Aa
Talking about our emotions...
I thought it might be interesting to talk about our emotions and not our symptoms. There is such a huge emotional component involved when we are dealing with "Limbo-Land" or dealing with the diagnosis of MS. Hopefully after you post you will feel that your load is somewhat lighter for having shared your emotions with others. It may actually bring all of us even close together. But talking about what we are feeling and how we cope, can be a huge benefit to our overall well-being.
We are always listing our symptoms and sometimes we talk about our emotions, but we never concentrate totally on just the emotional aspect of what we endure.
Would you be so kind as to share the emotions you deal with and how it affects your daily lives? Would you share wtih us what you feel your caregivers must go through, when they stand by our side with us, through this whole ordeal? Or do you think your loved ones have abandoned you? How has it affected your relationship with your loved ones? (For example, has it brought you closer together, do you find that you argue over little things when you aren't feeling well, do you think that your family tries to unload too many responsibilities onto you; when you just don't have the energy to even clean the kitchen or take out the trash?
I personally suffer from periods of doubt in my abilities to contribute to those around me. I do wonder what 'tomorrow''s' challanges will bring and if I will be able to meet them head on. I find that some days I am depressed about what MS has taken away from me, then realize how much it has actually given to me. It's given me a different look at the world and those around me. I appreciate the little things more than ever before. I don't seem to "sweat the small stuff anymore."
Having MS has given me a totally different outlook on life. I don't take one day for granted and try to accomplish everything that my body will allow. I try to live life to the fullest, never knowing what tomorrow may bring. It has brought me closer to my loved ones because I see the sacrifices they make for my disabilities. I also have anger for my loved ones at times, when they expect too much of me on one of my bad days. Sometimes they do not understand that all I want to do is just lay down and rest my painful body.
The greatest gift that MS has given to me, are all of those that post on this forum. Without the friends I have made here, I really don't know how many days I would be able to greet with a smile. As much as MS has taken away, I also find how much it has actually given back to me.
I would appreciate your personal thoughts. Again, not the symptoms of your disease or possible disease, but the emotions you endure, day in and day out; with or without a diagnosis.
I really feel that by sharing the emotional aspect of our daily lives, that we indeed can give some insight to others; how to endure and carry on despite the trials.
All my love to all of you. My "Angels with Invisible Wings."
Heather
We are always listing our symptoms and sometimes we talk about our emotions, but we never concentrate totally on just the emotional aspect of what we endure.
Would you be so kind as to share the emotions you deal with and how it affects your daily lives? Would you share wtih us what you feel your caregivers must go through, when they stand by our side with us, through this whole ordeal? Or do you think your loved ones have abandoned you? How has it affected your relationship with your loved ones? (For example, has it brought you closer together, do you find that you argue over little things when you aren't feeling well, do you think that your family tries to unload too many responsibilities onto you; when you just don't have the energy to even clean the kitchen or take out the trash?
I personally suffer from periods of doubt in my abilities to contribute to those around me. I do wonder what 'tomorrow''s' challanges will bring and if I will be able to meet them head on. I find that some days I am depressed about what MS has taken away from me, then realize how much it has actually given to me. It's given me a different look at the world and those around me. I appreciate the little things more than ever before. I don't seem to "sweat the small stuff anymore."
Having MS has given me a totally different outlook on life. I don't take one day for granted and try to accomplish everything that my body will allow. I try to live life to the fullest, never knowing what tomorrow may bring. It has brought me closer to my loved ones because I see the sacrifices they make for my disabilities. I also have anger for my loved ones at times, when they expect too much of me on one of my bad days. Sometimes they do not understand that all I want to do is just lay down and rest my painful body.
The greatest gift that MS has given to me, are all of those that post on this forum. Without the friends I have made here, I really don't know how many days I would be able to greet with a smile. As much as MS has taken away, I also find how much it has actually given back to me.
I would appreciate your personal thoughts. Again, not the symptoms of your disease or possible disease, but the emotions you endure, day in and day out; with or without a diagnosis.
I really feel that by sharing the emotional aspect of our daily lives, that we indeed can give some insight to others; how to endure and carry on despite the trials.
All my love to all of you. My "Angels with Invisible Wings."
Heather
Hi Bitty-Bee!
You happened upon an old, but useful post about emotions. I'm so glad it touched your heart, and this is how you found us!
I'm not sure if you have been able to find your way around the forum yet. But, if you have, what you can do, is copy what you posted here, and then using the "post a question" button, paste it on a new question, intro yourself a bit, and that way, we can welcome you properly! Thanks for joining us, and hope you see this post :)
-Shell
You happened upon an old, but useful post about emotions. I'm so glad it touched your heart, and this is how you found us!
I'm not sure if you have been able to find your way around the forum yet. But, if you have, what you can do, is copy what you posted here, and then using the "post a question" button, paste it on a new question, intro yourself a bit, and that way, we can welcome you properly! Thanks for joining us, and hope you see this post :)
-Shell
I'm not sure how this works. This is the first time I've seen this website, and I'm not sureif anyone will read this. Thank you all so much for sharing all that you have shared! I was diagnosed with MS a year and a half ago and have felt so alone in this journey. Thankfully I do have family that supports me, but my mother is the only on who seems to understand how difficult it can be. Even more so since she was diagnosed with breast cancer last year. Thankfully she will be alright since she is my rock. It also makes me want to share less with her since she doesn't need the stress.
These last couple of month have been very hard emotionally and I feel like I've lost complete control over my emotions and that mt doctors don't understand. I've sat hear and read your post for the last hour with my tissues crying my eyes out. So sorry for the grammar mistakes, spelling errors and such it's partly from not being able to see through the tears, the optic neuritis, and I'm just to tired to care about the mistakes. I just want to say thank you all so much for being as honest and open as you guys have been. For the first time since my diagnosis I feel that there really are people out there that understand.
These last couple of month have been very hard emotionally and I feel like I've lost complete control over my emotions and that mt doctors don't understand. I've sat hear and read your post for the last hour with my tissues crying my eyes out. So sorry for the grammar mistakes, spelling errors and such it's partly from not being able to see through the tears, the optic neuritis, and I'm just to tired to care about the mistakes. I just want to say thank you all so much for being as honest and open as you guys have been. For the first time since my diagnosis I feel that there really are people out there that understand.
Thank you Lulu - Andi (daughter) and I have been very open about my feelings and she does understand finally. She is a very different person - can't express herself very well. I will be helping with flowers and other ideas - it has all just been such a blow - she's made some big decisions very quickly and I certainly know she has to live her life - I did.
I think there has just been too much pain for me in too short a time period and I've become emotionally overwhelmed. I have spoken with the pastor in charge of family ministries and he isn't very helpful. He feels my problems are too overwhelming to even post on the prayer chain!!! (hard to believe - but he really did say that). Although I realize I have more problems than most - I do think I should have a right to tell others about them. But there you go - even pastors are goofy sometimes.
I appreciate your thoughts and I am trying to think of everything possible to get a grip and live my life with dignity and grace. Maybe I was just headed for a "break-down" and needed to let it "blow". I haven't cried so much for so many days in a long time. I'll either sink or swim, and I pray that I swim.
Blessings.
I think there has just been too much pain for me in too short a time period and I've become emotionally overwhelmed. I have spoken with the pastor in charge of family ministries and he isn't very helpful. He feels my problems are too overwhelming to even post on the prayer chain!!! (hard to believe - but he really did say that). Although I realize I have more problems than most - I do think I should have a right to tell others about them. But there you go - even pastors are goofy sometimes.
I appreciate your thoughts and I am trying to think of everything possible to get a grip and live my life with dignity and grace. Maybe I was just headed for a "break-down" and needed to let it "blow". I haven't cried so much for so many days in a long time. I'll either sink or swim, and I pray that I swim.
Blessings.
Jan, it sure has been a while since we have seen you here and I'm so sorry to read about your continual slow decline. Your situation makes me sad and worried for you. Although the people of your church have moved on and don't look at helping with your needs as a way to demonstrate their faith have you talked to your minister? They are trained in counseling for so many different situations and should be a source of strength for you. Please call your church office and make your needs known and request a home visit, and make it soon.
It sounds like your children have continued on the path they have been on since we first met here and distancing themselves from all the pain might be a natural reaction. Is there any way if the pastor comes to visit that you can get your daughter and/or son to also be present. There might be the opportunity for a bit of family counseling as well.
Have you spoken directly to your daughter about the disappointment in not being included in the dress shopping? She may have felt she saved you an expenditure of energy and was doing you a favor by doing it on your own.
You may not physically be able to go out and do all the running and shopping that wedding planning involves, but perhaps you can do some idea shopping on line. Are you familiar with pinterest? It is a great site and you could start a pinterest board of images that excite you and feel are something your daughter would also like. I could see categories such as table favors, flowers and invitations where you could post pics of ideas for her to consider. Just a thought
I'm glad to see you pop up and hope that it gets easier for you - hugs, L
It sounds like your children have continued on the path they have been on since we first met here and distancing themselves from all the pain might be a natural reaction. Is there any way if the pastor comes to visit that you can get your daughter and/or son to also be present. There might be the opportunity for a bit of family counseling as well.
Have you spoken directly to your daughter about the disappointment in not being included in the dress shopping? She may have felt she saved you an expenditure of energy and was doing you a favor by doing it on your own.
You may not physically be able to go out and do all the running and shopping that wedding planning involves, but perhaps you can do some idea shopping on line. Are you familiar with pinterest? It is a great site and you could start a pinterest board of images that excite you and feel are something your daughter would also like. I could see categories such as table favors, flowers and invitations where you could post pics of ideas for her to consider. Just a thought
I'm glad to see you pop up and hope that it gets easier for you - hugs, L
Hi - I have missed all those I've known and hello to those who are newer to the family. I couldn't believe I saw the e-mail about this thread today. Emotions are what I am all about lately - and especially right now.
I have struggled for so many years with so many disease diagnoses and so many physical declines that I have gone through the classic steps of loss. I first just kept going - trying to be the same person I thought I was and who I thought everyone else thought I was. Strong, independent, and there for everyone and everything. I refused to admit or accept that I could no longer do things - and I refused to ask for help (denial). This, unfortunately started me down a long interesting emotional journey (with plenty of pain along the way)
Once I accepted how disabled I was, newer diagnoses kept piling on. People couldn't understand or accept just how ill I had become. I tried to appear as "up" as possible in public - mostly in church and church activities. But I began to fail, and I lost friends, who must not have been true friends if they couldn't accept the new me. I was only different physically - I was only different in that I wasn't there at the drop of a hat anymore. I could no longer do everything for everyone anymore. I missed meetings with friends, and deadlines for projects. I'd be in the hospital, unable to let them know (I live alone since my divorce). Losing friends and then activities kept isolating me more and more. I grew more and more depressed and began to feel anger, fear - shame even. I would try to blame myself for my illness. I do not have support from anyone anymore and so I feel very alone.
My children are adults now - 21 and 23. We've always been so so close. They both live with me now - the 23 year old is my daughter, who graduated college a year ago. My son has problems emotionally from my abusive husband - his father, so doesn't work or go to school. Yet he doesn't do as much as he could for me. If he could - he would be out building his own life. So I feel guilty for the marriage - the parenting they didn't have from their father, and the illness robbing them of the mother they used to have. The shame and guilt for that are mounting to the point that I am feeling desperate. My daughter is getting married next April and we are for the first time having problems. Last night was so emotionally devastating that I felt suicidal. Of course I feel ridiculous for that, but it's how I feel.
Having my children's love and healthy relationship is one thing I've always had. They know how ill I am, and fear my death, yet love me and accept me and give me so much joy. To have them no longer close would be so hard to take. My daughter doesn't talk much - even though an academic genius - so I don't know how she's feeling about things. We have talked about how fun it would be to plan her wedding (before she actually became engaged) because I was a designer, floral arranger, builder, artist, seamstress, etc. - all the things that make a great wedding planner. She's felt so lucky. Then last night she went out and selected and purchased her gown without me and it was a sad, difficult time.
I am ANGRY that I am not able to do everything anymore. I am SAD that my children are distancing themselves from me. I am DEVASTATED that the church I have given my life and energy to is not there for me. God is there - but, of course, WE are not perfect people, and so it is very hard to keep loving someone who never gets better and who never can give back. I am convinced that self-pity has set in big time. The self-pity brings more shame, and the shame, more guilt. Then more depression and then anger and sadness. I'm caught in a vicious loop. I feel half way decent one day and I think I can turn things around, but then pain and severe illness and immobility take it away again.
Also medications mess with the emotions. I always remind myself that I have too many chemicals mixed up in my system - plus my organs are all effected now - diabetes and the entire endocrine system is being attacked by my autoimmune dysfunction. MS is just one of my many diseases. I am just desperate. I have been crying for 2 days and can't seem to stop.
A few weeks ago my mother (84) fell and broke her maxilla (upper jaw area) and I have been her caretaker. She then had cataract surgery and will be having her second next week. I don't know what I am going to do - I am feeling so weak and in so much pain.
Y'all - I FEEL DESPERATE and panicked. I thank anyone who read this entire mess of a post. I've never felt so alone in my life, and to feel that someone - anyone - but especially those who can relate - has read these feelings - is a blessing.
I too have felt thankful - but it has been for the fact that I had to come to realize that I am needy. I need God - I cannot handle life on my own. I have been broken, and I feel that's what needed to happen. I look forward to seeing the Lord and feel that I first need to accept life as I have it here. All of the negative feelings I have now tell me that I need help to sort them out. I need to climb out of my deep hole in order to be able to die content with what I have been given - with the burdens that I have been given to endure.
2 Corinthians 4:7- says "But we have this treasure in earthen vessels that the surpassing greatness of the power will be of God and not from ourselves; we are afflicted in every way, but not crushed; perplexed, but not despairing; persecuted, but not forsaken; struck down, but not destroyed; always carrying about in the body the dying of Jesus, so that the life of Jesus also may be manifested in our body. For we who live are constantly being delivered over to death for Jesus' sake, so that the life of Jesus also may be manifested in our mortal flesh. So death works in us, but life in you." and James 1:2 "Consider it all joy, my brethren, when you encounter various trials, knowing that the testing of your faith produces endurance."
So - I can only pray that I have the faith and wisdom to endure the emotional storm that I am facing. I know I need to get help for the intense emotional pain that is layered upon the physical. Pain plus emotional distress, plus financial and social support depleted = problems too difficult to bear.
Blessings to all of you, Jan
I have struggled for so many years with so many disease diagnoses and so many physical declines that I have gone through the classic steps of loss. I first just kept going - trying to be the same person I thought I was and who I thought everyone else thought I was. Strong, independent, and there for everyone and everything. I refused to admit or accept that I could no longer do things - and I refused to ask for help (denial). This, unfortunately started me down a long interesting emotional journey (with plenty of pain along the way)
Once I accepted how disabled I was, newer diagnoses kept piling on. People couldn't understand or accept just how ill I had become. I tried to appear as "up" as possible in public - mostly in church and church activities. But I began to fail, and I lost friends, who must not have been true friends if they couldn't accept the new me. I was only different physically - I was only different in that I wasn't there at the drop of a hat anymore. I could no longer do everything for everyone anymore. I missed meetings with friends, and deadlines for projects. I'd be in the hospital, unable to let them know (I live alone since my divorce). Losing friends and then activities kept isolating me more and more. I grew more and more depressed and began to feel anger, fear - shame even. I would try to blame myself for my illness. I do not have support from anyone anymore and so I feel very alone.
My children are adults now - 21 and 23. We've always been so so close. They both live with me now - the 23 year old is my daughter, who graduated college a year ago. My son has problems emotionally from my abusive husband - his father, so doesn't work or go to school. Yet he doesn't do as much as he could for me. If he could - he would be out building his own life. So I feel guilty for the marriage - the parenting they didn't have from their father, and the illness robbing them of the mother they used to have. The shame and guilt for that are mounting to the point that I am feeling desperate. My daughter is getting married next April and we are for the first time having problems. Last night was so emotionally devastating that I felt suicidal. Of course I feel ridiculous for that, but it's how I feel.
Having my children's love and healthy relationship is one thing I've always had. They know how ill I am, and fear my death, yet love me and accept me and give me so much joy. To have them no longer close would be so hard to take. My daughter doesn't talk much - even though an academic genius - so I don't know how she's feeling about things. We have talked about how fun it would be to plan her wedding (before she actually became engaged) because I was a designer, floral arranger, builder, artist, seamstress, etc. - all the things that make a great wedding planner. She's felt so lucky. Then last night she went out and selected and purchased her gown without me and it was a sad, difficult time.
I am ANGRY that I am not able to do everything anymore. I am SAD that my children are distancing themselves from me. I am DEVASTATED that the church I have given my life and energy to is not there for me. God is there - but, of course, WE are not perfect people, and so it is very hard to keep loving someone who never gets better and who never can give back. I am convinced that self-pity has set in big time. The self-pity brings more shame, and the shame, more guilt. Then more depression and then anger and sadness. I'm caught in a vicious loop. I feel half way decent one day and I think I can turn things around, but then pain and severe illness and immobility take it away again.
Also medications mess with the emotions. I always remind myself that I have too many chemicals mixed up in my system - plus my organs are all effected now - diabetes and the entire endocrine system is being attacked by my autoimmune dysfunction. MS is just one of my many diseases. I am just desperate. I have been crying for 2 days and can't seem to stop.
A few weeks ago my mother (84) fell and broke her maxilla (upper jaw area) and I have been her caretaker. She then had cataract surgery and will be having her second next week. I don't know what I am going to do - I am feeling so weak and in so much pain.
Y'all - I FEEL DESPERATE and panicked. I thank anyone who read this entire mess of a post. I've never felt so alone in my life, and to feel that someone - anyone - but especially those who can relate - has read these feelings - is a blessing.
I too have felt thankful - but it has been for the fact that I had to come to realize that I am needy. I need God - I cannot handle life on my own. I have been broken, and I feel that's what needed to happen. I look forward to seeing the Lord and feel that I first need to accept life as I have it here. All of the negative feelings I have now tell me that I need help to sort them out. I need to climb out of my deep hole in order to be able to die content with what I have been given - with the burdens that I have been given to endure.
2 Corinthians 4:7- says "But we have this treasure in earthen vessels that the surpassing greatness of the power will be of God and not from ourselves; we are afflicted in every way, but not crushed; perplexed, but not despairing; persecuted, but not forsaken; struck down, but not destroyed; always carrying about in the body the dying of Jesus, so that the life of Jesus also may be manifested in our body. For we who live are constantly being delivered over to death for Jesus' sake, so that the life of Jesus also may be manifested in our mortal flesh. So death works in us, but life in you." and James 1:2 "Consider it all joy, my brethren, when you encounter various trials, knowing that the testing of your faith produces endurance."
So - I can only pray that I have the faith and wisdom to endure the emotional storm that I am facing. I know I need to get help for the intense emotional pain that is layered upon the physical. Pain plus emotional distress, plus financial and social support depleted = problems too difficult to bear.
Blessings to all of you, Jan
I am copying your post to a brand new questioon so you will be sure to get the responses you so much deserve. Please look for it here . lots of hugs to you and your wife, Lulu
My wife had just been diagnosed today with MS. Reading your posts not only brings a tear to my eye but also offers hope that there are others going through this too. What's my job as a husband to help my wife through this? She is the breadwinner and the dominate one in the marriage. Meaning she makes the rules and the way our girls are to be raised. My two girls are 5 and 3 and what should we expect of them through this? Any help is grateful. Thank you all for your stories. God bless.
Ten years ago, I couldn't walk because I suffered a severe MS attack that left me half paralyzed. I spent six months in recovery and therapy just to regain the ability to do everyday things like write with a pen or use a spoon to eat, I spent another year working hard to regain my mobility by practicing yoga and acupuncture.
While I was recovering, I vowed to change my life. I adopted a healthy lifestyle and diet along with a strong will to overcome this disease. I decided that when I regained my ability to walk again, I was going to spend every day living my life to the fullest.
There are inspiring stories you can view at http://www.iwalkbecause.org. I get particularly inspired by Lea's stories. If you or anyone you know have great stories to share that can inspire us, I understand they're collecting more for next year.
mxspdracer
"Life shrinks or expands in proportion to one's own courage." Anais Nin
While I was recovering, I vowed to change my life. I adopted a healthy lifestyle and diet along with a strong will to overcome this disease. I decided that when I regained my ability to walk again, I was going to spend every day living my life to the fullest.
There are inspiring stories you can view at http://www.iwalkbecause.org. I get particularly inspired by Lea's stories. If you or anyone you know have great stories to share that can inspire us, I understand they're collecting more for next year.
mxspdracer
"Life shrinks or expands in proportion to one's own courage." Anais Nin
DENIAL! That is what I try to do most of the time. I try to keep so busy that I do not think about what my body is doing. For some reason it does not decide to just go away though :)
Anger & lonliness - for a time my family treated me like the doctors do - like nothing is wrong. Hubby was getting frustrated & thought I was just being lazy. NOW He has read up lots & even keeps up with what is happening on this site! It is hard hearing the kids talk about me at times. My youngest child shared with his teacher that one of mommie's favorite things to do is NAP! That is sure not how I want my kids to see me.
Encouraged - I read many of your stories of how you have coped & what you are going thru & it brightens my day. So many strong & courageous people on this site it is amazing.
Hugs to all
Janette
Anger & lonliness - for a time my family treated me like the doctors do - like nothing is wrong. Hubby was getting frustrated & thought I was just being lazy. NOW He has read up lots & even keeps up with what is happening on this site! It is hard hearing the kids talk about me at times. My youngest child shared with his teacher that one of mommie's favorite things to do is NAP! That is sure not how I want my kids to see me.
Encouraged - I read many of your stories of how you have coped & what you are going thru & it brightens my day. So many strong & courageous people on this site it is amazing.
Hugs to all
Janette
You honor us all by letting us see into your deepest selves. Thank you for that. There is no way you all will ever know how many other people you reach by putting your words down. We have 200 or so active members, but another 1000 have joined the forum and uncounted 100's lurk, listen, and are helped by knowing they aren't alone.
DJ - Thank you for being honest about how you feel. It is a sign of deep respect to show us that honesty. Knowing you are in our midst gives me great joy. I have been low and wished that the end would somehow arrive - mainly from depression not pain - and told our friends hear about it. I felt that it was hypocritical to have people tell me I was strong. I will now tell you what they told me: You are strong because you are still here. You still reach out and touch others' hearts. The fact that you feel beaten down and tell us about is a strength more enduring than uttering optimistic phrases. Thank you for accepting our love and efforts to support.
Jan - I, too, gave my best years to an abusive husband. Thanks to you, too for telling us about the other things that really are more terminal for you, and I hope that you can find a way to share that with your family. They deserve to know and you deserve to have that invisible elephant out of your living room. You have been a wonderful friend here and thank you for showing us the respect of saying real things. You, too, are strong, but need to learn to accept help and to ask for it, telling your people why you really need it. Thanks for being here for us.
U2 - All of the things you suffer from are, indeedm valid and understandable. Yes, being told that you are a head case would cause anyone to withdraw. Knowing that you are being stonewalled would make anyone angry and frustrated. I have seen your strength from the first times you posted here. You're still you and through all of this have maintained your integrity and sobriety. I'm proud that you are my friend. Good luck with the remodel, the summer and your exercise. You are strong because you are still here.
GGrrl - You also have been a delight and a source of great support here. You have enriched us all by joining in, sharing, and asking. For every question asked by one, hundreds may see and revel in an answer. I know the ache of seeing the ability to do what I love disappear. I pray that your guitar-playing years stretch on for a long time.
Heather - I don't tell you often enough the depth that you offer to this forum. You remain a pivotal player in the family of souls struggling to make it through. This thread, which I just reread, is just another of the 100's of things that you have done for the people here out of love and the knowledge of what a group like this can be.
My emotions have leveled out after 10 years. I live vicariously through all of you. So I am angry, scared, frustrated, and wistful. When external things come up (like my remodel) and I drift away from being here everyday, I begin to feel hollow and useless. Those are the feelings that have permeated my life since I left practice. You keep me filled with purpose and give form to who I am and can be.
I thank you all.
Quix
DJ - Thank you for being honest about how you feel. It is a sign of deep respect to show us that honesty. Knowing you are in our midst gives me great joy. I have been low and wished that the end would somehow arrive - mainly from depression not pain - and told our friends hear about it. I felt that it was hypocritical to have people tell me I was strong. I will now tell you what they told me: You are strong because you are still here. You still reach out and touch others' hearts. The fact that you feel beaten down and tell us about is a strength more enduring than uttering optimistic phrases. Thank you for accepting our love and efforts to support.
Jan - I, too, gave my best years to an abusive husband. Thanks to you, too for telling us about the other things that really are more terminal for you, and I hope that you can find a way to share that with your family. They deserve to know and you deserve to have that invisible elephant out of your living room. You have been a wonderful friend here and thank you for showing us the respect of saying real things. You, too, are strong, but need to learn to accept help and to ask for it, telling your people why you really need it. Thanks for being here for us.
U2 - All of the things you suffer from are, indeedm valid and understandable. Yes, being told that you are a head case would cause anyone to withdraw. Knowing that you are being stonewalled would make anyone angry and frustrated. I have seen your strength from the first times you posted here. You're still you and through all of this have maintained your integrity and sobriety. I'm proud that you are my friend. Good luck with the remodel, the summer and your exercise. You are strong because you are still here.
GGrrl - You also have been a delight and a source of great support here. You have enriched us all by joining in, sharing, and asking. For every question asked by one, hundreds may see and revel in an answer. I know the ache of seeing the ability to do what I love disappear. I pray that your guitar-playing years stretch on for a long time.
Heather - I don't tell you often enough the depth that you offer to this forum. You remain a pivotal player in the family of souls struggling to make it through. This thread, which I just reread, is just another of the 100's of things that you have done for the people here out of love and the knowledge of what a group like this can be.
My emotions have leveled out after 10 years. I live vicariously through all of you. So I am angry, scared, frustrated, and wistful. When external things come up (like my remodel) and I drift away from being here everyday, I begin to feel hollow and useless. Those are the feelings that have permeated my life since I left practice. You keep me filled with purpose and give form to who I am and can be.
I thank you all.
Quix
I finally had a good cry after I talked to the Rebif folks, and again with my husband, yesterday. I guess the grieving and uncertainty are finally hitting me. I feel better, now, and I still plan on living life to the fullest.
Jan, I'm so sorry to hear of your dad's passing. Big hugs...
UF2, as frustrating as the VA is, don't forget to live. My brother has a lament - "There's too much life getting in the way of living!" So, 18 yrs C&S, he's living, darnit! Good luck with your remodel, don't let the b**tards get you down, but keep being the squeaky wheel, too!
Hugs to All,
Guitar_grrrl
Jan, I'm so sorry to hear of your dad's passing. Big hugs...
UF2, as frustrating as the VA is, don't forget to live. My brother has a lament - "There's too much life getting in the way of living!" So, 18 yrs C&S, he's living, darnit! Good luck with your remodel, don't let the b**tards get you down, but keep being the squeaky wheel, too!
Hugs to All,
Guitar_grrrl
frustration, frustration, anger, numbness ...
the sense of betrayal within myself when my self told me for years there was something wrong, that it wasn't a simple matter of needing psych visits like the VA loves to do. then going along with that path. now i know it isn't me but a disease, at least clinical tests prove that.
the loss of relationships and fun socialness due to withdrawing because i never knew how i was going to feel day to day, week to week. it became so tiring explaining this to friends i finally gave up on it. and with the doctor's not getting to a diagnosis, it made it that much harder.
the VA has been very selective in what they put in the history notes, so when i would go and discuss the issues all they saw were the depression and ct's and very low MRIs that made no mention of demyelinating disease. so i now i know why they looked at me so funny, like "where the heck you coming from". so add another notch of frustration to my belt on that one.
some years back the symptoms got way worse and the frustration shot through the roof. most people just thought i was weak and depressed. how was i to know it was fatigue and such associated with a disease. and of course the VA treated me as a head case. so who in this situation wouldn't withdraw some?
lack of intimacy desires and performance fears due to things there began not to work well some years ago had contributed to my social withdraw. i now have a med for that and it helps. but i never know how my body is going to feel and this effects the mental part or is that the other way around? you folks know what i mean.
i go to support groups, i pray simple prayers for strength and courage, i now take meds once in awhile to help with symptoms, i have maybe two friends that actually believe me. i showed them a few papers and test results so they know i'm not making it up. and they too have had the run-a-around at the VA and civilian doctors.
frustration, frustration, anger, numbness ...
the sense of betrayal within myself when my self told me for years there was something wrong, that it wasn't a simple matter of needing psych visits like the VA loves to do. then, going along with that path and always knowing it was leading nowhere, that i was just being patronized and brushed aside. now, i know it isn't me but a disease, at least clinical tests prove that.
the loss of relationships and fun socialness due to withdrawing because i never knew how i was going to feel day to day, week to week. it became so tiring explaining this to friends i finally gave up on it. and with the doctor's not getting to a diagnosis, it made it that much harder to deal with.
the VA has been very selective in what they put in the history notes, so when i would go and discuss the issues with a doctor all that doctor saw were the listing for depression, ct's, and very low MRIs that made no mention of demyelinating disease the way they worded it. so, i now i know why they looked at me so funny, like "where the heck are you coming from vet". so add another notch of frustration to my belt on that one.
some years back the symptoms got way worse and the frustration shot through the roof at the sametime. most people just thought i was weak and depressed...at least that is how i took their actions and words towards me. how was i to know it was fatigue and other such symptoms associated with a disease? and of course the VA, as usual, treated me as a head case. let me ask, who in this situation wouldn't withdraw socially a bit?
lack of intimacy desires and performance fears due to things began not to work well some years ago had contributed to my social withdraw also. hard to be intimately fun when one doesn't feel well. i now have a med for that and it helps some. but, i never know how my body is going to feel and this effects the mental part of life or is that the other way around? you folks know what i mean.
i quit drinking 18.9 years ago & still go to support/fellowship groups, i pray simple prayers for strength and courage, i now take meds once in awhile to help with symptoms, and i have maybe two friends that actually believe me. i showed them a few papers and test results so they know i'm not making it up. and they too have had the run-a-around at the VA and civilian doctors so we a bond with that. i email other veterans who have the same uphill battleground and that helps to share each other's story. when your own family doesn't truly believe you, its a bit hard when i think about it. although, i don't blame them. being in "demyelinating disease of the cns" limboland is just too difficult to explain to anyone.
recently, the local neuro suggested i speak with a psych who specialized in neuro-illnesses. he mentioned something about ptsd too. i said i would try that and asked him to suggest one. he couldn't because he didn't know any!! you read that right! LOL i told him considering the VA and my history with them trying to diagnosis my CNS problem, why would i trust an avg shrink with no experience in demyelinating disease and what that puts a patient through? he said it was a shame i didn't trust the VA. so, another notch in the frustration belt.
some days i'm just lost because i feel so downright fatigued, lack of real sleep, some balance issues, the pain, feeling i'm going nuts, my nervous system being out of sync, etc., and then out of the blue i feel like a 20yo kid full of life. but i know it won't last but i try to do something fun on those days.
i'm going to start some part time work soon. after leaving an analyst job in norcal two years ago, scores of resumes and interviews here, just getting to say "i'm going to work" will help my psych out a bit. i think i blew some of those interviews due my lack of energy, losing a word in mid-sentence and trying to keep up. like i said, i can't plan which days i'll have an interview and with temps here getting over 110 in the Summer, a 3-piece suit, well, is it any wonder i look fatigued? LOL
i seem to just be rambling now but it is so much easier to write than to speak and this is good for me to just jot some feelings down here.
i'm going to put in some effort to do a little upper body workout this AM, then get a buddy and go to my townhome i'm remodeling and hang some closet racks. i'll start moving in this week. this demyelinating disease merry-go-round i've been on over the years hasn't killed my spirit but i admit it has knocked me down many times. luckily i've been able to get back up into the fight, try to see this through, and on my good days/nights, still have some good fun.
the sense of betrayal within myself when my self told me for years there was something wrong, that it wasn't a simple matter of needing psych visits like the VA loves to do. then going along with that path. now i know it isn't me but a disease, at least clinical tests prove that.
the loss of relationships and fun socialness due to withdrawing because i never knew how i was going to feel day to day, week to week. it became so tiring explaining this to friends i finally gave up on it. and with the doctor's not getting to a diagnosis, it made it that much harder.
the VA has been very selective in what they put in the history notes, so when i would go and discuss the issues all they saw were the depression and ct's and very low MRIs that made no mention of demyelinating disease. so i now i know why they looked at me so funny, like "where the heck you coming from". so add another notch of frustration to my belt on that one.
some years back the symptoms got way worse and the frustration shot through the roof. most people just thought i was weak and depressed. how was i to know it was fatigue and such associated with a disease. and of course the VA treated me as a head case. so who in this situation wouldn't withdraw some?
lack of intimacy desires and performance fears due to things there began not to work well some years ago had contributed to my social withdraw. i now have a med for that and it helps. but i never know how my body is going to feel and this effects the mental part or is that the other way around? you folks know what i mean.
i go to support groups, i pray simple prayers for strength and courage, i now take meds once in awhile to help with symptoms, i have maybe two friends that actually believe me. i showed them a few papers and test results so they know i'm not making it up. and they too have had the run-a-around at the VA and civilian doctors.
frustration, frustration, anger, numbness ...
the sense of betrayal within myself when my self told me for years there was something wrong, that it wasn't a simple matter of needing psych visits like the VA loves to do. then, going along with that path and always knowing it was leading nowhere, that i was just being patronized and brushed aside. now, i know it isn't me but a disease, at least clinical tests prove that.
the loss of relationships and fun socialness due to withdrawing because i never knew how i was going to feel day to day, week to week. it became so tiring explaining this to friends i finally gave up on it. and with the doctor's not getting to a diagnosis, it made it that much harder to deal with.
the VA has been very selective in what they put in the history notes, so when i would go and discuss the issues with a doctor all that doctor saw were the listing for depression, ct's, and very low MRIs that made no mention of demyelinating disease the way they worded it. so, i now i know why they looked at me so funny, like "where the heck are you coming from vet". so add another notch of frustration to my belt on that one.
some years back the symptoms got way worse and the frustration shot through the roof at the sametime. most people just thought i was weak and depressed...at least that is how i took their actions and words towards me. how was i to know it was fatigue and other such symptoms associated with a disease? and of course the VA, as usual, treated me as a head case. let me ask, who in this situation wouldn't withdraw socially a bit?
lack of intimacy desires and performance fears due to things began not to work well some years ago had contributed to my social withdraw also. hard to be intimately fun when one doesn't feel well. i now have a med for that and it helps some. but, i never know how my body is going to feel and this effects the mental part of life or is that the other way around? you folks know what i mean.
i quit drinking 18.9 years ago & still go to support/fellowship groups, i pray simple prayers for strength and courage, i now take meds once in awhile to help with symptoms, and i have maybe two friends that actually believe me. i showed them a few papers and test results so they know i'm not making it up. and they too have had the run-a-around at the VA and civilian doctors so we a bond with that. i email other veterans who have the same uphill battleground and that helps to share each other's story. when your own family doesn't truly believe you, its a bit hard when i think about it. although, i don't blame them. being in "demyelinating disease of the cns" limboland is just too difficult to explain to anyone.
recently, the local neuro suggested i speak with a psych who specialized in neuro-illnesses. he mentioned something about ptsd too. i said i would try that and asked him to suggest one. he couldn't because he didn't know any!! you read that right! LOL i told him considering the VA and my history with them trying to diagnosis my CNS problem, why would i trust an avg shrink with no experience in demyelinating disease and what that puts a patient through? he said it was a shame i didn't trust the VA. so, another notch in the frustration belt.
some days i'm just lost because i feel so downright fatigued, lack of real sleep, some balance issues, the pain, feeling i'm going nuts, my nervous system being out of sync, etc., and then out of the blue i feel like a 20yo kid full of life. but i know it won't last but i try to do something fun on those days.
i'm going to start some part time work soon. after leaving an analyst job in norcal two years ago, scores of resumes and interviews here, just getting to say "i'm going to work" will help my psych out a bit. i think i blew some of those interviews due my lack of energy, losing a word in mid-sentence and trying to keep up. like i said, i can't plan which days i'll have an interview and with temps here getting over 110 in the Summer, a 3-piece suit, well, is it any wonder i look fatigued? LOL
i seem to just be rambling now but it is so much easier to write than to speak and this is good for me to just jot some feelings down here.
i'm going to put in some effort to do a little upper body workout this AM, then get a buddy and go to my townhome i'm remodeling and hang some closet racks. i'll start moving in this week. this demyelinating disease merry-go-round i've been on over the years hasn't killed my spirit but i admit it has knocked me down many times. luckily i've been able to get back up into the fight, try to see this through, and on my good days/nights, still have some good fun.
Hi all - good thing it's hard for me to type - should keep this a reasonable length. Being both transparent AND introspective, I have no trouble being in touch w/ my feelings. It's been a long, tough journey due to multiple diseases combined with an abusive husband.
I've always been the strong one - the one that does everything, handles everything, helps everyone else w/ their problems etc. No one has been able to think of me any differently, which is partly my fault. It's a role I'm used to, but also like. I'll admit to the pain, but not the need for help. If I say I need help, it's still hard for me to accept it, or sit back and let others do things I feel I "should" do.
I think I've been in partial denial because some of my conditions are terminal, yet I don't seem to truly accept it - and the conditions that are the most serious, people haven't heard of. People have heard of MS, but not Sceroderma, or pulmonary hypertension etc. It gets frustrating! Even family (not much of one left) doesn't understand how sick I am.
One of the hardest things is my kids - they were so young when I was a dynamo - a real physical machine. They will always remember me as sick. They view me as strong, but I grieve their not having known me before. I grieve the loss of that person I still find myself trying to be, as well. All of my "good" years were spent trying to save a marriage with an evil, abusive man - 27 years! BUT - that pain brought me back to the Lord, and meant I raised my kids to love Him too. So those weren't the only "good" years.
Adversity has made me a better person - that I believe strongly. But sometimes I get so overwhelmed by my pain, and the unbelievably broad scope of my illnesses. There's not a single organ or system not greatly affected by disease. Then I hear, "you look good, you must be better!" - but I don't ever get better. I've lost friends who are willing to help and "be there" for the short term - but when it never ends and I can't reciprocate or be my "old self" they fade away. I'm no longer asked to lead groups at church, or teach etc. When I need contact and support the most - I have none.
I've lost faith in many people. Most are self serving and don't want to focus on others. Plus, lives are so busy, no one has the margin to help even if they want to. THAT I believe is a terrible societal shift. Everyone needs spare time to give to their children, neighbors, and friends, but too often it's not there. Everyone's working to get bigger homes and more toys - it's a shame because everyone suffers. There's no one who has the time to help me - even within the church. They've helped, but it's not often and hard to organize.
Sadness, anger, bitterness, frustration - all are felt when I think of how much I still have to offer. My mind still works (sort of lol) - it's just my body that's unreliable. I don't want to be put out to pasture, yet feel I have been to a degree. I am thankful for this site and all the caring people here. It would seem it takes having a chronic illness to appreciate its effect.
Well, my hand can't take anymore one finger pecking. Thanks to those who "listened" - I enjoyed reading everyone else's thoughts as well.
Blessings, Jan
I've always been the strong one - the one that does everything, handles everything, helps everyone else w/ their problems etc. No one has been able to think of me any differently, which is partly my fault. It's a role I'm used to, but also like. I'll admit to the pain, but not the need for help. If I say I need help, it's still hard for me to accept it, or sit back and let others do things I feel I "should" do.
I think I've been in partial denial because some of my conditions are terminal, yet I don't seem to truly accept it - and the conditions that are the most serious, people haven't heard of. People have heard of MS, but not Sceroderma, or pulmonary hypertension etc. It gets frustrating! Even family (not much of one left) doesn't understand how sick I am.
One of the hardest things is my kids - they were so young when I was a dynamo - a real physical machine. They will always remember me as sick. They view me as strong, but I grieve their not having known me before. I grieve the loss of that person I still find myself trying to be, as well. All of my "good" years were spent trying to save a marriage with an evil, abusive man - 27 years! BUT - that pain brought me back to the Lord, and meant I raised my kids to love Him too. So those weren't the only "good" years.
Adversity has made me a better person - that I believe strongly. But sometimes I get so overwhelmed by my pain, and the unbelievably broad scope of my illnesses. There's not a single organ or system not greatly affected by disease. Then I hear, "you look good, you must be better!" - but I don't ever get better. I've lost friends who are willing to help and "be there" for the short term - but when it never ends and I can't reciprocate or be my "old self" they fade away. I'm no longer asked to lead groups at church, or teach etc. When I need contact and support the most - I have none.
I've lost faith in many people. Most are self serving and don't want to focus on others. Plus, lives are so busy, no one has the margin to help even if they want to. THAT I believe is a terrible societal shift. Everyone needs spare time to give to their children, neighbors, and friends, but too often it's not there. Everyone's working to get bigger homes and more toys - it's a shame because everyone suffers. There's no one who has the time to help me - even within the church. They've helped, but it's not often and hard to organize.
Sadness, anger, bitterness, frustration - all are felt when I think of how much I still have to offer. My mind still works (sort of lol) - it's just my body that's unreliable. I don't want to be put out to pasture, yet feel I have been to a degree. I am thankful for this site and all the caring people here. It would seem it takes having a chronic illness to appreciate its effect.
Well, my hand can't take anymore one finger pecking. Thanks to those who "listened" - I enjoyed reading everyone else's thoughts as well.
Blessings, Jan
It's almost bone chilling that this post came forward. Several hours after I wrote this post about emotions, I learned that the love of my life, for all my years on this earth, died unexpectedly.....my precious daddy. Don't have to tell you all what my emotions were like on the evening of January 13, 2008.
DJ, I wonder if my Daddy is trying to tell me something? Maybe he and God are trying to tell me that "I" am the one that is NOT dealing with my emotions. I haven't taken the proper time to grieve. Probably because I am so happy that my daddy is in Heaven with my mother. He was emotionally abused by his second wife. His death was a release. Sad for the void it left in my life, but I know that my daddy is still with me in spirit.
I love you girl. Always,
Heather
DJ, I wonder if my Daddy is trying to tell me something? Maybe he and God are trying to tell me that "I" am the one that is NOT dealing with my emotions. I haven't taken the proper time to grieve. Probably because I am so happy that my daddy is in Heaven with my mother. He was emotionally abused by his second wife. His death was a release. Sad for the void it left in my life, but I know that my daddy is still with me in spirit.
I love you girl. Always,
Heather
Wow! After lurking and participating for 7 months, now, I know I've seen this thread before. I'm finally ready to say something.
I tell people I'm done freaking out over my diagnosis, but I still freak out inside, worrying about not playing my guitar (my hands spaz now and then), riding my bike on those long, challenging, mountainous routes ( I stick pretty much to the flats, now).
I worry about losing my strength.
I've suffered depression off and on since I was 10. Therapy is a blessing, and now, I can cope well, and even though sometimes I have suicidal ideations, I know how to deal with them and extinguish that flame, too. Now I worry about the Interferons, and I've told my neuro about my past depressions. We'll discuss this more tomorrow.
I'm REALLY angry! Why me?!? My husband is still in denial to some degree, and that pi**es me off, too. He did ask about DMDs the other day during a walk, and I look at this in a positive way.
On the other hand, I'm inspired, too. The woman who summited Everest last month is a rock star in my mind. I'm still riding, I'm paddling the Westwater Canyon (Colorado River) in an inflatable kayak in August. I'm just going to keep on keeping on...
I still haven't had a good cry over this, yet, and I wonder if that makes me weird?
One day at a time.
Love to all,
Guitar_grrrl
I tell people I'm done freaking out over my diagnosis, but I still freak out inside, worrying about not playing my guitar (my hands spaz now and then), riding my bike on those long, challenging, mountainous routes ( I stick pretty much to the flats, now).
I worry about losing my strength.
I've suffered depression off and on since I was 10. Therapy is a blessing, and now, I can cope well, and even though sometimes I have suicidal ideations, I know how to deal with them and extinguish that flame, too. Now I worry about the Interferons, and I've told my neuro about my past depressions. We'll discuss this more tomorrow.
I'm REALLY angry! Why me?!? My husband is still in denial to some degree, and that pi**es me off, too. He did ask about DMDs the other day during a walk, and I look at this in a positive way.
On the other hand, I'm inspired, too. The woman who summited Everest last month is a rock star in my mind. I'm still riding, I'm paddling the Westwater Canyon (Colorado River) in an inflatable kayak in August. I'm just going to keep on keeping on...
I still haven't had a good cry over this, yet, and I wonder if that makes me weird?
One day at a time.
Love to all,
Guitar_grrrl
WOW! UNBELIEVABLE ! I just love the way life works... You know I don't even care if this post you started over 1 & 1/2 years ago isn't going be read by any one.
My emotions are all over the place, every time I get on "the fast track" of losing more ground it feels like the "Morning Process" starts over again.. Every one seems to think I am strong, but I feel like I have been kick to my knees and they aren't holding me up. The past two years have very rough, kind of like being in the middle of a storm that keeps raging & gets worse rather than clearing up.
I am scared, ticked off, I am exhausted because almost as soon as I fall to sleep the spasms get worse, now I even "up-chuck while sleeping which is very dangerous. It happened for the second time Tonight, the first time was Monday morning, plus the battery of test are very difficult because of having to lay on my back which is now broken in three new places as well as having several collapsed vertabrae's.
To be completely HONEST I am ready for the cr#@ to be over. Please don't misunderstand I would never end "IT" myself, not that the thought hasn't been around. I could never put my Children, Grandchildren through that & the rest of the people who share my world.
The other side of these dark feelings are the lights that Shines from the Love &Support that surrounds me. It is said time & time again that Our Lord never gives us more than we can handle but I must admit that I question it.
I feel like I am not making a whole lot of sense so I'm going to sign off...Hugs going out to all of you, {{{~!~}}}
My emotions are all over the place, every time I get on "the fast track" of losing more ground it feels like the "Morning Process" starts over again.. Every one seems to think I am strong, but I feel like I have been kick to my knees and they aren't holding me up. The past two years have very rough, kind of like being in the middle of a storm that keeps raging & gets worse rather than clearing up.
I am scared, ticked off, I am exhausted because almost as soon as I fall to sleep the spasms get worse, now I even "up-chuck while sleeping which is very dangerous. It happened for the second time Tonight, the first time was Monday morning, plus the battery of test are very difficult because of having to lay on my back which is now broken in three new places as well as having several collapsed vertabrae's.
To be completely HONEST I am ready for the cr#@ to be over. Please don't misunderstand I would never end "IT" myself, not that the thought hasn't been around. I could never put my Children, Grandchildren through that & the rest of the people who share my world.
The other side of these dark feelings are the lights that Shines from the Love &Support that surrounds me. It is said time & time again that Our Lord never gives us more than we can handle but I must admit that I question it.
I feel like I am not making a whole lot of sense so I'm going to sign off...Hugs going out to all of you, {{{~!~}}}
Hi
I find the hardest thing of being ill is the lost of the life you had, you grieve for that life like you do a person and that took me by surprise.
then their's the guilt you feel and as i am a mum with young girls i feel guilty alot that i cant drive them to there clubs anymore, i cant hardley come to watch them in their plays and if i do i come in a wheelchair and i hate the questions the other kids ask them!
i hate i have to have strangers in my house to do all the things i should be doing, and
i hate that my kids never have friends over and no one ask them over either.
I hate i lost friends through this, and i have lost my marriage through this illness and am a single mum i wish i could walk away like he has.
I hate that somedays all i talk about is my meds or how i am feeling, that my friends wont tell me how they are feeling cause they feel sorry for me and dont wont to put there feelings on me but i'm dying to know as i want to talk about other things things that are important to them.
I hate seeing my kids worry about me, and i hate how much responsibility they have to take on.
I hate the way people look at me in the wheelchair,and i hate that that should bother me.
i hate i cant even take my dog for a walk never mind run with her like i used too.
i hate that no body not even my closest friends know how this feels (except you guys and doni my best mate)
i hate i am alone with no family to help me.
But i love the good days, the days i get out in the wheelchair with my kids.
The days i make it to church or an old friend pops round for a cup of tea and a catch up.
I love the fact i have got a new mobilty car coming and i might get my independance back be a mother again go see my friends that will be a great day when i drive again.
I love my faith,the sun (when not to hot) my pets my kids i am still blessed.
I love the new friends i have made on here and the outsideworld because of my illness.
although i have been to the darkest place even considered suicide i came out the other side, and although i face uncertainty everyday i still try to find one thing to make me smile everyday.
I cant say i dont worry of the furtue as i do i worry, i worry this is more then fibro thats why they are retesting for MS that for 2 yrs or more they have missed something and thats why i am disabled now and this is only the start but i also have hope that they did miss something that this time they will find something and there start treatment and i wont get any worse.
everyday is different and sometimes thats good but most of the time that *****!!
I'd loved all your post and cried at some, we are a truely unique family.
sam
I find the hardest thing of being ill is the lost of the life you had, you grieve for that life like you do a person and that took me by surprise.
then their's the guilt you feel and as i am a mum with young girls i feel guilty alot that i cant drive them to there clubs anymore, i cant hardley come to watch them in their plays and if i do i come in a wheelchair and i hate the questions the other kids ask them!
i hate i have to have strangers in my house to do all the things i should be doing, and
i hate that my kids never have friends over and no one ask them over either.
I hate i lost friends through this, and i have lost my marriage through this illness and am a single mum i wish i could walk away like he has.
I hate that somedays all i talk about is my meds or how i am feeling, that my friends wont tell me how they are feeling cause they feel sorry for me and dont wont to put there feelings on me but i'm dying to know as i want to talk about other things things that are important to them.
I hate seeing my kids worry about me, and i hate how much responsibility they have to take on.
I hate the way people look at me in the wheelchair,and i hate that that should bother me.
i hate i cant even take my dog for a walk never mind run with her like i used too.
i hate that no body not even my closest friends know how this feels (except you guys and doni my best mate)
i hate i am alone with no family to help me.
But i love the good days, the days i get out in the wheelchair with my kids.
The days i make it to church or an old friend pops round for a cup of tea and a catch up.
I love the fact i have got a new mobilty car coming and i might get my independance back be a mother again go see my friends that will be a great day when i drive again.
I love my faith,the sun (when not to hot) my pets my kids i am still blessed.
I love the new friends i have made on here and the outsideworld because of my illness.
although i have been to the darkest place even considered suicide i came out the other side, and although i face uncertainty everyday i still try to find one thing to make me smile everyday.
I cant say i dont worry of the furtue as i do i worry, i worry this is more then fibro thats why they are retesting for MS that for 2 yrs or more they have missed something and thats why i am disabled now and this is only the start but i also have hope that they did miss something that this time they will find something and there start treatment and i wont get any worse.
everyday is different and sometimes thats good but most of the time that *****!!
I'd loved all your post and cried at some, we are a truely unique family.
sam
Hi All,
Just want to thank Heather again for this wonderful thread, and thank DVision for bumping it up for us!!
Just want to thank Heather again for this wonderful thread, and thank DVision for bumping it up for us!!
Hi!!!!!!
I was a poster on this topic! I am still in Dx'd. I really haven't pursued it much. I just had a hyterectomy on Wed. It was a partial but took my right ovary. It was done laproscopically!!! 4 little incisions!!! I had a pretty bad case of endometriosis.
I just had to take a break from neurologist. LOL. My gyno helped in taking away one more stressor in my life.
Now I can concentrate on healing, getting back to exercising, eating right and seeing how my symptoms improve or not.
My emotional state had leveled out. I have accepted the chronic illness.
Of course there are days that I lean on my fiancé. But I do good most of the time :)
Cyn
I was a poster on this topic! I am still in Dx'd. I really haven't pursued it much. I just had a hyterectomy on Wed. It was a partial but took my right ovary. It was done laproscopically!!! 4 little incisions!!! I had a pretty bad case of endometriosis.
I just had to take a break from neurologist. LOL. My gyno helped in taking away one more stressor in my life.
Now I can concentrate on healing, getting back to exercising, eating right and seeing how my symptoms improve or not.
My emotional state had leveled out. I have accepted the chronic illness.
Of course there are days that I lean on my fiancé. But I do good most of the time :)
Cyn
Rereading this makes me sad. So many of our faithful members posted, but have since sort of faded off the forum. Where are you, my friends?
I MISS you.
Love,
ess
I MISS you.
Love,
ess
With the recent discussions of how MS affects our emotions, I thought I would revive this great thread that Heather started last year.
There are a lot of new members in this forum and it would be nice to hear from all of you on this topic.
It would also be interesting to hear how those of you who posted on this thread are doing now. Some of the members who posted were in limbo at that time, but since then may have been diagnosed. Others, who were already diagnosed, have been living with MS for another year. Do you still feel the same as you did a year ago? How have your emotional responses changed? Emotionally, are you doing worse, better, or the same?
In re-reading my post, until very recently I had become much less anxious about my health than I was then; was feeling more calm and more upbeat and feeling somewhat well-adjusted to living with a chronic illness. My treatments were going well, I no longer had any anxiety about self-injection; I felt even more hopeful about all the research on MS that I have read about this past year. I still feel grateful, and my personal relationships have been strengthened since I stopped being so secretive and let people in on what was going on with my health.
However, due to recent developments, in many ways I feel I am back to square one at the moment, as I await news of my recent blood test for NMO/Devic's disease. I expect the whole cycle of grief to begin again if in fact it turns out I have been misdiagnosed. However, I do feel like I'm now stronger emotionally to deal with it, than I was when I was first faced with an MS diagnosis. I guess we'll see.
~doublevision~
There are a lot of new members in this forum and it would be nice to hear from all of you on this topic.
It would also be interesting to hear how those of you who posted on this thread are doing now. Some of the members who posted were in limbo at that time, but since then may have been diagnosed. Others, who were already diagnosed, have been living with MS for another year. Do you still feel the same as you did a year ago? How have your emotional responses changed? Emotionally, are you doing worse, better, or the same?
In re-reading my post, until very recently I had become much less anxious about my health than I was then; was feeling more calm and more upbeat and feeling somewhat well-adjusted to living with a chronic illness. My treatments were going well, I no longer had any anxiety about self-injection; I felt even more hopeful about all the research on MS that I have read about this past year. I still feel grateful, and my personal relationships have been strengthened since I stopped being so secretive and let people in on what was going on with my health.
However, due to recent developments, in many ways I feel I am back to square one at the moment, as I await news of my recent blood test for NMO/Devic's disease. I expect the whole cycle of grief to begin again if in fact it turns out I have been misdiagnosed. However, I do feel like I'm now stronger emotionally to deal with it, than I was when I was first faced with an MS diagnosis. I guess we'll see.
~doublevision~
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