I'm not sure there is a way to explain it. Those of us who are living it, understand all to well. Hopefully, those loved ones around us will understand in time. You did outstanding for being on vacation and then working those long hours. Hats off to for doing all of that. You deserved the day of rest. May God Bless you!
Wendy

It seems that trying to explain this fatigue to those without RA is like trying to explain labor pain to someone who hasn't given birth ! It has to be experienced to be understood.

I last explained as being shook violently while sick but instead of resting you have to carry on your daily life. It seems like I get better at explaining it over time. Lol I used to just say I feel like complete shit, which is also true but not descriptive enough.

I've used the description of having a bad flu 24/7 every day. It has seemed most relatable. Some people I've had to mention it more than once, some people I give up trying, some people have had to spend time for extended periods, see me out of work and dramatically change my lifestyle to seem like they get a sense of all that there is something serious.No iron clad way unfortunately. The ones that genuinely care want to fix it, think its temporary. it can be incredibly frustrating. Your story makes sense-you will read similar ones here on the board - a week ago
I spent a couple of days at my daughter's home, super supportive environment, less for me to do, etc. We mostly watched movies, went to breakfast, and she helped me at Target get some things I needed. The following Monday I was completely, and I mean completely wiped out, spent the day in bed, ate wafers because I didn't have what it took to make anything to eat, didn't even brush my teeth that day,and I'm currently on leave from work from a bad flare.
You managed a lot with the vacation and work and deserved a day off in spite of RA, good grief. I was a high energy,very active person prior to RA and it took a long time before friends & family accepted my limitations.

May this might help...

The Spoon Theory

http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

Its kinda like taking benadryl. Dose him and he will understand :D

Best way I have found is to equate it with the flu that never goes away.

The Benadryl suggestion is a good one though!

I do believe that you have to live this to completely understand it.

Linda

I totally understand.... it's so hard for them to understand bc they can't.... just like i don't understand what is like to have diabetes, cancer, or any other disease.

The exhaustion can be overwhelming and harder than the pain in many ways. It's hard to understand myself... especially when i look in the mirror and look so normal...

I've had RA for more than 5 years. Traveling and vacationing are still very hard for me. My family tries to understand but they have a hard time.

I've finally stopped expecting them to get it... and they have stopped suggesting things to me... my husband got a lot of but chewing s for suggesting to just snap out of it in the beginning, but we've both now adjusted. He helps our a lot when I'm in a flare/crash.

Many many ppl will never understand it even try. I stopped trying to explain long ago.
Best of luck to you.

HA benadryl. I like that!!!

It's funny because when he's sick he sleeps as much as he can, even if its a cold. I'll use the flu reference more often with him. It's true though!! Muscle aches, fevers, night sweats. It's amazing how strong this disease has made me !

Thanks everyone

I hear ya! It is very tough to verbalize fatigue in a way that doesn't make you sound like you're just complaining.
Lack of energy and fatigue is something I deal with too. Affects my social life, my exercise routine, and other things that I enjoy doing!
I live in Toronto, and just got back last week from a conference in Dallas. There was a lot of walking, long days in sessions, lots of social events (like leaving for dinner at 8pm when my routine is normally in bed around 9!). The whole trip was exhausting. I came home and started to talk about how tired I was, how sore I was, and although the conference was great and I enjoyed going, I wondered if the after effects were worth it, and my husband immediately jumped in and said that he didn't understand at all... going to new cities and off site locations for meetings was something he loved to do so why didn't I love it as much? Explaining that level of fatigue isn't easy - and it's true - unless you've dealt with it, you just don't get it.
I will definitely use the Benadryl example though - because that is something I know he can relate to.
If you try something new that works for you - please let us know! Best of luck to you...

Wow! I can't believe you did all of that before you collapsed with fatigue. I found that once I got my pain under control, the fatigue has been the most difficult thing to deal with. I have never been fatigued until I was diagnosed with RA. It was so strange to me to be exhausted all the time. Trying to explain it to family and friends is difficult. The suggestions listed above sound like a great way to explain it.
Hugs!
Debbie

indy i am proud of you

i have to make another trek to the big apple and my body is screaming from the last one

I am glad to have read your story

inspiration for what we have to do

depot

Thank you depot... I wish you all the best on your trip! I too have to visit the big apple on occasion and I know exactly how tiring that can be.
Be well! Keep smiling. Put your feet up when you can!

Loved the spoon story!!!!!!!!!!!!!! Printed it out to share with others.
I sometimes try to explain the fatigue as walking through wet cement.
I've also offered to give anyone that is TRULY interested a demo
using ankle weights, taping joints, etc.,but so far the response is "no thanks, I'll take your word for it". So they still don't get it.
My husband does his best, bless his heart & I love him for trying.
My children just stop asking me to do things 'cause I'm not "able"(their words, not mine)
Hang in there, rejoice in the good days & hide under the covers on the bad days..............ha, ha

do you have ankle weights and wrist weights anywhere in the house? maybe the garage? you know from the gym rat days? have your spouse wear them for 24 hours even to bed. over wrap (ace bandage a couple knees also to restrict range of motion) or you could shake it up and put a resting splint on one hand (impedes functionality) and a weight on the wrist on the other (gets joint tiresome fast)

then to induce brain fog yeah dose the benadryl then keep up the highest pace you can including parking at the rear of shopping centers, choosing that week to face off with recalcitrant teenagers, reviewing your pension plan (lots and lots of numbers) and leaving all the dirty pots in the sink

or you could check out a couple books at the library on RA and leave them on the coffee table

depot