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How do you LIVE with MS?
I just joined this community today. I was diagnosed with MS in April 2010. My first symptoms showed up in January. I woke up with my left side numb. Got in to see the Dr. right away.
I am on medication, but I have a difficult time keeping a good attitude. I think I could figure things out if every day was the same! However it is not. It drives me CRAZY as I never know how each day will go. Will I be tired? Will my legs suddenly weigh 500 lbs each? Will I have tremors? etc. I really want to know how you keep a positive and upbeat attitude.
Thanks,
Naomi
I am on medication, but I have a difficult time keeping a good attitude. I think I could figure things out if every day was the same! However it is not. It drives me CRAZY as I never know how each day will go. Will I be tired? Will my legs suddenly weigh 500 lbs each? Will I have tremors? etc. I really want to know how you keep a positive and upbeat attitude.
Thanks,
Naomi
Once again, thank you all for responding. I really appreciate it. Truly. :-) I will pull myself out of bed every morning and put on my happy face. I will find some joy each and every day. I am going to post a question "Have you found your joy today." As I read these postings, I am terrified of what is to come. Yes, I understand that all of our journeys will be different, but some of us will share symptoms. For me, I will focus on what is good and deal with the other as they come on.
I really love that I can say what I feel here in this place, not be judged or critized that I need to "Buck Up". Only people who have experienced this type of thing can understand how I feel. So, thank you all for sharing. You have all given me something to think about. However, I believe it is time for me to put this behind me. I have to get out of the pity pitt now and enjoy my life which I will do to the best of my ability.
Thank you all again. Now lets share our joy. Watch for my post. :-)
-Naomi
I really love that I can say what I feel here in this place, not be judged or critized that I need to "Buck Up". Only people who have experienced this type of thing can understand how I feel. So, thank you all for sharing. You have all given me something to think about. However, I believe it is time for me to put this behind me. I have to get out of the pity pitt now and enjoy my life which I will do to the best of my ability.
Thank you all again. Now lets share our joy. Watch for my post. :-)
-Naomi
I'm in the BYLSG club (But You Look So Good). I still work 2 - 3 days a week, and do Yoga and ride my bike when balance isn't an issue. But, truth be told, I feel cruddy a good deal of the time, and I've lost the ability to perform. Working more than 3 days a week is out of the question. I just don't have the strength any more.
I, too take it one day at a time, and that would go for me even if I weren't diagnosed with MS. The new feature is that I try to always have a "plan B" for my daily activities that I've planned.
I, too take it one day at a time, and that would go for me even if I weren't diagnosed with MS. The new feature is that I try to always have a "plan B" for my daily activities that I've planned.
I have had MS for 18 years now. I was diagnosed to have vasculitis earlier but in 2008 my new neurologist told me it was MS. There was no problem accepting the diagnosis as I had already told myself that I would live with my head held high, regardless of what the disease was. And, the symptoms of both vasculitis and MS are very similar.
My first experience with this illness was paralysis to the right side of my body, the second loss of speech (which came back later), and the third fainting and falling face flat and losing two teeth and breaking my upper jawbone, followed by paralysis to the left side.
In between these three episodes (and even now), I have all sorts of weird symptoms, aches, pains and what not, for which I consult neurologists. They usually prescribe steroids - it gives me some respite. However, I am gaining weight now, which I am told is a side effect. The least of my worries! :D
I am on antidepressants, anti-coagulants, anti-seizure drugs, all of which have side effects, such as acidity etc.
However, what keep me going is a wonderful mother and brother and the fact that I am still able to function normally. Every morning I drag myself from bed, keep my chin up and go about my day.
The in-between symptoms and illnesses mean that I am unable to work regularly. That hurts sometimes because I am a trained social worker and journalist. I am unemployed now but am hoping that 2011 will bring some meaningful work my way. Fingers crossed!
For all of you who have written here - thank you!
I am new here and find the act of writing so much about myself therapeutic!
God bless!
My first experience with this illness was paralysis to the right side of my body, the second loss of speech (which came back later), and the third fainting and falling face flat and losing two teeth and breaking my upper jawbone, followed by paralysis to the left side.
In between these three episodes (and even now), I have all sorts of weird symptoms, aches, pains and what not, for which I consult neurologists. They usually prescribe steroids - it gives me some respite. However, I am gaining weight now, which I am told is a side effect. The least of my worries! :D
I am on antidepressants, anti-coagulants, anti-seizure drugs, all of which have side effects, such as acidity etc.
However, what keep me going is a wonderful mother and brother and the fact that I am still able to function normally. Every morning I drag myself from bed, keep my chin up and go about my day.
The in-between symptoms and illnesses mean that I am unable to work regularly. That hurts sometimes because I am a trained social worker and journalist. I am unemployed now but am hoping that 2011 will bring some meaningful work my way. Fingers crossed!
For all of you who have written here - thank you!
I am new here and find the act of writing so much about myself therapeutic!
God bless!
Truly, sister, I have no words for the horror you lived as a child. No child should have to live under those circumstances. All I can say is I am sorry...sorry for the evil energy that at times comes to haunt. You have proved to be a strong person in how you continued to "live" a full life. There is no better payback to those that harm than that!
Karma comes. Karma kicks. Have compassion for what will come their way.
Hugs, Sumana
Karma comes. Karma kicks. Have compassion for what will come their way.
Hugs, Sumana
I don't want my post (above) to make you feel that I accepted MS overnight. I searched eight years before an answer. My husband and I had decided we may never know what was wrong but would move on with acceptance for the sake of our grown sons. Even as adults they watch and pick up clues on how we handle lemons in life. I want my sons to see positive no matter what burden comes to them.
Anger? You only need to go back to my posts in July when I was disgnosed. I was nothing but anger. I screamed too!!! Why me!!! Why the woman that enjoyed gardening and art and shopping and playing...Why me? It took a month or so before it calmed and I was able to accept. At that point, I began working on just how I would handle what was given to me and with a grace.
However, the one thing I did not have was a small child. That breaks my heart for you. I hope energy comes blowing like a wild wind to you giving ideas on how you can be the parent you wish to be. I know answers are there. Maybe having friends help with transportation to play groups. Maybe host a playgroup inviting the mothers. Each mother bringing a snack to share and you supply the drinks.
Also, even though I did not have MS as a young mother, I refused being a short order cook. Often one didn't wish to share in the meal offered. I had a cutting board set next to the dishwasher. The boys would open the dishwasher, place the cutting board on the opened door, and magic! A table short enough for them to fix a cheese sandwich or peanutbutter and jelly sandwich with little work on my part. I kept sippy cups filled with their favorite drinks on the lower shelf of the refrigerator where their little hands could reach. There were also small plastic bowls with lids filled with cereal that made it easy for them to make breakfast when things were too hectic with the older boys.
Just a few suggestions. I WILL YOU to find ways. Your son needs to see you coping with this MonSter.
Anger? You only need to go back to my posts in July when I was disgnosed. I was nothing but anger. I screamed too!!! Why me!!! Why the woman that enjoyed gardening and art and shopping and playing...Why me? It took a month or so before it calmed and I was able to accept. At that point, I began working on just how I would handle what was given to me and with a grace.
However, the one thing I did not have was a small child. That breaks my heart for you. I hope energy comes blowing like a wild wind to you giving ideas on how you can be the parent you wish to be. I know answers are there. Maybe having friends help with transportation to play groups. Maybe host a playgroup inviting the mothers. Each mother bringing a snack to share and you supply the drinks.
Also, even though I did not have MS as a young mother, I refused being a short order cook. Often one didn't wish to share in the meal offered. I had a cutting board set next to the dishwasher. The boys would open the dishwasher, place the cutting board on the opened door, and magic! A table short enough for them to fix a cheese sandwich or peanutbutter and jelly sandwich with little work on my part. I kept sippy cups filled with their favorite drinks on the lower shelf of the refrigerator where their little hands could reach. There were also small plastic bowls with lids filled with cereal that made it easy for them to make breakfast when things were too hectic with the older boys.
Just a few suggestions. I WILL YOU to find ways. Your son needs to see you coping with this MonSter.
Hi naomi
I just wanted to join the others in welcoming you to the forum and also thanking you for the great post as it has led to a really helpful thread which has the basis for what I think would be interesting to have on the health pages.
I was dx'd at the end of March last year and I am guessing we are a similar age (I am 47) as you indicated something about the last 45 years. I started writing who I agreed with on this thread and then thought I can't single anyone out as everyone has added something to provoke thought and reassurance. At the end of the day we all have to work out for ourselves how to live our lives with MS and I try to be positive, but just sometimes I slip into a panic mode when I think about what is ahead. So living in the mometn and enjoying now is also the answer for me...none of us know what is ahead and each and every one of us will have a different journey for some it will be smooth and for others a rollercoaster.
I love your picture and for me there is your answer...you have a dear little boy and looks like a loving partner so just make the most of every moment, do what is required to take the stress out of your life and ask for help when needed. I have done things a little differently this year and if I need rest I take it without feeling guilty and I allow myself more treats than I used to. I am not waiting to do things in ten years time and intend to try and just enjoy life to the full.
I am glad that you have joined the forum and thank you for your honest musings.
Love Sarah x
I just wanted to join the others in welcoming you to the forum and also thanking you for the great post as it has led to a really helpful thread which has the basis for what I think would be interesting to have on the health pages.
I was dx'd at the end of March last year and I am guessing we are a similar age (I am 47) as you indicated something about the last 45 years. I started writing who I agreed with on this thread and then thought I can't single anyone out as everyone has added something to provoke thought and reassurance. At the end of the day we all have to work out for ourselves how to live our lives with MS and I try to be positive, but just sometimes I slip into a panic mode when I think about what is ahead. So living in the mometn and enjoying now is also the answer for me...none of us know what is ahead and each and every one of us will have a different journey for some it will be smooth and for others a rollercoaster.
I love your picture and for me there is your answer...you have a dear little boy and looks like a loving partner so just make the most of every moment, do what is required to take the stress out of your life and ask for help when needed. I have done things a little differently this year and if I need rest I take it without feeling guilty and I allow myself more treats than I used to. I am not waiting to do things in ten years time and intend to try and just enjoy life to the full.
I am glad that you have joined the forum and thank you for your honest musings.
Love Sarah x
Hi Naomi,
I am glad you found us! So many wonderful things have already been shared with you that I have little to add. You have a right to feel angry, confused, cheated or whatever the emotion may be. We're here for venting , sharing, caring and even a laugh or two.
One thing I didn't see mentioned yet, were the Health Pages. They contain a wealth of information on a variety of subjects. They are located at the top right hand corner of this page, next to the yellow icon.
As COBOB stated , everyone's MS is different from anybody's else. Just as there are no two snowflakes identical , there are no two MS cases identical. However, you will find that there are similarities with many cases. If you need information about a particular symptom and how it is dealt with, just post your question and invariably someone else has had some experience with it.
As so many others have said, MS is a roller coaster ride of emotions. Your diagnosis is so new, especially since you've only had symptoms since January. Your emotions and shock over a new lifestyle are still raw. Give them time to heal. We'll be here waiting on you.
Hugs,
Ren
I am glad you found us! So many wonderful things have already been shared with you that I have little to add. You have a right to feel angry, confused, cheated or whatever the emotion may be. We're here for venting , sharing, caring and even a laugh or two.
One thing I didn't see mentioned yet, were the Health Pages. They contain a wealth of information on a variety of subjects. They are located at the top right hand corner of this page, next to the yellow icon.
As COBOB stated , everyone's MS is different from anybody's else. Just as there are no two snowflakes identical , there are no two MS cases identical. However, you will find that there are similarities with many cases. If you need information about a particular symptom and how it is dealt with, just post your question and invariably someone else has had some experience with it.
As so many others have said, MS is a roller coaster ride of emotions. Your diagnosis is so new, especially since you've only had symptoms since January. Your emotions and shock over a new lifestyle are still raw. Give them time to heal. We'll be here waiting on you.
Hugs,
Ren
Naomi,
I'm so glad that you have joined us here but of course sad for you that you need to be here. You have every right to feel sad, mad and everything else for that matter. MS is a terrible disease and it has taken you off your feet!
Talking to God the way that you are is a good thing. If you are home alone I suggest saying it out loud, it might help bring the feelings out of you a bit. I talk to him that way too and it helps.
As far as the pain, it may take a while to get the right pain control. Nothing will take it a way but hopefully will get you to a place that is liveable.
I just wanted to welcome you here and tell you that I'm sorry you are hurting! Hang out with us here and you will find support and friendship.
Hugs
Red
I'm so glad that you have joined us here but of course sad for you that you need to be here. You have every right to feel sad, mad and everything else for that matter. MS is a terrible disease and it has taken you off your feet!
Talking to God the way that you are is a good thing. If you are home alone I suggest saying it out loud, it might help bring the feelings out of you a bit. I talk to him that way too and it helps.
As far as the pain, it may take a while to get the right pain control. Nothing will take it a way but hopefully will get you to a place that is liveable.
I just wanted to welcome you here and tell you that I'm sorry you are hurting! Hang out with us here and you will find support and friendship.
Hugs
Red
Naomi,
Anger is fine. Anything you feel is fine. No it is not fair. Venting is great.
Alex
Anger is fine. Anything you feel is fine. No it is not fair. Venting is great.
Alex
Well, I would like to thank you all for taking the time to answer my question. I do try to think positively and put on a happy face. And most of the time this works for me. I have so much for which I am thankful. I am thankful that I got MS at a time when they have drugs that slow it down. I am thankful that we adopted our beautiful, amazing son before I was diagnosed. I am thankful I have such a large and supportive family. Yes, I have lots of thankfulness (is that even a word???)
However, some days when I hurt so bad that the pain pills don't even help and I am so tired I cannot get off the couch to fix lunch I am sorry, I do fall into the pity pit. Jeez, I get so angry that I don't even know what to do! I have no where and no one to throw the anger at. I scream at God (in my head, of course) saying WHY!!! WHY!!! WHY!!! I had such a great life. I was healthy, okay I am overweight, but basically I was healthy. I had taken a leave of absence from a job I loved to raise my son for a couple of years. I was having such a great time being a housewife! Fixing dinner for all of us. Cleaning my house. Seriously, I loved it all. I thanked my heavenly Father for all of my blessing each and every day.
Then one day, I woke up and I was not healthy any more. I mean I did not get MS gradually. It slammed into my body like a gosh darn car wreck. Seriously, I went to bed one day feeling great! I woke up the next day with a numb leg. I did not know it then, but everything changed. I had days where I could not even do the gosh darn laundry. ARE YOU KIDDING ME!!! I would look at the stairs in my house and just weep because I did not have the energy to climb them one more time.
It is just so unfair. I know that you all probably have similar stories and some of you have worse stories. I know that I have to drag myself out of the pity pit and get on with this new life. But I hate my new life. Okay, maybe not hate, but I don't enjoy it like the old one I can tell you that. So how do I say goodbye to what I had and embrace this new life??? Please, someone tell me what the secret is. I would really like to know.
I am sorry for this long post. Guess I had a little venting to do! Really, I try to focus on all that is good in my life. And belileve me, I have many blessings that have been given to me. I guess I just wish I would have appreciated being healthy more than I did. I never realized what it meant until I did not have it any more. Gosh, to go back and relive the first 45.5 years of my life would be so great. I would do things so differently if I had known that one day I would not be able to do the things I want to do. I so wish the Lord would have told me what was in store. I would have appreciated things so much more.
So, I know I have to learn to appreciate sitting on the couch and looking out the window. I am just to angry right now. What is out my window is my son playing in our yard. He is playing alone because his mother does not have the energy to play with him any more. Guess I better get out of the pity pit and find him some friends! :-)
Sorry again. Thank you all for your responses. Some made me laugh and some made me cry. Each and every one is helpful and some day...maybe,.. I pray I will have the strength to do what you all do every day. I admire you all.
-Naomi
However, some days when I hurt so bad that the pain pills don't even help and I am so tired I cannot get off the couch to fix lunch I am sorry, I do fall into the pity pit. Jeez, I get so angry that I don't even know what to do! I have no where and no one to throw the anger at. I scream at God (in my head, of course) saying WHY!!! WHY!!! WHY!!! I had such a great life. I was healthy, okay I am overweight, but basically I was healthy. I had taken a leave of absence from a job I loved to raise my son for a couple of years. I was having such a great time being a housewife! Fixing dinner for all of us. Cleaning my house. Seriously, I loved it all. I thanked my heavenly Father for all of my blessing each and every day.
Then one day, I woke up and I was not healthy any more. I mean I did not get MS gradually. It slammed into my body like a gosh darn car wreck. Seriously, I went to bed one day feeling great! I woke up the next day with a numb leg. I did not know it then, but everything changed. I had days where I could not even do the gosh darn laundry. ARE YOU KIDDING ME!!! I would look at the stairs in my house and just weep because I did not have the energy to climb them one more time.
It is just so unfair. I know that you all probably have similar stories and some of you have worse stories. I know that I have to drag myself out of the pity pit and get on with this new life. But I hate my new life. Okay, maybe not hate, but I don't enjoy it like the old one I can tell you that. So how do I say goodbye to what I had and embrace this new life??? Please, someone tell me what the secret is. I would really like to know.
I am sorry for this long post. Guess I had a little venting to do! Really, I try to focus on all that is good in my life. And belileve me, I have many blessings that have been given to me. I guess I just wish I would have appreciated being healthy more than I did. I never realized what it meant until I did not have it any more. Gosh, to go back and relive the first 45.5 years of my life would be so great. I would do things so differently if I had known that one day I would not be able to do the things I want to do. I so wish the Lord would have told me what was in store. I would have appreciated things so much more.
So, I know I have to learn to appreciate sitting on the couch and looking out the window. I am just to angry right now. What is out my window is my son playing in our yard. He is playing alone because his mother does not have the energy to play with him any more. Guess I better get out of the pity pit and find him some friends! :-)
Sorry again. Thank you all for your responses. Some made me laugh and some made me cry. Each and every one is helpful and some day...maybe,.. I pray I will have the strength to do what you all do every day. I admire you all.
-Naomi
The one thing I would add is I try not to get caught up with comparing my disease to someone else's. MS doesn't seem to work that way. Mine has been visual and sensory and has only thrown me one "motor moment." I figure the disease does what it does...and when it wants to do it. My progression will not match someone else's. I try not to project my expectations and I also try not to act too surprised when my MS does something I wasn't planning on it doing.
MS likes surprises a lot more than I do.
MS likes surprises a lot more than I do.
Thanks Alex. You seem to achieve this with such ease. I know it isn't and you have had years of practice. I'm always impressed with your balance of living in the day, enjoying every moment that is good, crusading to change what is wrong, and refusing to allow evil to change the person you know yourself to be.
I always feel so guilty about my complaining when I encounter your success. I'll have my moment and then move along to trying again. Thanks.
Mary
I always feel so guilty about my complaining when I encounter your success. I'll have my moment and then move along to trying again. Thanks.
Mary
Living in the moment is good. I look at my Service Dog Polly she lives in the moment and has not a care in the world and she was born deaf.
Adapting is essential because things do change with this disease.
Making small life goals like for today or a few days out but not getting to upset if they have to change.
Having a sense of humor.
Getting a buddy on the forum someone you can Private Message with.
Looking at what I can do in a given day not adding up all the I can'ts or symptoms.
I have now been rolling with this since I was two 1/2 and hospitalized with a bizarre Neurological disorder which kept me from swallowing and such. I then had double vision which was permanent probably from that time the Doctors just said was from the brain stem. Then I was just expected to cope no allowances from then on for the vision.
Then a lifetime of cognitive, vertigo, and depression no one could figure out. I ended up ten years of my youth in and out of State Mental Institutions. I was put on the worst drugs in the business for psychosis. Plus my family thought if they were just tough enough on me I would be normal. I won't get into my childhood but it was as bad as it gets. Even my Doctors can't imagine a mother like mine.
I learned how to fake what the Doctors wanted to hear. Eventually got away from Psychiatrists all together.
A few years back my PCP noticed my reflexes and all were not right. I said so they have always been that way.
Two years later I was diagnosed with MS. All the Neurologists and a Psychiatrist have now looked at all the evidence and concluded I have had Primary Progressive MS my whole life and nothing more. All Psychiatric Diagnosis have been removed from my medical record.
The thing is I had a long time to either get really bitter or defeated or to get stronger from my experience.
Hell is sitting in an overcrowded underfunded State Mental Institution when you know you do not belong there. Or sitting in your own head mad at the world. Sitting in a chair I realized they could lock me up but I had full control of my mind. I could choose what I did with my thinking.
We all have our own stories. Mine is unique because I went to the breaking point and did not and my life lesson is to live the moment. To let go of extra baggage.
It is about acceptance. Unfortunately you do not accept a thing and then you are done with it you have to keep getting back to acceptance. But when you are there the rest just does not matter. That is when you have control over your own happiness.
MS takes away the control or our feeling of control. When we realize control is an illusion. The only thing we can control is our attitude.
I can't control my double vision, my cognitive difficulty, my incontinence, my pain, and my weakness. I can say oh well, I am no less a person because these things are happening to me.
I do not think less off my old dog because he has trouble walking, seeing, and poops on himself.
It is a given fact the human body will start to betray us at some point.
I get mad, I feel sorry for myself but I like the feeling less and less. I hate the burning in my chest.
I would rather laugh at something.
Alex
Adapting is essential because things do change with this disease.
Making small life goals like for today or a few days out but not getting to upset if they have to change.
Having a sense of humor.
Getting a buddy on the forum someone you can Private Message with.
Looking at what I can do in a given day not adding up all the I can'ts or symptoms.
I have now been rolling with this since I was two 1/2 and hospitalized with a bizarre Neurological disorder which kept me from swallowing and such. I then had double vision which was permanent probably from that time the Doctors just said was from the brain stem. Then I was just expected to cope no allowances from then on for the vision.
Then a lifetime of cognitive, vertigo, and depression no one could figure out. I ended up ten years of my youth in and out of State Mental Institutions. I was put on the worst drugs in the business for psychosis. Plus my family thought if they were just tough enough on me I would be normal. I won't get into my childhood but it was as bad as it gets. Even my Doctors can't imagine a mother like mine.
I learned how to fake what the Doctors wanted to hear. Eventually got away from Psychiatrists all together.
A few years back my PCP noticed my reflexes and all were not right. I said so they have always been that way.
Two years later I was diagnosed with MS. All the Neurologists and a Psychiatrist have now looked at all the evidence and concluded I have had Primary Progressive MS my whole life and nothing more. All Psychiatric Diagnosis have been removed from my medical record.
The thing is I had a long time to either get really bitter or defeated or to get stronger from my experience.
Hell is sitting in an overcrowded underfunded State Mental Institution when you know you do not belong there. Or sitting in your own head mad at the world. Sitting in a chair I realized they could lock me up but I had full control of my mind. I could choose what I did with my thinking.
We all have our own stories. Mine is unique because I went to the breaking point and did not and my life lesson is to live the moment. To let go of extra baggage.
It is about acceptance. Unfortunately you do not accept a thing and then you are done with it you have to keep getting back to acceptance. But when you are there the rest just does not matter. That is when you have control over your own happiness.
MS takes away the control or our feeling of control. When we realize control is an illusion. The only thing we can control is our attitude.
I can't control my double vision, my cognitive difficulty, my incontinence, my pain, and my weakness. I can say oh well, I am no less a person because these things are happening to me.
I do not think less off my old dog because he has trouble walking, seeing, and poops on himself.
It is a given fact the human body will start to betray us at some point.
I get mad, I feel sorry for myself but I like the feeling less and less. I hate the burning in my chest.
I would rather laugh at something.
Alex
hi and welcome- april isnt long enough- it does take time to even accept it.
sometimes i still will think whats wrong here -with me- duh!! yeh think on things to do and get done, try to move on! its tough-its not fair- but things could be alot worse! hugs!!!
tick
sometimes i still will think whats wrong here -with me- duh!! yeh think on things to do and get done, try to move on! its tough-its not fair- but things could be alot worse! hugs!!!
tick
Hi and welcome! I was dx about a year ago as well and know just how you feel.
There are some days when I accept whatever is going on with me and can be in the moment and enjoy - other days I am mad and rebel against the idea of any disease -
It's one giant rollercoaster ride, and this site has been great for me . Like Lulu said - smart compassionate people who understand and are there to lean on - I know I don't like to burden my family with all of this - I just want to be "normal" - so coming here gives me a great place to let it all out and learn as well.
So this site helps me, and being kind to myself helps as well. Patience and faith that no matter what happens - I have some pretty amazing things going on in my life. I just have to take the time to notice it!
Feel well.
Carol
There are some days when I accept whatever is going on with me and can be in the moment and enjoy - other days I am mad and rebel against the idea of any disease -
It's one giant rollercoaster ride, and this site has been great for me . Like Lulu said - smart compassionate people who understand and are there to lean on - I know I don't like to burden my family with all of this - I just want to be "normal" - so coming here gives me a great place to let it all out and learn as well.
So this site helps me, and being kind to myself helps as well. Patience and faith that no matter what happens - I have some pretty amazing things going on in my life. I just have to take the time to notice it!
Feel well.
Carol
Sumanadevii - what a great way to put the pain into perspective, by asking who you'd give it to. I will use that thought in the future. It also gave me a fun thought...that I'd like to give a few of my rough days to my first neurologist, and a few days to some of the bosses I've read about on this site that have treated some of our members as though they just were not trying hard enough. I would not give my symptoms to anyone for an entire lifetime, but it would be nice to lend them out to inspire compassion from some who can not seem to find it on their own.
Hi Naomi. I'm so glad you decided to join us here. We'll be glad to share from our experiences to help you through the rough spots. Believe it or not, you are here to help us too, no doubt New members always bring fresh perspective and can help knock extablished members out of the ruts we've settled into like nesting hens.
My first thought was also how new this Living-with-MS diagnosis is for you. I've just finished up my first year of official diagnosis. Everyone seems to agree it's the toughest time. Some days are good. Others I feel like I'm in full grieving mode.
I've had symptoms for 20 years. Getting a diagnosis closed the door on some of my hopes and escape into denial. It also opened some new doors for treatment and moving forward. Sometimes the hardest part of this is giving ourselves permission to fully feel whatever we come across in a given day. Give yourself plenty of time. We have our whole lives to figure this out.
Other than that, Lulu gave such good advice that it's hard to follow her at the moment. You might be interested in reading The Spoon Theory though if you haven't come across it yet. It's a copyrighted piece by Christine Miserandano in which she describes by analogy what it is like to live with sickness or disability (in her case it's lupus). Reading it was a powerful way for me to understand that I wasn't alone in my experiences and helped my family see what each day is like.
Christine permits links to read her story. You will find it here:
http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/
Please tell us more about yourself as you are able and feel comfortable.
Mary
My first thought was also how new this Living-with-MS diagnosis is for you. I've just finished up my first year of official diagnosis. Everyone seems to agree it's the toughest time. Some days are good. Others I feel like I'm in full grieving mode.
I've had symptoms for 20 years. Getting a diagnosis closed the door on some of my hopes and escape into denial. It also opened some new doors for treatment and moving forward. Sometimes the hardest part of this is giving ourselves permission to fully feel whatever we come across in a given day. Give yourself plenty of time. We have our whole lives to figure this out.
Other than that, Lulu gave such good advice that it's hard to follow her at the moment. You might be interested in reading The Spoon Theory though if you haven't come across it yet. It's a copyrighted piece by Christine Miserandano in which she describes by analogy what it is like to live with sickness or disability (in her case it's lupus). Reading it was a powerful way for me to understand that I wasn't alone in my experiences and helped my family see what each day is like.
Christine permits links to read her story. You will find it here:
http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/
Please tell us more about yourself as you are able and feel comfortable.
Mary
Hi Naomi and welcome. April isn't that long ago. Adjusting to the idea of living with a lifelong disease that has no known cure is a big one to get used to, if we ever do. And then if throw on top of that the roller coaster we can be on with the symptoms, it can feel like being at the bottom of a dark well.
Being here on this forum is a positive step - this is a wonderful community full of smart and compassionate folks who are more than willing to help brainstorm ideas, commisserate and give a gentle nudge or a swift kick in the rear end when appropriate. It helps to know that what you are experiencing physically and emotionally are not that unique - misery truly does love company. And we are great company.
Remember to be kind to yourself- this disease can be very cruel to our psyche.
take care and come back often. Lulu
A bit of advice we have often passed out freely to others is find things that take you outside of yourself and your own difficulties. There are many ways to reach out to others who are having an even more difficult time. This can be as simple as picking up the phone and calling someone else who is also struggling.
Being here on this forum is a positive step - this is a wonderful community full of smart and compassionate folks who are more than willing to help brainstorm ideas, commisserate and give a gentle nudge or a swift kick in the rear end when appropriate. It helps to know that what you are experiencing physically and emotionally are not that unique - misery truly does love company. And we are great company.
Remember to be kind to yourself- this disease can be very cruel to our psyche.
take care and come back often. Lulu
A bit of advice we have often passed out freely to others is find things that take you outside of yourself and your own difficulties. There are many ways to reach out to others who are having an even more difficult time. This can be as simple as picking up the phone and calling someone else who is also struggling.
I live in the present moment and enjoy it. I enjoy it even when I don't have the energy to do more than sit and look out the window. I remind myself that one day, I may not be able to sit and look out that window!!!! On days when I am getting around with my walker, I am so thankful to be able to care for my husband. One days when I am in pain, I ask myself who would I give it to? My husband? My sons? A friend? My sister? No, I will take the pain. So, for me, it is just staying right here in the now...that present moment and enjoy each breath.
Now there are days when I wish...It isn't like I am always able to stay in the present but it is a goal for me. I work on it.......
Now there are days when I wish...It isn't like I am always able to stay in the present but it is a goal for me. I work on it.......
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