Just Venting/Feeling Worse

[lvfrogs]

HI everyone,
I am just venting today.  Do you all get "tired" literally of other people telling you they are "tired" too?  I try to be patient with my family and friends but sometimes I get so upset about it.  If someone asks me how I am and I tell them truthfully, that I am so darn exhausted. They will say "me too", even knowing that I have CFS.  I find that frustrating and I want to say something but then I feel like I am feeling sorry for myself.  If they don't have CFS, they cannot possibly know how debilitating it is. When I am tired or exhausted, it is NOT the same as them.  Any suggestions? I am getting really upset and annoyed over it?

Also, anyone else suddenly get worse? For the last 3 weeks, I have felt that I am steadily getting worse. How to describe that I am even more tired than I already am. But I am. and it is making me somewhat nervous and scared. I don't know why I feel this way. I am doing all I can do to help my CFS but I feel worse. Does anyone else feel this way?
Thanks for everything!

[FurballsMom]

Everyone needs a chance to let their hair down and vent.  It's maddening what we have to deal with.

If we didn't have a safe place to vent, I think we just might explode.  LOL

[lvfrogs]

To Karen,
I totally understand. I feel the same way. I almost dread for anyone to ask how I am feeling because I know I might as well not answer truthfully and truly,I don't want to most of the time, because it sounds depressing! So, I usually just say I am fine.
To Linda,
It must be hard to have Fibro and not a very helpful husband.Like you said, it is the generation and not much will change because of that. I hope you just do what you can though and not worry about the rest. It is very hard to do it all and we have to let things go.
Twitchingteacher and Fursballsmom
Chronic. I am with you. I wish they could understand that. I have certainly told them, but they don't seem to get it. My friend at work ask me everyday. Are you better yet? and she knows it won't go away. I guess they are just trying in their own way to understand.
Onenamilliongirl,
Thanks for the advice. I am usually anemic, so I have thought that maybe that is worse. I plan on getting that checked out!
gkneez and SuzCat,
Valid point! I know when I have a particularly good day with hair/makeup etc. I will get those comments too. But you look so good. Well, yes, hair and makeup can do that LOL but I still feel lousy.
Thanks to everyone who responded. I was just having one of those days when I needed to vent and I know this is a safe place to do that! I am truly grateful to just wake up in the morning and have my family and friends, online friends too!
Hugs,
Colleen

[SuzCat]

LOL with all of you! I often look really well - I have huge problems regulating my body temperature (for reasons still unkknown) and often have rosy cheeks and shining eyes from my weird fevers. So I look glowing, despite feeling dead. Doesn't help with the believability-factor at all!

Thank gd for this forum :)

[gkneez]

The thing I hate is when someone sees you talking or laughing. Then they make the comment, "Well, you look like your feeling better..." No, I still feel horrid but thanks for asking?

They think if you are acting "normal" you must not be sick. I HATE THAT!

[onenamilliongirl]

I totally agree that having this site to vent or see that we are not alone or crazy in our symptoms is tremendously helpful. My fibro & chronic pain is not as severe & detrimental to me as it was a year ago praise God. I would literally lay in bed knowing I have to get the girls 5 & 9 up for school and absolutely could not move for the pain, exhaustion & inability to MOVE. I would lay there & beg God to just help me get up please, over & over, finally thank God I would at least be able to move feeling like a 95 yr old, I'm 52 now. To my face I was told I ,just needed exercise, to get out more, a man, motivation, etc. Behind my back, I was just lazy, wanting sympathy, not really trying, etc! I'm thankful for this site I've found. Oh yeh about you being more tired then usual, I thought I was having a bad week or two w fibro, turns out it was a sinus inf. & anemia, check it out. God bless.

[FurballsMom]

I know what you mean.  I have well-meaning friends who don't understand why I can push myself a little bit one time, but can't seem to function the next time.  They say things like "You can feel lousy at home or lousy somewhere else".  The trouble is, that is only somewhat true, as anyone with FMS or CFS can attest to.  I can only push so hard, especially when I'm flaring.

[twitchingteacher]

I sympathize with those who have small children with lots of needs. Somedays just getting dressed takes most of my energy, and I don't know how people do everything they do. I'm glad my son is older, and my husband helps. I just wish people understood this is a "chronic" condition and we won't feel better one day, we just have to deal with things day to day and hope for the best. That's what's frustrating to me.

[Linda1949]

Know what you mean & understand. I don't know how any one with small children takes care of them and the family.  You sound like a very dedicated and wonderful mother despite your condition. My spouse & relatives aren't sympathic at all. always ask every day how you feel in a way like you should be cured over night of your fibro.I can hardly force myself to do anything.  I'm 60 and married in that generation where a lot of men needed caring for like mommie did. Which is the only true sign of devotion & love.  If he puts a dish in the dishwasher it's a major.Can you tell I'm venting now?? lol  It's bad enough feeling this way but having to deal with all the extra **** takes a toll on you,too.  Explaining  and appollogizing cause your not like you use to be. So many people are just into themselves or what ever you have they've had worse.  Hope things get better, just being able to express ourselves to fellow souls helps.

[kmil1999]

I'm with you!  I am currently even not wanting to go out or talk to anyone because they ask you how you are feeling.  I don't want to lie, but don't want to complain either.  

Some would think that I am depressed, but been there done that and know that I am not.  It's just I know someone will ask and it's hard to just get out of the house!

Best Wishes!
Karen

[lvfrogs]

Thanks everyone! I hear ya! I think I am pretty sympathetic to my friends and family's when they are tired, etc. My husband has terrible allergies and he complains all the time of being tired/headache.  I can relate to the pushing through, have to do that all the time with him and with the kids. I know, unless they truly have it, that they can't understand so that is ok with me. When they ask me, though, how I am and I tell them how exhausted I am, that is when it hurts me for them to say "Me, too!". No, it's not the same. Now, if they are telling me how tired they are, I am completely sympathetic because yes, they probably are very tired for numerous reasons. I am not at all unsympathetic, just commenting that I wish they understood more!
Thanks to everyone!

[SuzCat]

I totally hear you on the pushing through so your husband can rest too thing. Yesterday afternoon I was desperate to sleep, but my husband pipped me to the post and took a nap first. I knew if I woke him up, he wouldn't give our 6 year old the attention he needed right then. So I kept going, pushing through the heavy weight of exhaustion.

It seemed sensible at the time. Because of course, my husband woke up from his nap refreshed. I, of course, wake up feeling nearly as bad as when I lay down. But today I'm paying for it. I can hardly move for the insane jet-lag feeling. My head is pounding. Even my elbows ache. I couldn't get out of bed till midday.

But what to do? Like you say, we have it pretty bad, but our loved ones also have needs that have to be met. I'd say being a mother is the hardest thing with CFS. They need so much from us, and can't understand when we don't have it to give. They often don't appreciate the enormous self-discipline it takes to simply give them dinner, when every single cell in our bodies is crying out for an energy-injection that never comes.

We've got to keep our spouses on-side, or we're sunk.
Tiredness isn't a competition. If our friends are very tired, of course for them this is as bad, in their experience, as tiredness gets. So they think they know what you're experiencing and if they can handle it, why can't you? It's all relative. And they also need your sympathy, nearly as much as you want theirs. But I'm always saying, unless they have newborn triplets who need feeding at different times through the night, have a hangover and bad jetlag, they don't know what true exhaustion is.

You know, it's like they have a sprained ankle - it's painful and swollen and very inconvenient. But at least they know it'll be better in a few days. This disease is like having a crushed leg, all the bones shattered. Excrutiating agony and no knowledge of when, if ever, it'll heal. Your pain doesn't make theirs any less real. But you can show fellow-feeling for them. It's the envy of their comparatively easy lot in life that's so difficult. But being unsympathetic will only lose you friends.

[twitchingteacher]

It is hard to be understanding of others when we all feel so bad. I get tired of people giving me "advice" about how to feel better, when they don't know the pain I feel with most movements. That's why I enjoy forums like this where everyone does understand and I don't have to apologize for not feeling well. I also know we can't always be the ones who are in pain or tired, because people get tired of hearing that as well. I'm grateful I don't feel as bad as some people, and I hope each day to feel better than the last one, and not to get worse. Weather changes always make the pain worse for me, so with winter here, it gets ugly.

[mommyandwife]

I can relate to that one!  I think the same thing about my fatigue and pains.  I think that since ours is nearly unrelenting that it is almost irritating to hear someone else say they're tired or they hurt.  We push through this every day...join the club!  I try to hush up about my symptoms sometimes because others need the chance to feel they can vent as well.  However, I have friends tell me, "Well I get sore from working too," or, "I get leg cramps when I'm on my period too."  We are so sensitive to pain that it makes it that much worse!

I do however have to realize that I can't always be the tired one or the one in pain, that others are allowed to experience those things too. Sometimes my husband need his break so I keep pushing through so he can rest.  Sometimes vice versa.