It sounds like you have young children? That is difficult if they are too young to understand illness. Nevertheless, in my family I had an aunt and uncle who were both very sick when we were young. We mainly knew they were sick by their actions...my uncle and his asthma machines, my aunt with her bending over in pain from an attack. They were not able to be disciplinarians due to illness, so we could do anything we wanted as kids, however the kids turned out OK anyway.

Since I got CFS in my 40s and had no kids, I mainly had my parents and friends to inform. I told them but it didn't seem to make much difference until they actually saw me melt down after overdoing. I also cried I was so unhappy with my condition.

Seeing these meltdowns really made a difference to family and friends, now they bring dinner with them when they visit, knowing I won't be cooking. Actually I could do more but they don't know that. I have successfully trained them and now have it much easier.

In your case with young children I would follow my aunt and uncle's example and just close your bedroom door to shut out the noise. And if there is any way to avoid taking them to the store with you, I would do that. My aunt let a college girl have a room in her house in exchange for household and perhaps shopping help so she didn't have those scenes with young children.

Kids will be kids so I wouldn't expect they will be able to change their behavior due to your illness. And perhaps your husband can take over the shopping and disciplinarian role so you don't have to expend energy on it.

Good luck...

I should add that I have very fond memories of getting on the bed with my aunt and uncle because they were always in bed watching TV. They never did get well but somewhat better. We were all in the habit of talking to them while they were in bed, I would either sit in a chair or lay on top of the bed with them.

These memories have helped me with my own illness, I don't mind at all if people talk to me while I'm in bed.

It's not going to be easy. I tried for over fifteen years to explain my illness to my relatives, but they never did get it. They kept saying things like "You should be using your education to get a good job and make a career."...or "Well, it's not like this is going to interfere with your life in any major way. Go to a doctor, get some treatment, and get on with things."

I finally had to give up and stay away from them. I hope you do better with your family than I did.

Don't let them treat you like a doormat. You have to stand up for yourself, don't expect compassion from them.

"I'm tired all the time; I must have it too."

Healthy people have no idea what it's like. It's beyond their experience.

They are clue-free. They THINK they know what it's like, but they don't.

They are bereft of clue. It's like that with depression -- I'm still wondering how long I can hang on, feeling like this, and why should I, and people will tell me I need a hobby, or meet new friends, or (The Worst) "Just cheer up!" (Now why didn't *I* think of that? )

I saw in 'a thread' here that friends and family didn't 'get it' until they saw first-hand the person melt down after overdoing, and how long it takes to recover. Perhaps a few 'planned' crashes in front of them -- like instead of chasing and peace or bringing to heel, just melt down and cry. Right then and there. Make them see that YOU need attention; that you NEED it and their bad behavior makes you sicker.

Hollie9, your suggestions are right on the mark, as usual.

Good luck, Jenna

Yeah, it's really hard to explain it. I get very frustrated because I feel like people aren't listening to me even if I do try to explain it. You know what I mean--they start looking at something else while you are talking or they change the subject. It can be hard to explain to kids. My kids know, for example, that they can't talk in the car when I'm driving. The rule is, "You can talk if Daddy is driving, but not Mommy." I have to use every bit of my mental and physical energy to focus on the road. So, they have finally gotten that rule down, but my kids are a bit older than yours. Loud noise, light, and excessive activity in your vicinity will most likely trigger you. I find that when I babysit, the kids wear me out pretty fast. It's definitely something to take to God because your best chance of compassion is with him. Smiles.

Even grownups and our best friends can't understand, you can't expect children to not behave like children and stifle their natural growth.

Try to get some help to go with you to handle the kids when you have to go to the store or go without them.

I was 42 and my daughter 21 when I was diagnosed but I have grandchildren now. I think they are more understanding than my daughter.

I know what you mean, Tri! it seems like simple 'input' -- noise, activity, busy-nes -- can wear me out sometimes. It's certainly happened to me. I think it's because our poor, tired, cognitively-impaired brains are trying to process all that input, and it's like you're spinning your wheels in snow or mud or bowling balls...

jc, I feel for you. I was diagnosed with fibro, then cfs, when my son was about five. (My doctor expunged those dx's from my record at my request. I didn't want the stigma, nor could I believ it....)

Well, even before, I tried to shop without my son, and cut back on my shopping. At home I would close my bedroom door when necessary. Since I have the one boy, he wouldn't run about...I can only imagine more than one!

Slowly I became accustom to reclining on the living room couch while he played. I sat down in public as often as possible. I felt ashamed to make these concessions, but now I don't.

Maybe clarify the worst triggers, and be as specific as possible. Could your husband corral the kids when out, or striving for the kids to 'sue their inside voices'? (I used that phrase with my very vocal son who really projects his voice...)

Good luck xx

hollie9- We have finally started leaving the kids at home during shopping trips. I don't like to shop alone, because I never know when I'm going get weak in the middle of the store. The boys are eight and ten now and can be trusted for an hour or so at a time alone. It does make a huge difference. Funny thing is the kids are getting it better than DH, probably b/c I get more time with them. They see me cringe and they immediately apologize for whatever they just did. Doesn't stop them doing it, but they are starting to get it.

Richie-I'd so sorry your family didn't understand. You're right to stay away from those that refuse to see. Why put yourself through the aggravation? I hope they do learn the truth eventually. Hugs!

Jack- I think that's a great idea. I have stopped resisting the meltdown in front of DH and the kids. They are getting it now. It might be okay to melt in front of my mom and sister, too. Sis will definitely need a slap in the face to see it, but I don't hold it against her. She has MS and that's another lovely invisible disease. She seems so fine on the outside, but I am guessing that she is not as fine as she appears.

triunfadora--so True. God is the one who always gets it. I have had my prayer sessions when I just sit there and cry with him. I don't both asking why anymore, but just talk about it. You are right on about the excessive activity. My boys get so hyper and I frequently just remove myself if I have to ask them more than once to stop it. It's easier for me to leave the room than for them to calm down.

skinnybinny-Thanks for sharing! I think it is tougher for those who have seen us before the disease to understand that things are different now. My dad still doesn't get it b/c he still thinks of me as that 18 year old kid that had tons of energy.

spacepony--Thanks for sharing. We are finally starting to shop without the kids. They are eight and ten, so just reaching that age where I feel comfortable leaving them for an hour or so. I need to give myself permission to just close the door and trust them to be okay when I'm home. I did that yesterday for a little while and it was good.

Thanks to all of you for sharing your experiences and tips. I really appreciate it!

There is a video that was posted on here back in February (?) that was about CFS. Just google CFS Sleepydust. You can listen/read what it is like to have CFS. I'd have anyone who does not 'get it' to watch that. It's not very long, but it sure nails it. You might check it out first then sit down and watch it with your husband or any family member who might need help understanding what you are experiencing. Glad to hear you are able to leave the kids alone a bit. And I agree with all the others that melting down in front of others or sitting down or lying down is just OK. I sit and lie down where ever I can, even if it's not always convenient.
Hang in there - and yes, close that bedroom door and put in the ear plugs when DH is on duty with the kids!