Aa
Lonely :(
Feeling very depressed today, and have been this way for quite some time now. I realise that this is the MS, but do any of you ever get days, when your on your own, your sx are playing havoc with you, and no matter how helpful our better halfs try to be, you just feel so alone with this disease?
You do your best to put a brave face, being the good Wife and Mother, trying so hard, to keep it altogether, but I was wondering if anybody else felt this same way from time to time?
I have fought MS now for over 9 years (probably longer now I look back), and now I feel so tired of fighting with Neuros – Tysabri, and trying to get back on track. But this relapse has gone on for so long now, it’s finally wearing me down.
Don’t get me wrong I have made some VERY good friends here on the Forum like Sisters, and they have helped me so much, but sometimes it just feels like to much of a cross to bear.
I don’t mean to be the voice of doom and gloom – I’m sorry – I will try harder to be more positive, but it’s hard – and be more responsive on the Forum like I was before.
I feel like I am falling to pieces.
Maybe I’m not that strong after all:(
Hugs and love to all,
Debs xxxx
You do your best to put a brave face, being the good Wife and Mother, trying so hard, to keep it altogether, but I was wondering if anybody else felt this same way from time to time?
I have fought MS now for over 9 years (probably longer now I look back), and now I feel so tired of fighting with Neuros – Tysabri, and trying to get back on track. But this relapse has gone on for so long now, it’s finally wearing me down.
Don’t get me wrong I have made some VERY good friends here on the Forum like Sisters, and they have helped me so much, but sometimes it just feels like to much of a cross to bear.
I don’t mean to be the voice of doom and gloom – I’m sorry – I will try harder to be more positive, but it’s hard – and be more responsive on the Forum like I was before.
I feel like I am falling to pieces.
Maybe I’m not that strong after all:(
Hugs and love to all,
Debs xxxx
Debs,
I truly understand how you feel. I am also having a really tough time of it and am very lonely and isolated. It is depressing and those SSRI's make me crazy too. I have extreme chronic pain and sometimes I just cannot seem to face the day. Especially when I wake up hurting.
It helps me to let go and cry. I never used to cry at all, just swallow what made me sad or upset and move on, and be strong for my family. Now it really helps to feel the emotions and let them out. It helps take the pain away for me.
Getting outside a bit each day and just sitting or walking (when I can walk) in the quiet of dawn or dusk and listening to the birds sing helps me remember its all part of life and just to let go and embrace it.
People who do not have MS cannot grasp what we are going through. I get that you look fantastic thing all the time. I wish I could switch bodies with them for a day or so and then tell them they look fantastic. Enough rambling.
Hang in there. Each day is different. Some are better than others, as you know. Thank goodness for this forum and that we can share our common experiences. You are strong!
Jessica
I truly understand how you feel. I am also having a really tough time of it and am very lonely and isolated. It is depressing and those SSRI's make me crazy too. I have extreme chronic pain and sometimes I just cannot seem to face the day. Especially when I wake up hurting.
It helps me to let go and cry. I never used to cry at all, just swallow what made me sad or upset and move on, and be strong for my family. Now it really helps to feel the emotions and let them out. It helps take the pain away for me.
Getting outside a bit each day and just sitting or walking (when I can walk) in the quiet of dawn or dusk and listening to the birds sing helps me remember its all part of life and just to let go and embrace it.
People who do not have MS cannot grasp what we are going through. I get that you look fantastic thing all the time. I wish I could switch bodies with them for a day or so and then tell them they look fantastic. Enough rambling.
Hang in there. Each day is different. Some are better than others, as you know. Thank goodness for this forum and that we can share our common experiences. You are strong!
Jessica
I had just gotten off the phone with my MS nurse when I read your post last night. What a coincidence that we had quite a long discussion about depression and MS. It was quite an eye opener for me as I knew what I was experiencing and yet not wanting to awknowledge it.
I wish you could take anti-depressants as they could help many things along with depression. Personally, I have avoided them because I thought I was doing fine and didn't need them. But, my mind is changing and now I'll give them a try.
Going to see the counselor like you mentioned is a really good idea. It will be therapeutic, but also having someone to talk to who isn't going to judge you or tell you what to do and not to do is very helpful. I hope an pray that he/she will get you back on the path so you can get your quality of life back. Please let us know how that goes. I would be interested to try this myself as well.
Love and hugs,
Julie
I wish you could take anti-depressants as they could help many things along with depression. Personally, I have avoided them because I thought I was doing fine and didn't need them. But, my mind is changing and now I'll give them a try.
Going to see the counselor like you mentioned is a really good idea. It will be therapeutic, but also having someone to talk to who isn't going to judge you or tell you what to do and not to do is very helpful. I hope an pray that he/she will get you back on the path so you can get your quality of life back. Please let us know how that goes. I would be interested to try this myself as well.
Love and hugs,
Julie
Hi there, sorry to hear you are going through this... know that we understand and are here for you. I myself as well as many here have been in exactly the same place as you are.
I know it's not easy and you do feel all alone when these feelings happen. But it will pass... at the time it doesn't feel like it.. it feels like it's been that way FOREVER... it will pass. As they say,,,, look for the light at the end of the tunnel. Honey.. take care of yourself and try not to be so hard on yourself. It's not an easy Dx to live with. It's a battle daily with symptoms and it does change your live as well as your family.
Please hang in there and know your not alone.. you might feel that way..but hang in there..I'm glad your seeing a therapist.. I should when I feel that way... but I haven't looked into it yet.. but do think about it quite often.
stay strong dear
wobbly
I know it's not easy and you do feel all alone when these feelings happen. But it will pass... at the time it doesn't feel like it.. it feels like it's been that way FOREVER... it will pass. As they say,,,, look for the light at the end of the tunnel. Honey.. take care of yourself and try not to be so hard on yourself. It's not an easy Dx to live with. It's a battle daily with symptoms and it does change your live as well as your family.
Please hang in there and know your not alone.. you might feel that way..but hang in there..I'm glad your seeing a therapist.. I should when I feel that way... but I haven't looked into it yet.. but do think about it quite often.
stay strong dear
wobbly
Wow! Way to be so stong at such a young age. Many of us "old folks" barely have that kind of strength! Please keep your positivity and pass it on. The world needs more people like you!
Debs. Although am still new to this forum, but you were always there for me to ask all my question and help ease my worries, depresses mind.
I think it's time for me to step up and tell you my story and try to help and tell you what i honestly think about this.
let me tell you this, you're so lucky you have a husband and a great family, trust me that has a great impact on someone with MS. having a family would mean you can talk to someone, open up to your husband or feel happy with one of your children. I am not married, and i barely talk to my parents about my MS, because they never get how i feel, so you can imagine how lonely i feel, and how depresses i feel ALL the time because of MS. i was dx'd when i was 13, imagine how would a kid react when he's told "darling, you'll live with this the rest of your life, and you have to take 3 injections a week, and you'll feel sad all the time but am sure you can manage to get used to it..."
Debs, i thought of commiting suicide twice, but i never tried, and thats all because of the depression that i suffer from because of MS. I didn't try it and stopped thinking about it because everyday something good happens to me, even when i have a relapse, i would still get that smile that makes me move on and challenge MS.
I got the first relapse when i was 13, and it was the worst, all my limbs were "out of reach" i couldn't move anything. but the years passed, am now 17, and i turned to be the best defender in football in the history of my school football team! so i thought about it, when i am fine, i could live the best life ever and i could be the happiest person in this planet. and i actually did, i got a full scholarship because of my academic exellence to Australia (i got a relapse in the exams period but i carried on) and i can't be happier with myself. although i am having the longest relapse in my life now, 7 months, but what makes me feel okay is that am sure that one day it will be gone, sooner or later i'll be able to play football again and be healthy again.
Sorry alot been said there, hang on there, we're all here for you, be thankful that you have a great family, and your second family here in this forum.
Take Care, and be sure that you can make your day, we have to face this, all of us.
:)
MK
I think it's time for me to step up and tell you my story and try to help and tell you what i honestly think about this.
let me tell you this, you're so lucky you have a husband and a great family, trust me that has a great impact on someone with MS. having a family would mean you can talk to someone, open up to your husband or feel happy with one of your children. I am not married, and i barely talk to my parents about my MS, because they never get how i feel, so you can imagine how lonely i feel, and how depresses i feel ALL the time because of MS. i was dx'd when i was 13, imagine how would a kid react when he's told "darling, you'll live with this the rest of your life, and you have to take 3 injections a week, and you'll feel sad all the time but am sure you can manage to get used to it..."
Debs, i thought of commiting suicide twice, but i never tried, and thats all because of the depression that i suffer from because of MS. I didn't try it and stopped thinking about it because everyday something good happens to me, even when i have a relapse, i would still get that smile that makes me move on and challenge MS.
I got the first relapse when i was 13, and it was the worst, all my limbs were "out of reach" i couldn't move anything. but the years passed, am now 17, and i turned to be the best defender in football in the history of my school football team! so i thought about it, when i am fine, i could live the best life ever and i could be the happiest person in this planet. and i actually did, i got a full scholarship because of my academic exellence to Australia (i got a relapse in the exams period but i carried on) and i can't be happier with myself. although i am having the longest relapse in my life now, 7 months, but what makes me feel okay is that am sure that one day it will be gone, sooner or later i'll be able to play football again and be healthy again.
Sorry alot been said there, hang on there, we're all here for you, be thankful that you have a great family, and your second family here in this forum.
Take Care, and be sure that you can make your day, we have to face this, all of us.
:)
MK
I can so much identify with how you are feeling. Having MS can cause anyone (even those without a diagnosis, but fighting all the symptoms day in and day out) to become depressed. Many times, I feel that I contribute so little, because of many limitations. My overwhelming fatigue interferes with so much and some of that I attribute directly to MS and some of it I attribute to just having MS and dealing with it, day in and day out.
Now that winter is almost upon us, here in Virginia, it's always a time of slow down. I like to be outside, among birds singing, the sites and smells and warm, gentle breezes. Winter, in my opinion, is a time of rest. And that's exactly what I do, now that I do not have little ones to run after anymore. I slow down.
I find laying in bed or laying on a couch, very healing to my body and I actually suffer from less pain in my legs. It's comfortable. I just wish the other people in my life, understood that this is what makes me feel better, during these darker and shorter days of Fall and Winter.
I do take an antidepressant and feel that I must. I wish you could take an antidepressant also. They really do help. At least it keeps me from being disconnected with life. The fact that you are going to a therapist is good news. I know that it will help.
I wanted to respond to your post for two reasons...I DO understand the way you are presently feeling and for the simple fact that you are my very dear friend and I love you. You are not along Debs. Sometimes we all need to hear that, because we do "feel alone." How could anyone else possibily understand how tired I am, or understand that I am NOT in the mood to contribute much? It's okay to feel this way Debs, except when it keeps you from interacting with people at all or prevents you from leaving the house at all. If you feel like that, you need professional help. I'm glad that you already know that.
I love you Debs and we are all here for you honey. Through thick and think, through the good as well as the bad. We are all family here. My Lord, I know that I am blessed, for having my cyber family here. I trust them with my life. They truly ARE my brother's and sisters and understand me, better than my flesh and blood family do. God love you all.
Big Hugs, my precious Debs. All my love, dear cyber sister of mine....
Heather
Earth Mother
Now that winter is almost upon us, here in Virginia, it's always a time of slow down. I like to be outside, among birds singing, the sites and smells and warm, gentle breezes. Winter, in my opinion, is a time of rest. And that's exactly what I do, now that I do not have little ones to run after anymore. I slow down.
I find laying in bed or laying on a couch, very healing to my body and I actually suffer from less pain in my legs. It's comfortable. I just wish the other people in my life, understood that this is what makes me feel better, during these darker and shorter days of Fall and Winter.
I do take an antidepressant and feel that I must. I wish you could take an antidepressant also. They really do help. At least it keeps me from being disconnected with life. The fact that you are going to a therapist is good news. I know that it will help.
I wanted to respond to your post for two reasons...I DO understand the way you are presently feeling and for the simple fact that you are my very dear friend and I love you. You are not along Debs. Sometimes we all need to hear that, because we do "feel alone." How could anyone else possibily understand how tired I am, or understand that I am NOT in the mood to contribute much? It's okay to feel this way Debs, except when it keeps you from interacting with people at all or prevents you from leaving the house at all. If you feel like that, you need professional help. I'm glad that you already know that.
I love you Debs and we are all here for you honey. Through thick and think, through the good as well as the bad. We are all family here. My Lord, I know that I am blessed, for having my cyber family here. I trust them with my life. They truly ARE my brother's and sisters and understand me, better than my flesh and blood family do. God love you all.
Big Hugs, my precious Debs. All my love, dear cyber sister of mine....
Heather
Earth Mother
I'm so sorry. I've been in your place so many times and I don't even have MS. I was actually suicidal over it a few months ago.
I agree that this forum is a life line. Even for those without MS - those of us in limbo or that have been diagosed with something with similar symptoms. It's especially hard with a family. But know that they love you whether the house is spotless, the laundry is done or dinner is on the table. It's the simple things they remember anyway! Not the rest.
You've been a great help for all of us here - we appreciate and love you.
Take some time for yourself. Go for a walk. Go out for coffee. See a funny movie.
We love you and hope you feel better by morning! But if not, we are here for you!
Heather
I agree that this forum is a life line. Even for those without MS - those of us in limbo or that have been diagosed with something with similar symptoms. It's especially hard with a family. But know that they love you whether the house is spotless, the laundry is done or dinner is on the table. It's the simple things they remember anyway! Not the rest.
You've been a great help for all of us here - we appreciate and love you.
Take some time for yourself. Go for a walk. Go out for coffee. See a funny movie.
We love you and hope you feel better by morning! But if not, we are here for you!
Heather
Thank you all so much for your replies.
I don't take anti-depressants as they make me crazy:(
I have an appointment with a therapist in the next few days, so maybe I will feel better.
You, my friends, are the only people I can really open up to. To tell my Husband how I feel is not a good idea.
I feel useless. In bed nearly all day. Whats the point of having A LIFE LIKE THIS!!
This forum is my lifeline.
I thank you all so much for being here for me, without you, I would be nothing!!
Debs xxxxxxxx
I don't take anti-depressants as they make me crazy:(
I have an appointment with a therapist in the next few days, so maybe I will feel better.
You, my friends, are the only people I can really open up to. To tell my Husband how I feel is not a good idea.
I feel useless. In bed nearly all day. Whats the point of having A LIFE LIKE THIS!!
This forum is my lifeline.
I thank you all so much for being here for me, without you, I would be nothing!!
Debs xxxxxxxx
You are allowed to have 'down' days of course, but please never forget that you ARE strong and you WILL get through this! There are people that feel exactly the same way sometimes - you are NOT alone.
Debs,
Depression is a real part of the disease. It is like a pain and filter I see the world through when it affects me. It makes everyone feel isolated. People say what are you depressed about. I do not get that question. For me the depression comes first.
In my experience fighting it takes more energy. It is like body surfing. A big wave drags you under. If you try to come up right a way you get knocked down by the next one and take in water to your lungs. If you stay down and feel the rhythm you know when to come up between waves.
I name it out loud and some of its power goes away. When I am depressed I feel like I am in a deep hole and I will never get out of.I always get out.
Counseling has been so important since my diagnosis. That is my time. Even when I could not afford it I figured out how.
You are going through so much. I can't imagine. Think about Lance during the Tour and keep the faith!
Alex
Depression is a real part of the disease. It is like a pain and filter I see the world through when it affects me. It makes everyone feel isolated. People say what are you depressed about. I do not get that question. For me the depression comes first.
In my experience fighting it takes more energy. It is like body surfing. A big wave drags you under. If you try to come up right a way you get knocked down by the next one and take in water to your lungs. If you stay down and feel the rhythm you know when to come up between waves.
I name it out loud and some of its power goes away. When I am depressed I feel like I am in a deep hole and I will never get out of.I always get out.
Counseling has been so important since my diagnosis. That is my time. Even when I could not afford it I figured out how.
You are going through so much. I can't imagine. Think about Lance during the Tour and keep the faith!
Alex
I am so sorry you are feeling this way and we all know how that feels I think..I have been there and just short of wanting to just die, you know.
But once I called everyone and my DR got back to me and one of the things she did was to double my cymbalta and it took me out of that black hole of depression, almost right away. So antidepressants are so important..don't know if you are on them or not.
and i have to tell you how good cymbalta, its the absolutely the BEST ...
hope all everyone is saying helps you, i know it takes its time. Stay positive ...and if you believe in prayer..do it now. I will also keep you in my prayers, The power of prayer is enormous..
be good to yourself,
meg
But once I called everyone and my DR got back to me and one of the things she did was to double my cymbalta and it took me out of that black hole of depression, almost right away. So antidepressants are so important..don't know if you are on them or not.
and i have to tell you how good cymbalta, its the absolutely the BEST ...
hope all everyone is saying helps you, i know it takes its time. Stay positive ...and if you believe in prayer..do it now. I will also keep you in my prayers, The power of prayer is enormous..
be good to yourself,
meg
You are not alone in feeling that no one "gets it" when it comes to your symptoms and awful you really feel despite the front you put on. My hubby does his best to help but some days it just doesn't matter how hard he tries, it's not enough because its not his body going through the symptoms and its not his body suffering dispite the outward appearance I may have.
Right now , I think, you are facing such a tough decision and that makes this feeling of being alone with disease even more prominent. You need to stop being so hard on yourself. We are all allowed to have our bad days(weeks).
Don't feel guilty for "not trying hard enough". You just have to do what you can at any given moment and hold on to hope. Hope is what is gets me through the tough times. Use hope as your support when you feel lonely...hope that tomorrow will bring brighter days.
You ARE a strong person. You CAN get through this and everyone here on the forum is here to root you on and give you all the support we can.
Sending huge hugs and warm thoughts your way,
Ren
Right now , I think, you are facing such a tough decision and that makes this feeling of being alone with disease even more prominent. You need to stop being so hard on yourself. We are all allowed to have our bad days(weeks).
Don't feel guilty for "not trying hard enough". You just have to do what you can at any given moment and hold on to hope. Hope is what is gets me through the tough times. Use hope as your support when you feel lonely...hope that tomorrow will bring brighter days.
You ARE a strong person. You CAN get through this and everyone here on the forum is here to root you on and give you all the support we can.
Sending huge hugs and warm thoughts your way,
Ren
Oh Debs,
I'm so sorry you feel so low at the moment. Its ok to feel that way sometimes. Its totally understandable. I am going through a real low too. Have been all year. Be good to yourself. Give yourself a break. We can't always be the loving wife and mother. Its hard enough without a chronic illness so PLEASE ....if you need to , give yourself permission to just have a good cry, get it all out . You will feel better afterward.
You will be able to pick yourself up and carry on. Treat yourself today to something nice.
I am not dx yet but I know what you mean about feeling all alone. I have a loving caring husband , but there are times I feel on my own with this. I hate telling him about how im feeling with the symptoms. It just brings him down so I try to suck it up.
Some days It gets to much , thats when I have a good cry, and he just holds me and rubs my back. And I get comfort from this.
Sending my love and warm hugs to you.
Mistylee
I'm so sorry you feel so low at the moment. Its ok to feel that way sometimes. Its totally understandable. I am going through a real low too. Have been all year. Be good to yourself. Give yourself a break. We can't always be the loving wife and mother. Its hard enough without a chronic illness so PLEASE ....if you need to , give yourself permission to just have a good cry, get it all out . You will feel better afterward.
You will be able to pick yourself up and carry on. Treat yourself today to something nice.
I am not dx yet but I know what you mean about feeling all alone. I have a loving caring husband , but there are times I feel on my own with this. I hate telling him about how im feeling with the symptoms. It just brings him down so I try to suck it up.
Some days It gets to much , thats when I have a good cry, and he just holds me and rubs my back. And I get comfort from this.
Sending my love and warm hugs to you.
Mistylee
I'm so sorry you are feeling this way. First I have to ask if you are on anti-depressants. You know that depression can be caused physically by ms. I'm sure info is on health pages, don't know where. I understand fully your feelings of isolation, pain, and fatigue. When my husband was alive, I had to do things on the ranch. Haul hay, feed cows, tractor work, etc. When he was ill & dying, I cared for him at home by myself. Since his death I am very alone and isloated, and my health has deteriorated significantly. I still work but am only around people maybe 30minutes a day.
It is hard to plan things when you don't know if you will be able to do them when the day arrives. Have you talked this over with your husband? I know councilling can help if that is an option for you. Just remember you are NOT alone. You are fortunate to have loved ones around you. Lean on them, and lean on those here in this forum.
I give you my circumstances not for sympathy, just so you understand that this is common to all. Those with MS and those with mimics (me).
((((((((((hugs))))))))))), love & prayers
Maggie
It is hard to plan things when you don't know if you will be able to do them when the day arrives. Have you talked this over with your husband? I know councilling can help if that is an option for you. Just remember you are NOT alone. You are fortunate to have loved ones around you. Lean on them, and lean on those here in this forum.
I give you my circumstances not for sympathy, just so you understand that this is common to all. Those with MS and those with mimics (me).
((((((((((hugs))))))))))), love & prayers
Maggie
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