Feeling Crazy
Feeling crazy lately. Remission for about (3 wks) ?. Very mixed emotions! So,happy to,be productive, see people ,go out, enjoy the sunshine and then a devastating depression that it will all end. And on top of that, just the emotional enjoyment can cause worse symptoms and long term relapse. How crazy is this???
Yes, I am happy, but I am resentful ,fearful, angry, confused all at the same time. Maybe I shouldn't get used to this---it's all going to disappear right? Possibly for months (in my case, years too!)
My enjoyment of activities causes my nervous system to go nuts. I get body vibrating, tremors, severe heat stroke with movement, exploding head feelings, a hyper manic feeling, upset stomach (which can lead to 2 months of extreme gastritis pain), nausea, head pain, mouth pain, mental confusion, outbursts of activity (or anger, not sure) wanting to throw things, hit things, etc...
And I've had some version of this for the last 40 years!!!HOLY SHIT!!!
Anyway, I want to thank all my DS supporters. I am very emotional tonight and at my wits end--so thank you for listening. The truth is that most people see me being very funny, chatty, hyper and generally good hearted. (They don't have to know the chaos that's going on inside me) And I'm aware that I have ALOT of blessings that make this crazy body worth coping with. I have a good marriage, decent finances, my own car and some good community groups and friends that are supportive.
It seems that alot of people notice there are things that seem to "happen" at the right time to lead us out of our despair. I am learning for myself that this must be a divine action, is too uncanny not to be.
The grief I feel about my estranged daughter does crop up too. Very painful. In her eyes I am a complete failure. She never wants to see me again. So many memories of learning about myself and life are wrapped up in mothering her. Impossible to not be reminded all the time. She is 36 now and the last time I knew where she was she was 19 years old. Why does God allow,this ?
I'm sure the future days will not be so painful. I pray that we all will feel the comfort of the divine mystery deep in our essence. It is a slow brewing mystery which reveals itself in subtle ways all the days of our life.
Yes, I am happy, but I am resentful ,fearful, angry, confused all at the same time. Maybe I shouldn't get used to this---it's all going to disappear right? Possibly for months (in my case, years too!)
My enjoyment of activities causes my nervous system to go nuts. I get body vibrating, tremors, severe heat stroke with movement, exploding head feelings, a hyper manic feeling, upset stomach (which can lead to 2 months of extreme gastritis pain), nausea, head pain, mouth pain, mental confusion, outbursts of activity (or anger, not sure) wanting to throw things, hit things, etc...
And I've had some version of this for the last 40 years!!!HOLY SHIT!!!
Anyway, I want to thank all my DS supporters. I am very emotional tonight and at my wits end--so thank you for listening. The truth is that most people see me being very funny, chatty, hyper and generally good hearted. (They don't have to know the chaos that's going on inside me) And I'm aware that I have ALOT of blessings that make this crazy body worth coping with. I have a good marriage, decent finances, my own car and some good community groups and friends that are supportive.
It seems that alot of people notice there are things that seem to "happen" at the right time to lead us out of our despair. I am learning for myself that this must be a divine action, is too uncanny not to be.
The grief I feel about my estranged daughter does crop up too. Very painful. In her eyes I am a complete failure. She never wants to see me again. So many memories of learning about myself and life are wrapped up in mothering her. Impossible to not be reminded all the time. She is 36 now and the last time I knew where she was she was 19 years old. Why does God allow,this ?
I'm sure the future days will not be so painful. I pray that we all will feel the comfort of the divine mystery deep in our essence. It is a slow brewing mystery which reveals itself in subtle ways all the days of our life.
Replies
I\'m a little confused, please forgive me Pouty.If you are in a remission , then how is it a remission when you are still suffering with so many disturbing symptoms as you have just explained.Sounds like you are very unwell still.I am sorry that you are in despair with so many mixed emotions.In regards to your daughter, have you thought about trying to track her down. It has been a very long time and maybe she has changed her attitude . There\'s always hope.You are indeed blessed Pouty that you have a husband and some social life despite your struggling health.I am really happy that you have been out and about and enjoying yourself.Just appreciate it while it is happening and try not to predict what may or may not change.You were asking why God allows the sad situation with your daughter.I believe that God is the supreme controller, ,however as individual spirit souls we have free choice.Your daughter has exercised her free choice and in doing so has obviously caused you deep pain.You would have nothing to lose in trying to find her again.Would you consider that? Anyway it is just a thought my friend.Take care now, heart hugs xo
Hi Pouty! 40 years of CFS? Yikes! I\'ve had this miserable \"Thing for 8 years now and experience very much the same things as you described above. Right now, I\'m five days into a crash with many of they symptoms you mentioned, mostly the gastritis. I take an herbal remedy for that, as my body won\'t tolerate drugs. I can\'t take Prilosec, or Nexium or any of the usual drugs, and my stomach pain becomes intense.
I always feel my crashes coming on. I slowly lose strength, all over.....then the next thing I know, I\'m pasty white with a very low blood pressure, mostly bound to my bed. I usually down for two weeks to a month. In my life right now, I very much need to function, but cannot! I have to get outside help (you know the situation with my husband). He would normally just pick up the slack when I have to be in bed. But he\'s sicker than I am right now, so we\'re quite the pathetic duo.
My enjoyment of activities makes my body go nuts too. It\'s our adrenalin, methinks. I can do a lot! I\'m able to drive, make meals, make beds, go to the store.......then as quickly as those few good weeks come. They go! I understand that the up and down times waver. That\'s how it is for all of us, I guess. Horrible illness this is. There\'s no predicting anything. I find myself reaching out more than ever now, because my caretaker is sick. It\'s a very lonely feeling. Thank God for my church. Thank God for God!!!
I know the emotional things get revved up when we\'re crashing, as well. I\'m so sorry about the situation with your daughter. You have no answers, or closure. I\'m sure it must be very difficult. There are ways to track a person down. I would guess that either you have already done that, or just want to wait to have her want to reconnect with you? In any case, I pray that you will get to see your child again.
Hang in there Pouty. We all go \"all over the place\" with this roller coaster life we lead. I guess we just never get used to it.
God bless you! xox
Try to enjoy the bouts of feeling well enought to participate in life, and when you go down try to think of it as your recharge time for the next good time. That\'s what I try to do and it helps me accept the down time better, knowing that I\'ll have a good day soon even though it feels like I\'ll never feel good again.
Sounds like you\'ve been doing too much if you\'re having all those symptoms during what you consider to be your remission.
And it IS funny how even good emotion can cause a reduction in your physical level if it\'s to an extreme degree, makes it hard to ever get excited about anything.
Don\'t be so hard on yourself Pouty.....you\'re doing the best you can.
Love and hugs,
Genie
Pouty, your mixed emotions are totally understandable to me. I somehow still manage to fool myself when I\'ve had a few good days that I have finally discovered the key to \"fixing\" myself, only to come back to the harsh reality of my situation in a very short time. You think I\'d learn by now that this is a very up and down(mostly down) illness. I am trying to enjoy things as they come, and if possible, avoid the feeling of dread for what the future days may hold. Somehow I always seem to get through those as well. I\'m so sorry about your daughter. I have two grown daughters and we\'ve had our issues as in any relationship, but I could not imagine what you are going through not being able to see your daughter for all these years.