So you say you know how I feel, huh?

Discussion in 'Fibromyalgia Main Forum' started by lvjesus, Aug 30, 2006.

  1. lvjesus

    lvjesus Member

    This icon is how I feel. Hubby says, so you are sick too? Then he says how tired he is and how he got up tired, etc. which I DO NOT DOUBT one bit because he has been tired alot lately too (I am worried he might have sleep apnea), but he is out in the shed working on the boat my Dad gave him and trust me, if he felt like me, he WOULD NOT be in the shed, he would be on the couch.

    Just a small vent, but don't say you know how I feel if you don't. He has had some seizures and if you know anything about them, you are WIPED OUT after. The other day I was WIPED OUT. I said you remember how you feel after a seizure? He said yes, I said, that is how I feel.

    He said me too, but then said weeeelll, not quite that bad. Sorry men, but if he had this DD he would be down for the count and not pushing through housework etc.

    But I must say he treats me pretty well, considering it must get pretty tiresome to have a mate who never feels completely well, but it ain't that great from this side of the fence neither!!!

  2. smalone

    smalone New Member

    Sometimes I get jealous of my husband because he can do so much that I can't. If he gets sick he whines around complaining about how bad he feels. I don't give much sympathy because I'm thinking I live every day like I have the flu!


    say "well, h*ll honey, I feel all these symptoms too, tired, cant think straight..." Yes but yours is different than mine, they don't understand that this isn't something that you can put aside and go ahead get up and move and just start'll feel better if you get up and move more. While yes that is true that exercise is good for fibro, only we can only exercise very softly and lightly, or we feel terrible the next day.

    Like your hubby and mine they may be tired and exhausted too from there jobs they can still go "play" in the shed and we can't, no matter how much we would like too!!

  4. MamaDove

    MamaDove New Member

    I am in a fog right now but wanted to respond to say that I saw your post...

    I have had more than my share of dealing with a spouse and 'son' with epilepsy...To say it's devastating to the life of the sufferer as well as the ones closest, for me is an understatement...

    My life has been overwhelmed at times by epilepsy...Anxiety and depression due to aloved ones affliction such as this is common for me but something I have to deal with...

    My husband has grand mals and each one takes a bit more of who he once was...He has always tried to fight back after each one but TIRED, EXHAUSTED, MENTALLY UNABLE TO COMREHEND doesn't begin to describe what he goes through...

    I would never ever begin to compare my problems which are a laundry list, to his...I have tried to research on how THEY feel before, during and after and esp. how they mentally cope with just the anxiety they must have awaiting the next, possibly LAST seizure...Noone but the sufferer knows how they feel...Just like us, unless you have FMS,CFIDS,RA,OA,blah, blah, blah, how could you...

    BUT NEVER would I begin to compare him to me...His brain is fried long after and some things he never gains back even having a support system like he does in me...There are times he yawns ALL DAY, even after sleeping ALL NITE...He is depressed but won't admit it, he is anxious but won't admit that either...He is tired of living with the 'monster' and for the most part so am I...

    For 21 years, I have begged the man upstairs to give me anything other than epilepsy to deal with...This illness, that I don't even have, but have to watch the two loves of my life go through, SUCKS!!!!!!

    Try to get to the root of your husbands problems...If he is anything like my husband he is too proud and even too ashamed to talk about it...The day I witnessed his first one changed my life forever...I dread the next one and the one after that...I have heard all the family and friends and docs advice that you can't live your life around the epilepsy...BULL!!! My loved ones are suffering from a nightmare, or so it seems, and my piddly ailments don't compare...

    Reminds me of something someone once told me...I CRIED WHEN I HAD NO SHOES until I MET A MAN WITH NO FEET...Just no comparison...

    Also try not to complain about your tiredness or pain in front of him so much...We don't realize how it hurts the spouse deep down inside...It may just be pulling him down more than he needs...I have not gotten it right as of today so I am not hear telling you I know what to do but I am hear to tell you I understand completely...

    I have said this before in some posts...I did not know my husband had seizures when I met him and fell in love with him...He didn't share the good news, probably fearing I would walk away...I didn't! Then after 7 years together, a gorgeous wedding and honeymoon, a year later my life went kablooey...Then we completed our family of five in 1998 with our beautiful boy Moose (yes he's a dog, in my profile), he had his first seizure on his 2nd birthday and that day I begged for it all to end...

    Epilepsy has taken a big part of me away, apparently it's not coming back either, I've tried...But I love deeper than most and there isn't a selfish bone in my body so I suffered along with them...Of course, I am ruining my health further from the stress of the worry BUT noone else will...That's true love and I'll keep it, seizures and all.

    I know it's long and I know I strayed from the initial premise of what I wanted to say but therein lies part of my illnesses...I know what I want to say, but it never comes out quick and simple...It's long and complex...YIKES!!!

    Just try and understand more of what he goes through is all I'm saying...I have found that it puts things in perspective

    Peaceful days ahead~Alicia
  5. code34me

    code34me New Member

    My husband said the other day he would trade me places anytime! I just got real quiet after that. He does work hard and is a real go getter. He leaves the house at 4:00am and gets home at 7:30pm from work. He is a prop-maker for the studios has been for 17 years.

    I on the other hand have FM and CFS. I am 40 with a 4 year old son and a 14 year old daughter. I take care of everything that has to do with the house and children. I cant rest when I need to and go into flares alot.

    It is so hard to feel this way and have the responsibility that I have. I did not like it at all when he said that. It made me very sad and angry at the same time. I just think it was not a very nice thing to say to me.

    So yes I understand this topic very well!!!

    Take care of you! Codey
  6. lvjesus

    lvjesus Member

    he does not have epilepsy, but a congenital brain defect that caused his seizures. He has only had 3 or 4 and would not have had the last 2 had he only taken his Dilantin like he is supposed to.

    I sure know what you mean about the first one though. It took 10 years off my life. He has his in his sleep and the first time I thought it was a heart attack and then of course when he bit his tongue and the blood came out of his mouth just as he went still, I thought he was dead.

    I thought he had a heart attack and only when I was on the phone with the 911 operator and she had me feel his pulse did I realize what had happened.

    Thankfully we found out what caused it and he is on meds.

    Prayers for you,
  7. kjfms

    kjfms Member

    Sorry you are having a rough time and hope it gets better soon and I hope your DH does not have sleep apnea. I am also glad he treats you pretty well. Sounds like you have a pretty normal (if there is such a thing) relationship.

    I just want to toss out a thought which may or may not apply to your DH. I have been with my LIL (live in love) for 22 years (23 next month) and know that he really doesn't like to talk about me being sick because it scares him.

    A lot of men, having been raised with the notion, do not like to show fear and let's face it-when the woman they love is sick it must be very scary for them.

    I know that I would be scared to death if my LIL were to become ill.

    A lot of people's, not just men, fear comes through as anger also and this makes for a difficult situation.

    For example: Other than this DD I have chronic migraines and have had co-workers comment that if they have a migraine there is no way they can work.

    I have had chronic migraines for so many years that they are a normal part of my life and I have just learned to function with them on medication of course.

    Sorry I am rattling on and on but my point is everyone is different and we all deal in our own way.

    Maybe you DH working on his boat is like a therapy to him and is helping in some way deal with what life has thrown you both.

    Just a thought. I hope I haven't offended you because that was not my intention. I was just trying to offer another viewpoint.

    I wish you the best and take care of you,

    Karen :)

    [This Message was Edited on 09/01/2006]
  8. KelB

    KelB New Member

    I have temporal lobe epilepsy (hallucinations and absences, rather than physical fits), although thankfully it's been dormant for many years now.

    I've often said that the nearest I can get to describing the CFS "brain fog", is the after-effects of a fit. That confusion, loss of self, inability to think straight...

    It really does feel like the same kind of thing, even if the CFS brain fog is the lesser of the two. For example, with CFS I struggle to find words, get words muddled up and find talking and listening very difficult. After a fit, I could have full-on aphasia and just not be able to speak or understand English for a while.
  9. petesdragon

    petesdragon New Member

    Please don't call seizures fits. It is an old-fashioned term that recalls when people thought evil spirits caused epilepsy. I have a cousin who has had uncontrolable seizures every day, all day, since puberty. Her life has been so limited by her seizures she even wanted to have half her brain removed but the seizures are all over her brain. She has had a Vagus Nerve Stimulator implanted and it seems to help her a lot. Just a thought.
  10. KelB

    KelB New Member

    Sorry to cause you offence Petesdragon, but I reserve the right to refer to my own disability as I please.

    In my experience, the terminology used does not alter people's perception of a condition. Its how openly we discuss it and the way we talk about it. Raising the spectre of outdated attitudes, merely serves to perpetuate them.

    I'm sorry that your relative had such a tough run with epilepsy. By contrast, my grandmother had it in her teens and lived a perfectly normal life, with sympathetic and appropriate medical treatment.

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