Pouring Out My Soul
For many yrs. thought I might be bi-polar, but do not fit the diagnosis. I never really had depression (alot of stress at times though.) I definitely had hyper activity attacks, but I always used them for useful things and was organized and responsible. When I trained in social work, I realized that my hyper attacks had manic tendencies: less sleep, racing thoughts, explosive energy and ambition. As the CFS has worsened over many years, the ambition, and just plain happiness has diminished. I have lost the ability to read or analyze much, handle stress, clean out a closet, etc...stuff I did for years as a mother running a household for 16 years.
People that know me are very impressed by me when they hear all I do: belong to a local book club, active theatre group, just finished 15 yrs volunteering at the large museum, sing at a folk cafe open mic almost every weekend, etc.. However, within myself each day is a nightmare and I cannot describe how hard it is to go to,each event.
Yes, I have found some very interesting activities, have my own car,finally fewer money worries and a husband that will do all the heavy groceries as long as I organize a good list and cook every night. I often feel guilty that I am suffering physically so much when I am at a fun event and cannot seem to enjoy. I cannot express the rage and grief I feel and the isolation of not being able to tell someone what it is really like. (Truth be told, I do tell people how I feel, but only a few really understand or care about how hard it is.)
I have been coming home for 25 yrs, trembling and almost in tears, every day. It is the price I pay. Staying home does not make me better most of the time. However in a long term severe relapse, I have to give up alot. This winter has been such for 3 months. I read once that when people with cfs start to feel remission alot of feelings may emerge, like depression or anger. They realize how sick they really are. I have been through this before and now it is happening again. Starting to feel better and feeling like an old life is coming back.
I am always relieved of course, but very emotional, full of grief and anger. That life is gone. I am like an old woman who lives in a mystic haze of past memory, marveling at all the things I've done in my life. Many passionate relationships, 2 marriages, 9 years of post secondary and joining many, many social justice communities in Toronto meeting the most intelligent, compassionate people on the planet.
It has been a challenge for me to appreciate what I have now and feel content. The main reason is physical suffering. As many know CFS can bring on a multitude of severe symptoms but also chronic anxiety, panic attacks ,clinical depression,hostility and severe irritability. I am so angry I am not the person I used to,be. Even when I see reminders of my past life I feel so much grief and rage I am sick to my stomach. When I go out I love to greet people and chat. I have a good sense of humour and enjoy the local community banter. But deep inside, when I see how easy it is for them to happy and mobile without being so sick all the time like me, I want to cry and am filled with rage.
Today I am letting out the anger, loss,grief, sadness and the enormous pain in my heart as to how devastating this illness is to me and to so, so many people all,over the world. My heart breaks and I pray each day for all of us. Thanks for listening and I want each DS friend to know that the sharing on this site has blessed my life so much in the last 4 months.
Later on I want to share with you all the story of losing my daughter who is now 35 yrs old. When I have the energy I will share my experience if anyone is interested. Of course it explains alot of grief I feel, but this illness, believe it or not is worse than losing a child! My daughter "left" the family at age 19 and cut off all relatives. We have not seen her in 17 yrs and don't know where she is. The first few yrs we "found" her, carefully approached and she said stay away. It is a long story, I feel she may have mental health issues.
My CFS takes all of my energy every day. But I carry the daily grief that I lost my best friend, only child, that lived with me for 16 years in a loving and active family home with many memories. She has thrown it all away, it's like it never happened. I have to wait until I am physically stronger before I can deal with this grief through counseling and maybe a group. I have started a slow process last summer. Does anyone understand when I say that there are emotional things I cannot deal with for months, years ,at a time because the illness is so severe? People have no idea how that pain can sit in your spirit for yrs and you feel powerless.
Even though I almost dread every day afraid of how sick I'll be, I now believe there is a divine plan in my life. This has given me hope through all this daily physical and mental anguish. Now my dear DS friends, go rest your eyes and reflect on what your own spirit tells you about your unique journey. If the Universe can make any good of all my suffering and loss than it surely can do it for you and everyone.
People that know me are very impressed by me when they hear all I do: belong to a local book club, active theatre group, just finished 15 yrs volunteering at the large museum, sing at a folk cafe open mic almost every weekend, etc.. However, within myself each day is a nightmare and I cannot describe how hard it is to go to,each event.
Yes, I have found some very interesting activities, have my own car,finally fewer money worries and a husband that will do all the heavy groceries as long as I organize a good list and cook every night. I often feel guilty that I am suffering physically so much when I am at a fun event and cannot seem to enjoy. I cannot express the rage and grief I feel and the isolation of not being able to tell someone what it is really like. (Truth be told, I do tell people how I feel, but only a few really understand or care about how hard it is.)
I have been coming home for 25 yrs, trembling and almost in tears, every day. It is the price I pay. Staying home does not make me better most of the time. However in a long term severe relapse, I have to give up alot. This winter has been such for 3 months. I read once that when people with cfs start to feel remission alot of feelings may emerge, like depression or anger. They realize how sick they really are. I have been through this before and now it is happening again. Starting to feel better and feeling like an old life is coming back.
I am always relieved of course, but very emotional, full of grief and anger. That life is gone. I am like an old woman who lives in a mystic haze of past memory, marveling at all the things I've done in my life. Many passionate relationships, 2 marriages, 9 years of post secondary and joining many, many social justice communities in Toronto meeting the most intelligent, compassionate people on the planet.
It has been a challenge for me to appreciate what I have now and feel content. The main reason is physical suffering. As many know CFS can bring on a multitude of severe symptoms but also chronic anxiety, panic attacks ,clinical depression,hostility and severe irritability. I am so angry I am not the person I used to,be. Even when I see reminders of my past life I feel so much grief and rage I am sick to my stomach. When I go out I love to greet people and chat. I have a good sense of humour and enjoy the local community banter. But deep inside, when I see how easy it is for them to happy and mobile without being so sick all the time like me, I want to cry and am filled with rage.
Today I am letting out the anger, loss,grief, sadness and the enormous pain in my heart as to how devastating this illness is to me and to so, so many people all,over the world. My heart breaks and I pray each day for all of us. Thanks for listening and I want each DS friend to know that the sharing on this site has blessed my life so much in the last 4 months.
Later on I want to share with you all the story of losing my daughter who is now 35 yrs old. When I have the energy I will share my experience if anyone is interested. Of course it explains alot of grief I feel, but this illness, believe it or not is worse than losing a child! My daughter "left" the family at age 19 and cut off all relatives. We have not seen her in 17 yrs and don't know where she is. The first few yrs we "found" her, carefully approached and she said stay away. It is a long story, I feel she may have mental health issues.
My CFS takes all of my energy every day. But I carry the daily grief that I lost my best friend, only child, that lived with me for 16 years in a loving and active family home with many memories. She has thrown it all away, it's like it never happened. I have to wait until I am physically stronger before I can deal with this grief through counseling and maybe a group. I have started a slow process last summer. Does anyone understand when I say that there are emotional things I cannot deal with for months, years ,at a time because the illness is so severe? People have no idea how that pain can sit in your spirit for yrs and you feel powerless.
Even though I almost dread every day afraid of how sick I'll be, I now believe there is a divine plan in my life. This has given me hope through all this daily physical and mental anguish. Now my dear DS friends, go rest your eyes and reflect on what your own spirit tells you about your unique journey. If the Universe can make any good of all my suffering and loss than it surely can do it for you and everyone.
Replies
I hear you pouty and really relate so much to your struggle.I know what it\'s like to try to enjoy some event and been suffering the whole time you are there, because of the weakness and shaking in your body.I also know how difficult it is to cope with any extra emotional stress.It just collapses us.The grief you suffer from losing your daughter would be close to losing a loved one in death.Even though she is still alive she is totally absent from your life, so that is painfully sad for you.I feel very sorry for you.I understand your constant frustration with this illness.Sometimes I am guilty of feeling envy towards healthy energetic people.Today I started some new natural meds to repair mitochondria damage in the cells.I will keep you posted on any changes or positive results.Hang in there pouty, I am here for you and sending love.
Pouty, I think you are very courageous to try to attend events even when you feel sick. I find that hard to do most of the time, because pain and illness can be so distracting. I can only imagine the emotional pain your are experience from being separated from your daughter. Being the mother of two daughters, I know how difficult that must be for you. Praying you are able to find some peace through all that you have gone through.
I\'m a mama too, Pouty! I have one girl, and I raised her alone. We are joined at the hip. I cannot imagine being without her, although she did have a two year stint with drugs where I thought she might die. PTL she found her way back and that experience is now a part of her past.
You were very open and honest in this journal. I respect that so much in people. It\'s hard to admit that we feel angry towards healthy people. But it\'s ok. We are only human. We feel things just like everybody else...it\'s just that there isn\'t anything we can physically do to get back what we\'ve lost. It\'s so incredibly painful to look back at what we once were, what we once did......how much this illness takes.
It is comforting though, to have other friends with CFS, who totally understand your grief, your loss, you sadness, your depression, your pain.
My daughter is bi-polar. I wouldn\'t say she has depression anymore...she has more mania. But she\'s on a wonderful medication, a mood stabilizer that has helped her tremendously. She also has lupus. So lots of times, before I go feeling sorry for myself, I look at her, and muster up some strength and try not to complain. She is 33 and will never be able to have children! I pray that the relationship she is in right now will stay steady and loving for her. I wish so much for her to be happy....forever.
Thank you for your honesty again...like I said, it\'s hard to admit how much we hurt, and nobody really understands unless they live with this hideous disease!
God bless you!
Pouty, My heart goes out to you. I am so glad you were able to put so much into your journal & I hope it has helped you some. I understand the anger & I know that doesn\'t help you right now but I wanted you to know that I understand your grief & anger. It sounds like you were & are a very people person, it is a part of your life you do not want to give up & I don\'t blame you at all. Hang onto it with both hands. It is hard to do with this stupid illness. I pretty much have given up any social life at all. I haven\'t seen my best friend in about 6 months & miss her dearly. If you can still maintain a social life then you fight for it, be angry at this illness all you want to be & keep going. You are my inspiration to get out there & try harder. Thank you.
I am sorry to hear about your daughter, I am sure this must cause you so much pain. I can only imagine how you must want to find her & find some kind of solution to the problem. I also know how this illness stops us in our tracks. How I want to be more help to my daughter who is ill, my grandson who is a heart patient & my granddaughter who has seizures all of the time but I can not do all of the things I want to do, so much in my head that I think of doing but I fail miserably every time. Please don\'t let this illness take away who you are, find a balance if at all possible. If it takes venting here everyday, then vent here everyday. Many gentle hugs to you, Denise