Have you ever just been tired? Not MS Fatigue tired but just weary tired?

Tired of getting your hopes up that something might "be the thing" that will help you only to have it just be nothing special. Tired of getting up to the same challenges every single day and nothing seems to get any better no matter how hard you try.....or pray.....or exercise......or well anything.

I'm not depressed....at least I don't think I am. Not suicidal.....Lord, no. I just am SO tired of people telling me "maybe if you try this" or "maybe if you stopped doing that". Like their ten seconds of critiquing my life will come up with the magic bullet to make it all better. I know they're just trying to help but please.....stop trying to help and just be my friend. Believe me, I have tried everything and then some so chances of you coming up with something I haven't tried are slim. But thanks anyway. There's no "nice" way to tell folks that their suggestions have been tried. Been there done that. Even when you do they want you to try again. Don't give up!! They become your own private cheering squad.

Then there are the ones who look at you with those pitiful glances and just say "I'm sorry" all the time. I know they mean well but after the hundredth "I'm sorry" it gets to be a bit much.

I guess I just want people to treat me like they used to but I suppose that's not even possible because I'm not even the same person i used to be.

I really didn't intend this to be so deep. I guess I just want the old me back. I spend hours of my day just daydreaming of how it used to be. Is that healthy??? I don't know but all I do know is that "me" isn't coming back. I look at my walker and wheelchair sitting in my room and wonder who those are for. Then it hits me.....they're for ME! No! I don't want them! Makes me mad that I need them. Makes me mad that I cannot get on the floor (voluntarily) and play with my grand children. Makes me mad that I cannot do my own laundry. I'd love to have a houseful of chores to do.

Makes me mad that 20 minutes from now I'll be the one telling myself that I should be thankful for what I DO have. And I AM thankful......there's just little breaks of anger that interrupt my thankfulness. Does any of this make any sense at all?

Sometimes I just wish others could read my mind and act accordingly. How's that for an unrealistic wish?

What you have described is outside my experience so I have no words of wisdom to offer you.

What I do know from NT is that you are a strong, thoughtful and considerate person.

I admire you.

Thank you, Kiwi. I appreciate your post.

Hang in there Kitty, you are a strong person. I believe we all feel one time or another everything you said.

Only someone that is going through MS can understand your frustration. There are times when I just want to scream at the person that is giving me the advise of what I should do for my problem.

I actually just had someone a few weeks ago tell me that MS means that you are only very fatigued at times

All that free advice!! We know what having MS means, we just have to hang strong and pray to the Good Lord to help

I think all of us have had that... ugh.. feeling. And as you say it’s not depression, not feeling lost and alone, but more the desire that the folks around you never heard of MS and the internet 😑. Even my own mother whom I adore and have a great relationship with can get under my skin a lot of times when she starts in on her personal endeavor to cure MS with me front and center as her guinea pig... maybe I should try giving up gluten, sugar, caffeine, fat, red meat, potatoes (after all they’re a member of the nightshade family), salt, pepper, garlic... or maybe I should eat more red meat, more bread, more sugar, have I tried taking vitamin A, B, C.... has my doctor checked my zinc levels, and did I discuss with my doctor every topic under the sun with a minute by minute account of my entire life starting with “I was 133rd egg released from my mother’s ovaries and joined with the 12th sperm my father created on the night of my conception...”

I mean seriously, I get that it’s hard for her and she probably blames herself some, but it’s not exactly fun and games for me either. And it’s a bit harder to have the acceptance of the nature of the disease when folks keep telling you about trying this that or the other, like it will be some magic bullet because there was a completely unproven and more times than not unduplicable theory or article where this one time it worked for someone... maybe...

And it makes my mother come off as somewhat like a rabid dog with a bone, but in every other medical instance she is the living embodiment of a logical, rational and reasonable human being who can tell others in detail about their health concerns and when perhaps it better to simply accept what fate has dealt you or fight it for all you’re worth with proven treatments and therapies...

So I kind of have to listen to her off the wall advice with a grain of salt for the absolute love she has for me that she will search to the ends of the earth and nothing at all sounds too crazy if it means it’ll help with my suffering. But after spending a year of going over why many of her crazy ideas were not founded in science... I’ve taken to simply telling her... “yeah! I’ll give it a try and see...” and then simply carry on as usual . Which I really despise as prior to this disease I have never before in my life lied to my mother, my father frequently, but not my mother, I made it through my childhood with the truth disguised as sarcasm and omittence.

And now I’m a liar 🤥. Even to the point of occasionally lying about being busy so I can take a break from her latest “cure”. I love her... but I think I would love her even more if she lost access to the internet, library and running into anyone who has MS themselves or knows someone who did who tried xyz and now you would never even know.

And when that’s not driving me crazy enough there the chronic “are you ok?” From everyone around me if I give the slightest grimace of pain, or a bit more of a huff when standing or sitting, if I sit quietly for more than 30 seconds. And then when I respond yeah, fine... I get “no really, what’s wrong”... “bleepin’ MS ” is what I truly want to respond with and admittedly i have on a few occasions. I mean it’s been years upon years for some of these people, and witnessed many times throughout the day, just accept it already that if something is “wrong!” aside from the usual I’ll let you know otherwise, guess what, the only thing wrong with me is MS.

But I have discovered a little prayer that gets me through most days.... “Dear God save me from your Good Samaritans, and if I cannot be saved from them, please Dear God save them from me! Amen” I figure God will forgive me for the humor since he clearly has a great sense of one to come up with this disease.

Kitty,
I'm so tired of having MS and being a "brave little soldier " and people telling me how they know of someone with MS and what they do and it REALLY helps!!!

I'm tired of advice given 5 minutes after we meet. I just smile and say thanks.

Kitty, your whole post was as though you read my mind...

Blessings

I get so tired of my husband being seen and complimented by others about what a wonderful caregiver he is.
He plays that card with others sometimes.

That is one thing I have to say I love about my DH, don’t get me wrong he is an awesome care-giver really makes me feel horrible most of the time because he can be so great, but whenever someone tries to compliment him or offer their sympathies to him for having to care for me... he laughs outright at them and says actually our lives would go so much better if I would just let him take care of me. He’s pretty much told their entire county I’m too stubborn, too hard-headed and too stupid as well to take it easy, sit back relax and let someone help me. And his complaints are echoed by my parents and aunt and uncle.

Meanwhile I get very tired of listening to everyone tell me “you do too much!” While I’m thinking of the piles of unwashed laundry littering my house, and that the last time I was truly happy and super excited to get something was a super lightweight vacuum cleaner for hard floors just because now I can “sweep” my floors at least once a month.

It’s been years now, but I still miss being able to clean my house top to bottom in a day, and having never met a dust bunny and spring cleaning only taking 2 days and included cleaning out the garage and attic. I miss being able to load laundry into the washer, switch it to the dryer AND fold it and put it all away. That’s now at least a 2 day project

I just want a clean house, a trimmed garden and time to enjoy life some without fearing taking one day off from doing laundry is going to leave me with an insurmountable back up of laundry that requires asking my mom or aunt to come to my house and do my laundry for me.

And through it all, everyone tells me, take it easy, you can get that tomorrow just take a break... DH included who works between 60-90 hours a week and still cooks dinner and does the dishes and the food shopping. Cuz yeah none of that makes me feel like a waste of space and money already I should just lay back and eat bonbons watching soap operas.