes of hers, datin gback to the 1980s. Woopeee!
yeah, I get your anger. :P
I totally understand your anger. My main anger is directed at my mother, who is 80 (I am 48). She has never had anything seriously wrong with her in her entire life. Every year she spends 10s of 1000s on overseas trips (I am in Australia so all travel is long distance and expensive)
FOr the 3 years of symptoms without diagnosis, she delcared me depressed and said, go for a walk and you'll feel better. She refused, absolutely REFUSED to look at my MRI scans and the "extenisive" lesions.
When I finally got my diagnosis, instead of being a nice Mum, she started moaning because she is on blood pressure medication. I blew my stack at her. I said, for god's sake woman, you are 80 years old, you are packing for your next holiday to Italy, while I am flat out going to the local shop!
She is also scabby with money - as I said, blows tons on holidays but is so tight fisted all she's done to help me is give me some old clothes of hers, datin gback to the 1980s. Woopeee!
yeah, I get your anger. :P
I too want to add my Welcome to the MS Forum, Just sorry that you have to be here!
I was dx in November of last year. Everyone of your feelings.....I Feel Too! Still...
We can take some of that anger and become Pro-Active in our Community by getting the word out about MS, Joining a Support Group, Help to raise money for MS Awareness through Various Walks, Runs, and so on.
You can go to the National Multiple Sclerosis Society and get info on all of that.
Something MS CAN NOT take away from you though are your Memories w/ your children, family, and good friends. Take Lots of Pictures and Videos..They are Priceless! Do what you can when you can and you will learn to know your limits..
No Worries, Everything is going to be Alright :)
~Tonya
Greetings and a big welcome from me, too.
Anger falls in there somewhere around disbelief and denial. We all have it, and as Erin said, it will cycle around. Just when you think you have made peace with this and gotten on with your life, something else will happen to set-off some unwanted emotion/reaction.
Your medical people haven't said it, so let me -
I am so sorry your diagnosis was not made on time.
I am so sorry you had major surgery that may not have been necessary.
I am so sorry you were made to feel insignificant, a whiner, and a malinger.
Most of all, I am sorry that you have MS.
I'm not sorry that you have found us here - we're always a good shoulder to lean on. A whole bunch of ears to listen. And even the occassional kick in the rump to get out there and be proactive. It's many of the things we need over and over and over.
Your girls will have their mom for a long time (our life spans are just about that of the healthy population) - so enjoy every moment with them because before you know it they will be going to college and getting married. It happens too fast. You will find ways to make your own special memories with them, once you learn to live under the same roof as this disease.
Welcome again!
Lulu
Anger falls in there somewhere around disbelief and denial. We all have it, and as Erin said, it will cycle around. Just when you think you have made peace with this and gotten on with your life, something else will happen to set-off some unwanted emotion/reaction.
Your medical people haven't said it, so let me -
I am so sorry your diagnosis was not made on time.
I am so sorry you had major surgery that may not have been necessary.
I am so sorry you were made to feel insignificant, a whiner, and a malinger.
Most of all, I am sorry that you have MS.
I'm not sorry that you have found us here - we're always a good shoulder to lean on. A whole bunch of ears to listen. And even the occassional kick in the rump to get out there and be proactive. It's many of the things we need over and over and over.
Your girls will have their mom for a long time (our life spans are just about that of the healthy population) - so enjoy every moment with them because before you know it they will be going to college and getting married. It happens too fast. You will find ways to make your own special memories with them, once you learn to live under the same roof as this disease.
Welcome again!
Lulu
COMMUNITY LEADER
Hi and another welcome to our little corner,
I too am sorry for your dx, life sure sux sometimes! Anger is perfectly normal, have you read about the 5 stages of grief, it might be worth checking out as it can be helpful to understand where its coming from and also to give you a head up for whats expected to come next. Not everyone goes through it exactly the same but it will give you some guidance I think.
I've always easily laughed at the absurd and ridiculous, just call me absurd and rediculous lol laughing has got me through some pretty tough times so I highly recommend finding your funny so much harder to stay mad or even sad, when your laughing your self silly.
Cheers........JJ
PS I'm not dx yet and can't help being mad at the medical world for being in limbo.
I too am sorry for your dx, life sure sux sometimes! Anger is perfectly normal, have you read about the 5 stages of grief, it might be worth checking out as it can be helpful to understand where its coming from and also to give you a head up for whats expected to come next. Not everyone goes through it exactly the same but it will give you some guidance I think.
I've always easily laughed at the absurd and ridiculous, just call me absurd and rediculous lol laughing has got me through some pretty tough times so I highly recommend finding your funny so much harder to stay mad or even sad, when your laughing your self silly.
Cheers........JJ
PS I'm not dx yet and can't help being mad at the medical world for being in limbo.
Welcome to the forum :)
I'm sorry that you are in the newly dx anger faze. Have you gone through the sad and feeling sorry for yourself faze? Well I prob shouldn't say faze because in truth a faze is something that goes away and I have found that with MS things don't really go away they just run in cycles.
I was told through my journey that it was all in my head like a lot of people and when I got my first MRI that showed a huge lesion my father & I made jokes like I guess it really was all in my head the whole time, lol. Jokes help but venting your frustration helps to so remember that you have found someplace where you are understood.
Take care of yourself and cut yourself some slack - you deserve to feel any emotion that you have and process the changes in your life.
Hugs,
Erin :)
Hello, Criss---Welcome to our world, and our forum!
Your feelings are perfectly normal. Just let yourself experience them, without any self-castignation. Other people are so good at telling us what we should be grateful for, without the slightest idea of what our lives are like.
Not that it's a total wreck, of course, but illness in theory and illness in fact are two entirely different ballgames. That's one of the many good things about this forum. We actually do understand, been there, done that.
I too am very resentful of the fact that I was undiagnosed/misdiagnosed for years. I recently have learned that I've had MS much longer than I'd been told, as much as 8 or 10 years longer. That could have made a big difference, but I'll never know.
Give yourself time to assimilate all this, and while you do that, take a look at our Health Pages, and ask as many questions as you'd like. Once you've come to terms a bit more, tell us what treatment options you've decided on..
We're here in friendship too. Please keep in touch.
ess
Your feelings are perfectly normal. Just let yourself experience them, without any self-castignation. Other people are so good at telling us what we should be grateful for, without the slightest idea of what our lives are like.
Not that it's a total wreck, of course, but illness in theory and illness in fact are two entirely different ballgames. That's one of the many good things about this forum. We actually do understand, been there, done that.
I too am very resentful of the fact that I was undiagnosed/misdiagnosed for years. I recently have learned that I've had MS much longer than I'd been told, as much as 8 or 10 years longer. That could have made a big difference, but I'll never know.
Give yourself time to assimilate all this, and while you do that, take a look at our Health Pages, and ask as many questions as you'd like. Once you've come to terms a bit more, tell us what treatment options you've decided on..
We're here in friendship too. Please keep in touch.
ess
You are definitely not alone. I am not yet dx'd. I also have 2 children and I feel so guilty everyday over all the things we used to do together that mommy can't do with them anymore. I also get very angry sometimes wondering why God would allow this to happen to me. I get angry when I think of all that I did with my kids just a couple of years ago and how little I do now. I drive so little now that I basically just say that I no longer drive. This is partially d/t the pain and numbness, but mostly d/t the extreme fatigue/brain fog - it hits me like a brick wall, no warning. It has been a huge adjustment, I so fear not being here for my children, so I am also thankful that I don't have something terminal.
Nope, you are not alone......I feel the same way - but only occasionally - thankfully not every day is an "angry" day.
The thing that frustrates me the most is not being able to walk very far without my legs just about completely giving out underneath me. I also have horrible balance on some days and walk like a drunk - swaying back and forth no matter how hard I concentrate on walking straight. My stupid feet are numb pretty much all the time as well.
I too am angry at the other neuro whom told me just a few months ago that it is definately not ms and not my back!
I am going to have to get a cane and that at 31 both completely embarrasses and angers me.
I think it is perfectly fine and normal to have these feelings - just try to make sure the angry days don't outweigh the good ones and if they do - perhaps time to talk to the dr. they say depression can come out in the form of anger.
Thanks for saying so many things I think we all feel at some time or another and for letting me vent.
Take care
Marty
The thing that frustrates me the most is not being able to walk very far without my legs just about completely giving out underneath me. I also have horrible balance on some days and walk like a drunk - swaying back and forth no matter how hard I concentrate on walking straight. My stupid feet are numb pretty much all the time as well.
I too am angry at the other neuro whom told me just a few months ago that it is definately not ms and not my back!
I am going to have to get a cane and that at 31 both completely embarrasses and angers me.
I think it is perfectly fine and normal to have these feelings - just try to make sure the angry days don't outweigh the good ones and if they do - perhaps time to talk to the dr. they say depression can come out in the form of anger.
Thanks for saying so many things I think we all feel at some time or another and for letting me vent.
Take care
Marty
Hi Criss, I don't blame you for being mad!! You should be mad--it's not fair and you are so young. It would be so hard to look at healthy people right now, must be like looking at who you used to be.
Anger is a part of the grieving period and it's a very important part. You have to let the anger out in some way, probably several ways.
I'm sorry to hear you have been diagnosed. You have found a wonderful support forum here though. People here will stand by you and be a place to lean on.
Welcome to the forum.
Red
This i
Anger is a part of the grieving period and it's a very important part. You have to let the anger out in some way, probably several ways.
I'm sorry to hear you have been diagnosed. You have found a wonderful support forum here though. People here will stand by you and be a place to lean on.
Welcome to the forum.
Red
This i
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