Horrible Day

Discussion in 'Chit Chat' started by momof471, Jun 6, 2008.

  1. momof471

    momof471 New Member

    Today wwas absolutely horrible! We have been having a heat wave in the lovely state of NC and it does not work well with me.

    This dramatically increases my pain. I had the mother of all headaches for two days now and had to attend activities for my children at school both days. It has been an absolute nightmare.

    If I can do nothing else I want to be there for my kids especially in their important moments. My fibro has affected our lives tremendously, but we have a short time on this earth and I don't want this monster of a syndrome to be the biggest memory of me.

    I am so wiped out right now but can't sleep. There is a thread on the fibro board that really touched a sore spot with me, about people judging others who say they have this illness, about what they are able to do and so forth and they must not have this.

    I do what needs to be done, but know one knows how much pain I'm in or what a challenge it is to do what little I do. No one know what happpens to me when I'm behind closed doors, in my house and the bad crashes I go through when I am done.

    Sorry to dump all this depressing mess here, but I feel as if other's will understand.

    God Bless
  2. sisland

    sisland New Member

    Yes i understand Completley! I think we all find ourselves in these painful situations! Life has a way of happening to us no matter how we feel or are able to do!

    That might be why we isolate ourselves from outside activities and other people! (At least i do),,,,,I can totaly relate to everything you have written!!.,,,,,,,

    These painful energy-zapping DD's are so hard to deal with!,,,,,,,It Seems like we are in pain no matter what!,,,rest when you can!,,,,Hugs!,,,Sis
  3. Cromwell

    Cromwell New Member


    I think this judging of others is awful too. I do a lot and many of my buddies here do also, but not from CHOICE! Hafta force myself to override the pain to get it done, and so do others. Many people do not have the priviledge of having someone to help them out. In our house with three disabled people we just try and do what we can and lean on one another. Pain is still pain whether you work thru it or not. There are days when I can only use my wrists to pick up a cup my hands are so stiff, but I still hafta cook the meals. So I agree, no judging. Ignore those who do.

    Just feel better and stay in the cool. We have a heat wave in upstate NY too yesterday and today.........

    Love Annie
  4. momof471

    momof471 New Member

    Thank you very much for your kind replies!

    I only got 3 hours sleep last night, but my headache is more manageable this morning, thank goodness!

    I know what you mean by isolating yourself, I do that also, I don't want people to see me at my worst, that increases my anxiety and depression.

    When I'm out and about, no matter how I feel, I paste that smile on my face and don't complain. People don't want to hear it anyway.

    I do have a very supportive husband and great kids and they are my soft spot to land...I am blessed!

    It is hitting 100 here again for the next few days. I will be staying out of it for sure and catching up on some rest!

    God Bless
  5. Granniluvsu

    Granniluvsu Well-Known Member

    Believe me I do understand many of us do here. Yep, and we also do alot of faking when around people.. I do that allot !! You are very correct when you sayno one wants to hear complaining plus it doesnt help anyway.
    I've been doing it for almost 25 years - horrible when noo one really has a clue. I was just dxed about close to 2 years ago I guess, even though I knew what it was other than the CFMP also. Someone clued me to that on another FM board.

    I hope you get to feeling better soon. When I first was hit with these dd's I had 5 children home and was doing home child care, and had a FIL with alzheimers/dementia living with us too. Talk about stress -0 ugh. I also all the time have like a pressure in the back of my head all the time and the chronic myofascial pain. It is not fun.

    God bless you and hope your terrible headaches go away VERY soon. I feel your pain too, sweetie.


    [This Message was Edited on 06/07/2008]
  6. poets

    poets Member

    Hi mom,
    I'm in the hot section too. I'm just trying to stay inside. I honestly can relate to you so well.

    I'm through with faking smiles for people. I just don't have the energy to even do that anymore. I don't have any school children to work with as mine are older, but I've been through that too.

    My problem is that my mother, who is 79, is rather demanding. If I don't answer right away when she calls or if I'm not around to answer the phone I have to tell her where and why. She gets very adamant. She wants nothing to do with me unless she needs something. I love her, but I get so weary sometimes.

    But somehow we all get through. Sometimes better than others, but we get there. Let's just keep holding on to each other. I'm so grateful for this message board........

  7. PVLady

    PVLady New Member

    I cannot believe someone has posted again being judgemental of others they think may not have fibro. It just the worst thing for anyone here who knows what fibro is, to look at anyone else and judge, or post here about it.

    Whenever I see one of these posts I am so upset and I want to write back and tell the person off which I cannot do.

    Every so often this seems to pop up. I am sorry you had to see it. I wish the moderators would remove those posts.

    I read the post - it sounds so judgemental and I was also upset and wrote back to her. I doubt the person will even understand. Some people go through this world with no compassion or empathy for others until something happens to them. -
    [This Message was Edited on 06/08/2008]
  8. momof471

    momof471 New Member

    Thank you for your heartfelt replies! I'm feeling a little better today, I stayed out of the heat during the day and my family and I went for icecream yesterday evening when it was cooling down and the sun wasn't so intense. It was nice.

    Its hard when the changes it weather hit and you also have a lot that needs to be done at the same time. It frustrating but I know you both understand.

    Hope you have a good day!

    God Bless
  9. momof471

    momof471 New Member

    I read your post on the other thread before I saw this one and I was SO happy to know that someone else had my point of view!

    Thank you for seeing my post here and then going over there and backing me up! It was vvery disturbing when I'd had such a bad week, but had to continue to do what needed to be done anyway and it really hit a raw nerve with me.

    Now, I can look at this and know its not likely that anyone can change the view of that person. I know that kind of hostility though can fuel the pain though and its ashame to do that to yourself.

    I can't tell you how much better your post's have made me feel!

    God BLess
  10. PVLady

    PVLady New Member

    There have been other posts in the past with the same statements. It absolutely makes me sick. I know there are people in this world who look down on others and have no compassion, but seeing it up front and close is upsetting.

    I have tried to think why I have such a bad reaction, because it is so deep inside me that feels so offended by this type of post.

    The amazing thing is, many people who post stuff like this also proclaim themselves to be religious. They mention God, church, etc. It certainly makes me wonder.

    I have a aunt who is 80 now. I like to call her but she also upsets me. I finally realized why, she is a little like these people who post being judgemental. She is so snobbish.

    The post we are discussing was particularly upsetting because of using the term "these people". I am feeling, our entire board is composed of what she may consider to be "these people".

    She never came back and responded. I was hoping she would remove the post entirely but no luck.
  11. Granniluvsu

    Granniluvsu Well-Known Member

    Well, my curiousity got the best of me and I checked out what I think was the post(s) that you are talking about. Just to let you know that I agree completely with both of you and most of this board. I know and knew that many times since I was not complaining, that much and did everythig that I had to do for years with my kids, people would think I was faking anyway. So, I tried not to mention it much or complain. I do so a bit more now and let them think what they want.

    We all do what we HAVE to do and also do some faking to but when I say (faking)I means we are trying to put on a good face to most people and try not to complain as we go about our activities.

    Since coming to this board and speaking to others I see how lucky I am and how DIFFERENT we ALL are. Just because one day someone is not doing much and other days are doing the chores that need to do and no one else is going to , or you have to pay someone else to do them, doesn't mean these are people faking their symptoms for SS Benefits.

    Luckily, I am older and have my reg. SS and my husbands retirement and pension. I have been dealing with pain for about 25 yrs plus other symptoms with not very much complaining either. I wake up tired but probably do not have full blown CFS. I think, for me my pain just wears me down. I try not to take much in the way of pain meds, just at night.

    Since I was also dxed a couple of years ago I have been more open about my disease and of course people think I look so good (so, what else is new)??. My parents both looked good when they aged . Luckily, I may have their genetic young looks. My mom came from very hearty hard working stock, originally from what is now the Czech Rep and was orphaned at a young age.. She never complained about anything and had arthritis to when they figured children didn;t have arthritis. So she worked hard on the farm and did what she had to do, pain and all. She was never a complainer at home either.

    When I read the other posts it saddened me but I was also so tired last night I wasn't going to respond but not sure I want to go there with that person anyway. There will always be doubters, no matter what, which is VERY sad, especially with some sufferers who are applying for their disability that they desperately need..

    We just need to remember as I am sure YOU both do, that we are all VERY different and these DD's do their thing differently on each of us. One day you may feel not to bad and other days horrible and can't move or are debilitated with fatigue and or pain also. I have pain all the time but some days do feel worse but not as badly as others I am sure. I thank God that I can get up and do the things around here that I need to do. I hope one day to get someone to help me clean occasionally but I am to cheap and so havent done so yet (-: !!

    Sorry, this is so long. I just wanted to let you know that I do agree with you and everything you said. When people start on their rants most of the time now, on the board, I look in the other direction . I hate to get caught in the middle of a tiraid (sp).I have responded to some but many believe what they are going to believe and that is it.

    Mom - I hope you are feeling alittle better and so sorry you are in such a mess now. Hope all goes well for you. Iknow you can't really talk abou it.

    So sorry so long. Also sorry for the rambling on. Hope it made some sense to you (-: !!

    God bless and hugs to you both,


  12. momof471

    momof471 New Member

    I completely agree that no one should be lumped in with 'these people'. We are all different and deserve to be treated as such. Not to mention that this illness effects us in so many different ways!

    On top of that there are the different stages of life we are in, contributing illnesses and other factor's that make us all different.

    My doctor's let me know I am not supposed to crawl in a hole and stay there. I am supposed to pace myself, good days I do more, bad days less.

    We are all still human beings that deserve to try and make our lives better.

    Thanks for being supportive, I'm not quite as angry now, just saddened for the narrow mindedness of this person.

    God Bless
  13. Cromwell

    Cromwell New Member

    Thanks PVLady for telling that person off. No idea who it is. Being judgemental is not what this board is about and I would sure tell the moderators about it.

    I was just watching something on TV where a man rides a modified Segway(that has a seat that is like a bar stool) and when he is on it he says he looks like everyone else, but off it he cannot even stand let alone walk. I wonder how many people would know that?

    Hope you are doing better.

    Love Annie
  14. lilaclover30

    lilaclover30 New Member

    I didn't read the post but i agree with all of you other dear people."
    Judge no lest you be judged."

    I get judged in my own church. i had a friend for years and she decided that she didn't want to be around older and sick people. I don't complain. You can just see it in my walk. My lower back pain is getting the best of me - plus my tailbone feels like there is glass in there! I try to stand the best I can and have taken to using a cane in church, etc.

    I do have friends thast afre super marvelous to me - that takes away the hurt of the others.

    Please don't take to heart what others to do judgfe you here on the board. they don't know you shouldn't judge. ll of us are different and handle pain differently.

    My love and blessings to you.


    [This Message was Edited on 06/09/2008]
  15. momof471

    momof471 New Member

    Thank you for posting! All of these supportive responses. I have a strong tendency to second guess myself and thanks to all of you all, I don't feel that way in this situation!

    I'd really had a bad few days and I wondered if I'd over-reacted.

    I've been pacing myself and trying to stay out of the heat as much as possible. My 11 year old had her 5th grade graduation today and I had to be out during the hottest part of the day.

    This has resulted in extreme fatigue and above average headache for me. She did so well though and I'm proud of her and that makes it all worth it!

    Tomorrow is actually the girls' last day of school, so I have the day to relax and recuperate. YAY!

    Sometimes I simply don't have the energy to post, as many of us, but it is so nice to know the support is here when we feel as if no one else understands!

    God BLess
  16. lilaclover30

    lilaclover30 New Member

    I jusst wish this "former" friend could try8 to walk in myb shoes for a day! You would hear more screaming and moaning from her. I have seen hefr with a stiff neck and I know her reaction to pain and fatigue (just saw the latter today at coffee)

    We all handle it the best we can and oh,-------how very8 much this board helps me even though I can't always get here for a few days or weekis at a time.

    Isn't it a shame others feel so (I'll call it snobbish) when they ao self-secure and healthy.

    Love you all,

  17. momof471

    momof471 New Member

    for responding. I'm sort of glad the pain does not show, at least to my kids. I don't want to be pitied, but then I don't want to be told I look fine and must be better either.

    Its a fine line.

    Today was my girls' first day of summer break. I got up, we ran our errands, I made them sandwhiches for lunch, then I passed out for a couple of hours.

    They understand and watched a movie, its great that my oldest is old enough to watch her sister's for awhile!

    Most people don't understand and I agree it doesn't really matter.

    God Bless
  18. PVLady

    PVLady New Member

    After being on this board over 5 years I have seen so many stories that would make you cry. I guess you get very sensitive after a while.

    One thing that came out in all these posts is the fact people with fibro sometimes look very normal until a flare hits them.

    When they have a flare, you will not see them because they are in bed, or lying on a heating pad on pain meds.

    Often I am not good at articulating my real feelings, I can blame fibro. It is not just the one recent post but in the past we have had others try to solicit support from others about how they are bothered by people who say they have fibro but look well. What is worse, they will get several responses agreeing with them.

    I try to look at the "bio" to see if it is someone very young - try to find some reason for the lack of sensitivity. When you use a term "these people" it sounds so discriminatory in any context - just offensive.

    Do we have the right to walk through this world looking at others and deciding if WE think they are really sick or not. Would you say someone does not look like they have cancer or diabetes?

    Does everyone with fibro have to prove their illness to outsiders? If by chance they share the fact they have fibro, and they are seen on a good day being active, does that mean others should accuse them of faking, or not having fibro? Honestly, what difference does it make? Why even care? Why can't you just believe someone and let it go.

    One thing we all know, people with fibro really struggle to get help from doctors, acceptance from friends and family, etc. They have terrible losses in their lives - both financial and emotional.

    They lose husbands, jobs, friends, etc. Then we actually have members here who say they have fibro seeming to join ranks with the very people who victimize fibro sufferers. You would expect them to have even more compassion.

    If you want to risk making a incorrect judgement, why not err on the side of giving someone the benefit of the doubt and accept them. I wish I understood the psychology of getting upset thinking others are faking the illness you have.

    I am sorry I get so mad, so I better shut up now. There is a website called "words can heal". It has so many example of how people's words can hurt others.

    [This Message was Edited on 06/11/2008]
  19. fibromickster

    fibromickster New Member

    I just read the post you all mentioned and really take offense to it. Especially Hensue's statement. I definelty have my horrible days too, but I do have good days as well. But when I go in a flare it can be up to a month.

    However, I can walk 2 miles most of the time and I work full time because i have too, but I do have Fibro and was diagnosed by a Rheumatologist and a Pain Management doctor.

    I shouldn't let it get to me but I did and I responded to her which i probably shouldn't have. I just have to defend my fellow fibromates.

    Mom471 I am so sorry you are feeling this way and by all means come to us and complain. That is what we are here for. I don't know how you do it. My kids are older now and self sufficient. I wish I could come help you. Take care.
  20. Granniluvsu

    Granniluvsu Well-Known Member

    She apologized and was having a bad day and she apologized. So, I replied to her and the others on the other thread. Go check it out if you have the time.

    I think you will be pleased.

    Hugs, Granni

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