Chronic Fatigue Syndrome Support Group
Chronic Fatigue Syndrome (ME/CFS) describes a sense of exhaustion and post-exertion malaise, even when you have gotten enough rest and sleep. The disease is characterized by six months of incapacitating fatigue experienced as profound exhaustion and extremely poor stamina, and problems with concentration and short-term memory. The cause is unknown, but it is a...
I've had this illness almost thirty years now. I've had all the normal symptoms throughout the years. But lately I've developed new symptoms that fit the description of heart arrhythmia. It just comes on suddenly at random times and it feels very scary and painful even. My heart rate speeds way up. It happened again today.
I do believe it's stress related and I'm sure just having this illness for so long is probably contributing too.
I feel heart broken on a daily basis and very alone. Ten years ago I gave birth to a baby girl and I was thrilled about that because I absolutely thought it was impossible for me to have a child after being sick for so long. But from day one it has been extremely hard raising her with very little outside support. My husband has helped a lot but then somewhere in there he began to spoil our daughter with all kinds of things and would let her watch non-stop tv despite me begging him to not let this be. I became mostly bedridden around that time and I think he thought that he had to entertain her with something but I would have much rather her use her imagination and she would have found things to do. My sister's son is an only child too and she hasn't been well at times and he has learned to entertain himself without the tv since they let him watch very little tv.
Later when my daughter turned around four, my husband started providing her with her own computer devices, non-stop computer games, etc. I also begged him to not do this as I could see her turning into a zombie with it all. My daughter is ten now, and completely addicted to the tv still as well as computer games, etc. She has to have a screen in front of her at all times or she starts to whine and act horrible. This is just one of my never ending battles and I feel like it's driving me insane. I love my daughter so much and feel like a failure because I don't know how to fix this situation. I have begged and begged and have gotten in many wars with my husband to change this situation, and it never changes, despite him constantly saying he will work on it. I've threatened at times to smash all the devices as I see that as a quick fix. But then I know he would just buy more. He has also spoiled our daughter so rotten with other things that she is appreciative of nothing. He doesn't even come to me about the Christmas gifts he is going to buy her and she knows I cannot go shopping at all and so she knows he buys it all and so it's all about what daddy got her on Christmas.
I've been asking my daughter for weeks if she was excited for Christmas, hoping she would be excited for the right reasons, but she kept saying no since she didn't think she was going to get as much this year, for some reason? Not a good attitude at all especially considering my husband had gone out and bought her the bike of her dreams, she just didn't know it yet.
My daughter also always wants to go to her friends house, who has more toys, video games, everything else under the sun, than she does. Her friend is spoiled too, never satisfied, and my daughter often comes home saying what else she wants because her friend has it. She was over at her house on Christmas eve all day, despite my wishes or anyone asking me if I wanted that. So I had a talk with my husband for over an hour telling him that she needs to be home more and not go over there so much. I miss her! I hardly ever get to spend any quality time with her. My husband seemed to understand. But then as my daughter and I were getting ready for bed last night, my daughter blurts out that daddy said she could go to her friends house again today, on Chrismas!, if I approved. My heart just sank when she said that. I spend most of my time completely alone, my husband and daughter are constantly leaving the house going all kinds of places without me, and I was hoping this could be a good family day for us.
I just feel so done. I'm just the family maid. I spend most of my time in bed, but when I do have an ounce on energy, I slave the rest of the time doing housework because my husband and daughter are extremely messy and it gets so bad daily no matter how hard I work to maintain it all. My daughter acts like I'm killing her when I ever ask her to help with the housework. I get tired of going through the wars, begging for help.
My husband does do a lot of good things, like getting all the groceries, working hard at his job to pay the bills, doing yardwork, etc. And he is also very good to spend time with our daughter and take her places. But I'm dying inside with how things are going, and have always been going. And my daughter, and even my husband at times, doesn't seem to have a clue what I could possibly be upset about most of the time.
And really, that's just one area that I'm drowning in. There is tons more. I had to cut off an abusive family member, my sister, many months ago. It has been so bad with her all my life and then it got to a whole new level and I had to cut her off to survive.
Well I could go on and on, couldn't we all. And I'm very sorry to be venting on Christmas. But I know many of you can certainly relate.
For many of us, and I dare say all, Christmas doesn't make all the pain in our lives magically disappear. :)
So to all those on this board that feel like they are in so much physical pain, emotional pain, spiritual pain, or whatever other kind of pain, that you feel like you will explode, know you are not alone.
And if anyone has had experience with the heart arrhythmia symptoms, I'd be interested in hearing about it. I'm too worn out to get to a doctor right now about that. I can't do drugs for it anyway. And I read that cayenne, hawthorn berry, motherwort, and relaxation techniques are good for that, so I plan on trying all that hopefully.
And one more thing, please no one feel pressured in anyway to respond to this. I wish so much I could respond more to the topics on this board, but most of the time I am way too exhausted. So I completely understand that. It took a lot out of me just writing all this out but it felt good to get it out at the same time. This all would have probably been better in the journal section but I'm not sure how the journal section works.
And by the way too, you all have helped me so much with all of the topics, good advice on how to deal with this illness, as well as the ventings that helped me not feel so alone. I appreciate you all!
I do believe it's stress related and I'm sure just having this illness for so long is probably contributing too.
I feel heart broken on a daily basis and very alone. Ten years ago I gave birth to a baby girl and I was thrilled about that because I absolutely thought it was impossible for me to have a child after being sick for so long. But from day one it has been extremely hard raising her with very little outside support. My husband has helped a lot but then somewhere in there he began to spoil our daughter with all kinds of things and would let her watch non-stop tv despite me begging him to not let this be. I became mostly bedridden around that time and I think he thought that he had to entertain her with something but I would have much rather her use her imagination and she would have found things to do. My sister's son is an only child too and she hasn't been well at times and he has learned to entertain himself without the tv since they let him watch very little tv.
Later when my daughter turned around four, my husband started providing her with her own computer devices, non-stop computer games, etc. I also begged him to not do this as I could see her turning into a zombie with it all. My daughter is ten now, and completely addicted to the tv still as well as computer games, etc. She has to have a screen in front of her at all times or she starts to whine and act horrible. This is just one of my never ending battles and I feel like it's driving me insane. I love my daughter so much and feel like a failure because I don't know how to fix this situation. I have begged and begged and have gotten in many wars with my husband to change this situation, and it never changes, despite him constantly saying he will work on it. I've threatened at times to smash all the devices as I see that as a quick fix. But then I know he would just buy more. He has also spoiled our daughter so rotten with other things that she is appreciative of nothing. He doesn't even come to me about the Christmas gifts he is going to buy her and she knows I cannot go shopping at all and so she knows he buys it all and so it's all about what daddy got her on Christmas.
I've been asking my daughter for weeks if she was excited for Christmas, hoping she would be excited for the right reasons, but she kept saying no since she didn't think she was going to get as much this year, for some reason? Not a good attitude at all especially considering my husband had gone out and bought her the bike of her dreams, she just didn't know it yet.
My daughter also always wants to go to her friends house, who has more toys, video games, everything else under the sun, than she does. Her friend is spoiled too, never satisfied, and my daughter often comes home saying what else she wants because her friend has it. She was over at her house on Christmas eve all day, despite my wishes or anyone asking me if I wanted that. So I had a talk with my husband for over an hour telling him that she needs to be home more and not go over there so much. I miss her! I hardly ever get to spend any quality time with her. My husband seemed to understand. But then as my daughter and I were getting ready for bed last night, my daughter blurts out that daddy said she could go to her friends house again today, on Chrismas!, if I approved. My heart just sank when she said that. I spend most of my time completely alone, my husband and daughter are constantly leaving the house going all kinds of places without me, and I was hoping this could be a good family day for us.
I just feel so done. I'm just the family maid. I spend most of my time in bed, but when I do have an ounce on energy, I slave the rest of the time doing housework because my husband and daughter are extremely messy and it gets so bad daily no matter how hard I work to maintain it all. My daughter acts like I'm killing her when I ever ask her to help with the housework. I get tired of going through the wars, begging for help.
My husband does do a lot of good things, like getting all the groceries, working hard at his job to pay the bills, doing yardwork, etc. And he is also very good to spend time with our daughter and take her places. But I'm dying inside with how things are going, and have always been going. And my daughter, and even my husband at times, doesn't seem to have a clue what I could possibly be upset about most of the time.
And really, that's just one area that I'm drowning in. There is tons more. I had to cut off an abusive family member, my sister, many months ago. It has been so bad with her all my life and then it got to a whole new level and I had to cut her off to survive.
Well I could go on and on, couldn't we all. And I'm very sorry to be venting on Christmas. But I know many of you can certainly relate.
For many of us, and I dare say all, Christmas doesn't make all the pain in our lives magically disappear. :)
So to all those on this board that feel like they are in so much physical pain, emotional pain, spiritual pain, or whatever other kind of pain, that you feel like you will explode, know you are not alone.
And if anyone has had experience with the heart arrhythmia symptoms, I'd be interested in hearing about it. I'm too worn out to get to a doctor right now about that. I can't do drugs for it anyway. And I read that cayenne, hawthorn berry, motherwort, and relaxation techniques are good for that, so I plan on trying all that hopefully.
And one more thing, please no one feel pressured in anyway to respond to this. I wish so much I could respond more to the topics on this board, but most of the time I am way too exhausted. So I completely understand that. It took a lot out of me just writing all this out but it felt good to get it out at the same time. This all would have probably been better in the journal section but I'm not sure how the journal section works.
And by the way too, you all have helped me so much with all of the topics, good advice on how to deal with this illness, as well as the ventings that helped me not feel so alone. I appreciate you all!
https://www.youtube.com/watch?v=qunmtzN8pcg
I have no advice to help you through this...all I can offer is validation of your grievances. You're totally stuck in this situation simply because you have no way to earn a living. I know that feeling well, I'm living on a very small income myself and I get no help whatsoever from my extended family or anyone in my community.
You're right on target about your husband's behavior, but it's all too common these days. He's totally abandoned his responsibility as a father and he's treating his daughter like a pet instead of a human being. Being a parent carries with it responsibilities...he's obviously ignoring those.
Our modern world is so focused on material things that no one would fault him for providing those for his daughter no matter how badly he neglects his role as parent in guiding her. Giving a child mountains of toys and letting them get addicted to electronic media is neglect, pure and simple. It's easier to behave that way than it is to be a parent to a child.
Given the seriousness of your illness, I can't see how you can do anything to remedy this situation.
Cardiac symptoms are very common with ME/CFS. Sudden rapid heartbeat, irregular rhythms, unexplained strong beats...they're all very alarming, but don't seem to indicate anything functionally wrong with the heart. For the past few days I've been getting a lot of strong beats, almost painful...just one or two, then I'm fine.
I've had those off and on for many years now and I'm still around, so try not to worry.
I would urge you to see a doctor about your increase in heart rate. I myself have just had several very bad episodes of increased heart rate of 150 bpm and above, only discovered after collapsing after a week of feeling extremely unwell. I have had a couple of ECG's which indicate possible SVT ( supra ventricular tachycardia ) but these symptoms could also indicate AF ( Atrial fibrillation ). An ECG during an episode would be able to better determine what is going on, most likely a 24 hour holter monitor. I have just started medication of beta blockers to see if they help until I get an appointment to see a cardiologist.
Please get yourself checked out.
Jennifer, first of all, let me say I'm so sorry you are going through the heart stuff too. I've never had anything like this and it feels so scary. My heart has always ran on the very slow side, which is bad too and scary too in how weak I get when it really gets low, but this is one of the scariest thing I've ever been through as far as symptoms go. It does feel like I might die when it happens. I'm sure you feel that way too. I was reading an article that said when the heart rate goes up like that, the brain is hardwired to go into panic mode alerting a life threatening situation.
I have read too, like Richie said, that it doesn't always mean that anything real serious is going on. And it's very common. At the same time, I've never had this before after almost thirty years with CFS, so I am wondering what's going on new to cause this? Also I read that 400,000 people do die every year with heart arrhythmias. I know it would be a good idea to see a doctor, but it's extremely hard for me to do that right now for a long list of reasons, but maybe I can figure out a way to go anyway. I've been taking lots of cayenne and for several days, I went without any sudden increases in heart rate, but then I went through some extreme stress, and it all started up again. I will be interested to see what your test results show. I hope we can both get this under control.
Richie, thank you so much for your reply. I do feel so stuck and helpless in this situation. My dad lives down the road from me but the few times I've packed my stuff up and headed to his house, he has looked at me like I have ten heads. He loves me, but he just does not understand how difficult this illness is and that I desperately need peace at times to get stronger. I need to get away sometimes and to show my husband and daughter that I'm serious and not coming back if things don't change and they don't treat me better. But my dad just doesn't get that. He thinks that means I'm leaving for good, since my mom left him. And he knows I can't support myself. My mom is supportive, she has CFS too, but she lives in government housing and it's way too small for me to stay with her, and lately, she's been really hard to talk to too. My mom has CFS but she is not as sick as me, and has always been able to do way more than me. So she still doesn't quite understand my situation and why I can't get things more in control. My sister, the one I had to cut off months ago, was seeing that my husband was being very wrong in how he was doing things, but her answer was to call him up and scream at him and tell him how horrible he was, which just made things worse, while at the same time writing me daily emails telling me how perfect her marriage was and calling me passive for not fixing my problems and saying I was clueless as to what was going on. All extremely hurtful when I have put up a fight, for years and years, which is no doubt why I'm in as bad of shape as I am.
I wish so bad people, especially our family and friends, could know how extremely difficult it is for all of us just to get out of bed everyday and face this illness alone, not counting all the other endless problems, and most of us with very little support. My aunt has been going through breast cancer over the last year and the support and encouragement she gets boggles my mind. I couldn't imagine having people care like that and have daily encouragement pouring in like she does. And I'm so glad she is getting that. It has giving her strength to fight this hard battle she is going through. But we need it too especially when most of us have been going through this for years and years and from my observation, we feel so much worse than most with cancer and can't do anywhere near what they are able to do. My aunt has worked full-time while having cancer, as well as doing cancer walks (I love what you say about that, how that doesn't work for this illness :)) and she does all kinds of other activities, and I can't barely leave the house.
I've read so many of your posts Richie, and it makes me sick how you've been treated by your friends and family. It's completely evil. What kills me with so many of you on here too, is how successful many of you were before you got struck with this illness, the schooling you were doing, etc. showing without a doubt that you were people that had great initiative in life. How in the world do people just think you woke up one day, and decided to just give all that up and be lazy. It makes no sense whatsoever. And if they would just talk to you and really listen, they would know that was certainly not the case. And I know it hurts for people to accuse or imply you are a junkie. I've had lots of rumors go around that I'm anorexic or bulimic and that's what really going on. And those are serious diseases that I have the up most sympathy for, but that's just not what I have. Unlike many of you though that lived your potential for a while and showed everyone that, I got sick when I was ten years old, and so people never saw anything much but what they thought was laziness, except I did granduate at the top of my class with great effort, but then I got even sicker, and things went down from there. I had to drop out of college by year two.
There is just so much injustice with this illness, it's unreal!
Thank you again for your reply. Sometimes I just think I'm going crazy and maybe I'm the one that's wrong, but it's good to hear some reassurances that I'm right about this issue, and probably lots of other issues. :)
You're right to be concerned about the amount of time your daughter is spending being "entertained." There absolutely needs to be some boundaries in place here. How would you say your communication is with your husband? Does he know how you feel about this? Have you told him and he just doesn't care? This is important because whatever parameters you guys decide to put into place, it will be up to him to enforce them.
There's a really good book out by Dr. Arch Hart called "Protecting Your Family From the Digital Invasion." I heard about it through Focus on the Family. You might want to check it out. It sounds like your husband might need some convincing to see how important this is. Good luck to you all!
#2015MyYearForChange
#Livn'ItUpInCO
Thank you for the suggestion on that book. That sounds good!
Please forgive the brevity of this answer...we're so busy and tired but I wanted to answer this.
About your Afib - I am not aware of herbals that can be used without a naturopath and cardiologist on board. I did want to mention that my husband has Afib and it does get worse with certain foods and with stress. For him it's caffeine (of course) and too much sugar that causes an increase in symptoms. I have heard from several folks that the paleo diet is the best for Afib and that while it can't cure it, it can help keep your vessels as clear as possible.
As for your daughter - I think I would have said a gentle "no" to her going to her friends house. Christmas is for family and that's it. It's too late for this year but you can start making changes now in a way. Here's my thought. If she is truly finding computers to be her "thing" and as there is no way for you to channel her into something like karate, or girl scouts or something because you just don't (presumably) have the energy to do that..then how about setting limits on computer time UNLESS she is learning something on there. There are sites for learning all over and she can come sit next to you and learn for 15 min and then be allowed to play for the rest of her computer hour. Then in a week it's 30 of learning and 30 of play. Also, this is a perfect time to get her into writing code. My grandson is severely limited in his "screen time" by his parents ( they are allowed 30 min per school day and 1 hr on the weekends. but if he is working on writing a program he can have an extra hour a day. (His Dad is a programmer and at 8 he has already written a simple program). I will see if I can ask my son in law for a free site that teaches code. If she's going to be glued to the screen she might as well be moving towards making a living at it someday!
As far as time with her and housework.... if you can sit down with her and explain the spoon theory and tell her you will have more time to spend with her if someone helps do cleanup then perhaps she will understand. She's certainly old enough to be doing laundry, load dishes, and make beds. It's pretty easy to teach her to do laundry and if she balks, then she can run out of clothes and then she's going to do her laundry! It will help of course if hubby is on board but you are her parent as well and you have 1/2 the say. See if he will get on board with the online learning. If she is not gently reigned in soon, tell him this mom of two daughters says he will not be happy with what he deals with when she is an out of control teen!
Gotta go, pooped! Be well
Parent is a noun, not a verb. Modern writers have tried to make it into a verb and this has fostered some very bad attitudes toward childrearing. When you have a child, you ARE a parent...period, end of sentence. It's not something you do like playing tennis.
I think you're right on target about your daughter...don't give up on that. Find a way somehow. If a child gets the idea that his or her parents don't really care...things can really go downhill fast, believe me. Words don't mean anything, you have to BE a parent through actions.
I am seeing for sure that the heart arrhythmia symptoms I'm having are stress related but there may be other things contributing too. I do eat a really strict diet. I have to to keep down symptoms, and it's not total paleo, but similar. The cayenne I'm taking seems to be helping a lot unless I get under huge stress. I'm also trying to do more rebounding with the mini-trampoline I have, hoping that will help too.
You are right about giving my daughter a gentle no on going to her friends house on Christmas. I did say no, but I'm not sure how gentle it was. :(
It's funny that you mentioned Karate and girl scouts, because she is doing both. The girl scouts she has been doing a while, but she just started the karate recently and I am hopeful about it because she seems really excited about it and it's something else to help get her off the screens so much.
I am going to really be pressuring my husband about limiting her time. I have been already, but I will continue to until it changes. He has to set the controls because he has this complex computer system set up at our house since he works from home and I have no idea how to mess with any of that at all.
I have thought before that she could end up doing a job in the computer field. My husband's job is in computers and my daughter has a mind and personality a lot like his. She's already learned way beyond what I can comprehend in the computer world. But you are right in that she needs to be learning instead of playing all the time. My husband did set up a computer class for her a while back, at her request actually, and he invited a lot of her friends to join and other kids, and then when the classes actually started, she showed no interest, so that was upsetting to my husband. But I think that was just the fruit of all the non-stop entertainment, etc.
I do make my daughter to laundry. I discovered she was very good at that one time, and I told her that was her job from then on, at least all the folding. But she puts up more of a war with other things I ask her to help with, so I need to get that changed. I do need to explain the spoon theory to her too.
Yes, unless we don't get things changed around here, I'm afraid we haven't seen nothing yet when the teenage years hit. And I keep telling my husband this too.
Thanks again for your reply, especially while pooped! :)
I do know my husband really loves our daughter. Yes, he is really hurting her with these issues, but I think it has to do more with him being too much of a kid himself than lack of care. I know some parents will give their kids video games, etc. because they want them out of their hair. My husband is different in that he wants to be right in there playing with her. I've often thought I'm dealing with two kids here, at least in some ways. And there is nothing wrong with a dad playing with his daughter, in fact that is a great thing and kids need more of that, but it's the excessiveness of the computer games, spoiling her too much, not disciplining her enough, that's the problem I think. And I know he is seeing it, but old habits die hard. And honestly too, I wonder if they don't both have a lot of fatigue themselves. My husband runs circles around me but he still seems really tired a lot for his age. My daughter shows lots of signs of illness as well. Are they doing this because it's easier to do this all day than other things? Still regardless, it's not healthy, it's not good, and it needs to change.
As to your heartbrokenness, I feel you. It's horrible to be limited my your physical circumstances. I have a friend who works for hospice and she said that she tells her patients that there is always something they can do to make their lives better. Even if they are bedridden, they can pray or they can forgive someone. Even still, there is a lot you can't control. It's hard to accept those things we can't change. Many blessings and light to you.
But I've been taking cayenne pepper everyday and that seems to be helping. At least there has been no more scary episodes since I started taking it.
Yes, you are right, there are always ways we can improve our lives no matter what state we are in. Even though I've had CFS for decades, I'm still having to learn how to be more at peace with my circumstances and accept the things I can't change as you said.
Always got to remember the classic prayer :):
"God, grant me the serenity to accept the things I cannot change,
The courage to change the things I can,
And the wisdom to know the difference."