Social exhaustion/fatigue

[dck696]

Oh my goodness, I literally began to cry when I read these posts.

I have PPMS, and my disability so far is limited to needing a cane to walk, and the "invisible fatigue". I am on disability, which means I should be able to rest enough to "save up" for potentially stressful situations, right? Wrong.

When I was working full time and healthy, I could handle so much stress. Now, I find if my son is coming home from college for a homecooked meal, I stress and ruin the enjoyment of it with worrying and feeling so overcome.

I hadn't had a vacation in three years, and finally we went on one, and what normally is relaxing absolutely put me through the ringer. The heat and humidity of Florida meant I couldn't participate in things I formerly could, and just the packing and preparation stressed me beyond belief. Now I really don't know if I ever want to take another vacation, because I ruin it with my MS fatigue and stress.

I dread the holidays, because it will stress me out as well, even if I am not participating a great deal in preparations. It's so frustrating.

[poppydarling]

...Granted, there are 10 thousand rips in the thing and it is paper thin, but I have gone so far as to bring this rag to the dry cleaners for repairs (to the reception of yet more judgmental looks). I have turned into that weird old lady who has no qualms whatsoever about going outside to get the mail or meandering about he backyard while wearing the scuzzy thing. Hey, at least I wash it (on delicate, of course, or it would go down the washing machine hose along with the suds)!

This whole post made me laugh so hard. I have a pair of "comfy capris" (soft cotton cargo shorts with bleached and faded areas all over, like camo). I live in them in summer since they hide my unshaved legs, and I will never throw them away. For winter, I have Fleecy Robe, my dear warm, snuggly and comforting friend that I can actually put on easily, with little snowmen all over that make me look like an overgrown child

[Kittianne54]

As I lie here, propped up in my hospital bed, my body is aching with the day's activities. Usually, my day is spent trying to just get through it. I consider it a success if I get up, feed myself, use the bathroom. Most days are spent watching tv and using my iPad. Dozing off and on.

A good day is when i don't have to leave the house, and no one is expected over. If I have an appointment, it involves so much energy, I need to start the night before. Showering and dressing is a long drawn out process.

You hear medical people talk about the 'quality of life'. This isn't any kind of life, it's just existing day to day. It gets so that when I wake in the morning, my first thought is "darn it, another day to get through".

I cringe when my kids say they need to get me out more! Getting out is a nightmare. They don't understand that my goal is to not have to go out, or see anyone.

[onlyairfare]

It is certainly true that I don't socialize like I used to, but that is true for many people, whether they have MS or not, healthy or not. We get older and less active and change our interests, we have kids and focus on their school & sports activities, then they grow up and we become the "grandparents crowd" sharing photos and stories - just like non-MSers!

I try to do the things I enjoy that interest me, though in smaller shorter "bites." Maybe I put in a brief appearance at some party and go home before I get anywhere near tired. Maybe I go to one event instead of 3 or 4. Maybe I will spend more time sitting and chatting with one person in depth instead of a superficial interaction with 4 or 5 people.

If I am home resting and I am not up to attending a friend's major event (say her child's wedding) I will send her a sincere hand written note via snail mail. A written note is memorable, and in a couple weeks we can have coffee and she'll show me the photos.

I just got back from a cruise vacation - to a northerly location where it was cool, not some hot humid place. I rested a lot and missed some of the constant activities, but when I was up to it I also attended a lot of activities that I wouldn't have if I had not gone on the vacation at all. I spent a lot of time with my daughter, who also came on the cruise with me, and there was plenty for her to do with others when I was resting.

I don't shop in malls or big department stores, as they drain me. I go to a small store with parking right in front so it is easy, or I order online.

I don't like talking on the phone at all, so if I "need to," I schedule a time and keep it brief.

I like being social with other people, but I can only do it in small doses. I've finally accepted the concept of "good enough," even if it is not what I used to love to be able to do.

[onlyairfare]

For Kittianne

I too have some days where my goal is to stay inside and rest, no tasks in public, no role as a hostess "entertaining" visitors.

If you would like a very little bit of social interaction, could you "draft" your kids to help out? Have them talk with the one friend you might like to see in the next few days, and invite her to spend 15 - 20 minutes visiting you briefly for a chat. The kids could make sure there was iced tea ready in the fridge, along with some snack. The visiting friend would probably be happy to see you and bring in the drinks/snacks to your room for a brief visit, then depart timely before you're worn out.

As family learns your limits, they will better understand why you need help planning an outing and starting the night before. On my recent cruise, I experienced an unfortunate bladder incident while lunching in the dining room, and my daughter helped me resolve the problem appropriately. Now she "gets it" in a way she never did before.

Just a thought, since you sound lonely. There is also nothing wrong with being alone, but not lonely, if that works best for you.

[JaneZ]

I dread long weekends. It just draws more attention to how much energy it takes for me to do anything and how little I really want to do because of it. Any kind of appointment really stresses me out. This is not living.

Everyone around me complains about their job. I can hardly wait for them all to go back to work. It helps me to read the forums and hear from people who get it.

[rdmc]

A

A good day is when i don't have to leave the house, and no one is expected over. If I have an appointment, it involves so much energy, I need to start the night before. Showering and dressing is a long drawn out process.

When I look at my calendar for the next week and there are no drs appts on it, I give a big sign of relief...yes that's my definition of a good week . I said the other day in another thread that I wonder if drs even realize the stress and fatigue it takes to get to the office...I don't think they do, because they look surprised when I'm huffing and puffing, and totally spent. I don't drive anymore (thankfully I have a pool of chauffeurs to help out with that...thank the Lord for family members.)

I work from home, that means I use my wedge pillow system to prop myself up in bed, put on my comfy capris (somebody else mentioned liking capris too) and hang out in front of my laptop for most of the day. I get up to let the dog out, do some picking up around the house, and cooking...I have mastered the "art" of making a dinner that has a prep time of no more than 15 minutes, which is about my limit of standing.

I try to get up about every hour or so and make a lap around the inside of our house to work out the stiffness.

I don't mind having folks over, but that's usually family, and they're all "tuned in" and I feel no pressure. Too many people in one room, and I have to find a corner and hunker down. The noise and movement can trigger my "Walmart syndrome."

Maybe we MSers, plagued by fatigue from exertion, etc...should have our own adaption of Newton's Third Law of Physics, For every action there is an equal and opposite reaction, it's just in our case the reaction is exhaustion and/or a nap.

[ndm0795j]

Me too

So glad I found this! I can totally relate to social exhaustion too! It has a name.
My husband and I vacation on the beach in late fall or early winter and it's wonderful. Not too many people and weather is usually great during the day
I feel relief in knowing others feel this way.

[Beach Betty]

Beach Betty Party Pooped!

For about 2 years now I have stopped going out in the evening. I just am so tired by 3 or 4 in the afternoon, and then my coordination gets really worse (can't seem to get that fork into my mouth without stabbing my face), my speech is crazy (get a mirror, it's all backwards), and I don't seem to be able to comprehend when a number of people are around me talking (so I feel lost).

Friends are "beginning" to accept that I no longer accept invitations for evening. Probably accept means just don't ask any more. But, many still look at me, and some even say, that I don't look sick so it is hard for them to understand that I don't go out at night. Even family thinks it's just my imagination. It does make me sad that life has thrown me such a deviation from what I had planned--but what to do? I just give thanks and sorry can't to invitations. If people don't understand, there is nothing I can do about it. I use evenings for quiet time, music or at home movie or just going to bed!

[swpanther1]

It has been so helpful to see that others feel exactly the same way I do!! I retired 3 weeks ago from a very stressful job (was there 26 years, Family Court and Domestic Violence division)--and all I want to do now is sleep, cry, etc. One strange thing is that I have more time to think...which is good, I need to grieve and heal.

Thank you for sharing, everyone...it truly helps knowing I'm not alone!!

[DianeD]

Big help actually!

Just want everyone who posted here to know it has actually helped me to know that so many others share this aspect of MS. In a kind of convoluted way, I think it makes us feel better to know that others feel as we do and are going through much the same.

There is a sort of relief in accepting things. That's not to say you give up, but you do things differently.

I host one party in my home around Christmas. I ask neighbors and close friends. I do everything early and a bit at a time. I have a plan to follow.

I don't go out to socialize too much, but it's up to the where and why of it; also how I feel.

Our lives don't just involve us though. We have spouses, children, other loved ones. I recognize how difficult it can be for our spouses and children because what we can or cannot do affects them tool.

My sons are grown men with good lives and interesting things to do. That's a good thing. I didn't get a dx until they were out of their teens.

I think we have to accept a new normal. I also try to not feel guilty. Today I'm still in my robe. So comfy and really no one is here to care.

Someone here mentioned how hard it is to get ready for appts. Ugh. I agree. It takes longer to get ready than the actual appt. will last.

I use my computer a lot. I shop online; I've even shopped online for my groceries! Worked out great.

I constantly scope out the web to find some shopping site that has easy care, comfy, at home clothes. I don't like jeans that constrict my waist. I actually have ordered a couple of caftans. And...OMG!...mumus. Once I was a fashionista, but no more :-)

One thing MS enables is to leave behind perceived notions of who we are and get real.

Some sites I love to visit are Etsy, Pinterest, Facebook, MS sites, etc.

Good luck in developing your own plan.

Diane

[mkwhite35]

I'll just play the devil's advocate here...

Is social activities truly making you tired- or is it just an excuse?

And for those who say you're tired from hiding your symptoms- why hid them? Sure you might have to explain, but it will add to people's education, but probably less tiring than trying to hide something that is a part of us.

And a last devil advocate question to throw out there-
Are you trying to hide MS from everyone else- or yourself?

[aisunnen]

A huge Thank You!!

To me the posts from Onlyairfare and DianeD were inspirational: Do as much as you can do and enjoy it as much as possible, planning is everything, and letting your family and friends help is as rewarding for them as it is less stressful for you! Just getting up and dressed is an achievement, mummus or capris or caftans are cool, and trying to minimize TV is an excellent idea. What about reading, for pete's sake?! Taking virtual vacations on the Internet? I happen to be blessed by enjoying these things, and I do read current events online -- doesn't make for happy reading, but at least I'm not as isolated as I might be. Writing to your favorite/unfavorite politician is another outlet. Of course they aren't listening to you personally, but their aides are counting the responses, you can bet! Giving up is not an option, not for me, anyway.
Doesn't mean I don't get it, I have the same problems. Just being here on the forum means you have some initiative. Keep it up.

[poppydarling]

Yes, DianeD, the major advantage of not going out much--big soft tops, yoga pants and kaftans! lol I've always been much more comfortable in loose, flowy clothes (sorry, What Not to Wear ) so now the "weather" suits my clothes!

[DianeD]

Yep!

Yes, DianeD, the major advantage of not going out much--big soft tops, yoga pants and kaftans! lol I've always been much more comfortable in loose, flowy clothes (sorry, What Not to Wear ) so now the "weather" suits my clothes!

If we just get an attitude that we think it is important for us to be comfortable we'll be happier. Maybe this is an age thing, but really I have older friends who are well and very fashionable. I look for things that will minimize what it takes for me to regularly be presentable, not necessarily fashionable.

I do wish more clothing manufacturers would make nice looking, easy care clothing. Mostly the muumuus and caftans I've found are cotton and they wrinkle and shrink. I know you can use wrinkle free spray which is not too bad, or you can remove from the dryer before completely dry and adjust the hems, plackets, etc. Still, what I'm looking for is ease.

If anybody finds clothing that is simple and easy care, plus not weird, let me know.

Diane