Explaining sounds like whining
 

I sound like a broken record. I wouldn't be surprised if I posted about this a few times already.

I think the frustration of reasons sounding like excuses, and explaining sounding like whining, is right up there with my worst physical symptoms.

People with MS deal with this in several ways: explain patiently, be vague, explain briefly, stay home, respond with "bite me"...the list goes on.

I don't have the energy for peripheral friends, or a good way to say to them: "Sorry, I only have the energy for one phone conversation per day. It's going to be my daughter, not you."

Or a kind way to say, "I can only go out for lunch once a month, and sorry, you're not on my list of top two friends."

I thought I had made peace (ha) with the idea that I have a limited amount of energy/spoons to parcel out, but it's hard when this issue keeps popping up NOT as hobbies, household chores, etc. but as people. I hate having to prioritize people in my life, but there it is.

My energy has to go first to feeding relationships with my husband, my children, my granddaughter, my couple of "best" friends. That leaves a lot of people that I really, really want to spend time with, but I just can't. And it vacuums, big time.

I agree!

One good thing that has come from this economy is that a lot of others are drawing inwards to home and family too. I made that move a long time ago and have lived it since then.

When I was relapsing every three months it was all I could do to get out of bed and make it to work. I didn't go out and socialize, I didn't visit anyone, I didn't call anyone. Friends dropped away like shedding wool clothes on a hot day.

I got tired of trying to explain. I got tired of making excuses and I just stopped. If they didn't understand or accept what was happening with me, I didn't waste my energy trying.

I have family here now from out of state that we haven't seen in a few years (pre-diagnosis) They are getting a first hand look at what has changed. I think maybe they are closer to understanding. There's still been some insensitive comments. I don't care. I'm too tired to explain again. I think maybe the man gave them an earful after I went to bed last night at 9:00 p.m.

This morning one of them came out and apologized. I told him that even though I may not be the same in energy level, I am still the same person, just more tired!

It DOES vacuum big time. I just wish it worked on cleaning my floors! :cool:

I totally agree. I get tired of being made to feel guilty by people who won't take the time to learn about my disease.

:hug::deadhorsebeat::hug:

preaching to the choir. I want more spoons.

Totally hear ya. I've shortened my explaining to "I have good days, and I have bad days".

There's only one person that makes me want to scream, but I know she means what she says as a compliment - but if I hear "you carry it off rather well, you don't look like you're having a bad day" I think I finally will scream!

We finally got family to understand why Jim needed one day to rest in between days. If he goes out on Monday, he's resting on Tuesday. Friends, only a few get it, and they are still around.

We're going to see some friends we lived next door to in Germany at the end of May. They couldn't understand why we needed a hotel room and couldn't stay at their house. I tried to explain how we have to take the whole hospital with us when we travel and how Jim needs privacy. They were OK with it but ended with "Just know you can stay here." That was a nice change of pace. I don't think they fully understand yet but will once we see them. Last time they saw Jim he was just diagnosed and was using a cane.

These friends took Jim in when he was diagnosed and helped take care of him. They were some of the best friends we had. I had to come home to the US to have our youngest child and Jim was left behind. They filled in for "his family" while he was being discharged. It will be good to see them again.

I guess I've said "I can't" too many times. Nobody asks anymore. In fact I barely hear from anyone, anymore.:(

A big part of that is my fault, because, I don't communicate, except by e-mail, with anyone...just got tired of explaining, all the time..:rolleyes:

I have to admit, I do miss being the life of the party, sometimes. Mostly, I am content with the statis quo.

I am thinking of copying all of these posts and sending them to family members and friends who just do not want to get it.

mMy cousin wants us to come to her house next time. She is really sweet but how do I explain no because :

1. It's a 3 hour drive. If I have to pee, m0ot bathrooms are big with stalls and all women. DH can't come unless we upset someone or get everyone's cooperation. Yes, there is a big handicapped stall but how am I guaranteed its on the right side where hand works, left is useless and in the right place.

2. How do I get in the house. Only a few steps? Your DH is older than old me and has a bad back. DH doesn't all the time but sometimes , so he has to me up???!!!!
3. Can I get my chair around your house? Are there paths to Bathroom and my bedroom. Is my bedroom on first floor?

4. Is the bathroom I use set with a grab bar by the toilet on right side or does DH have to toilet me all weekend. No Beer, thank you. I drop things. Can I bring my grabstick?

5.Can my chair and my knees go under your tabLe. In a chair it's slightly higher, table aprons often hit my knees. Does your sink have a cabinet undeer it. I'll have to brush my teeth sitting sideways to sink, will I be able to spit into sink from there.

6.Is bathroom door wide enough for my chair? (neighbor's wasn't).


7. I get tired. Can I take a nap?

(I am thinking of copying all of these posts and sending them to family members and friends who just do not want to get it.)


I understand completely. I have seriously considered doing this very thing. My family has been told that the only time I leave home now is to go to the doctor because I fall so much. The last time I was at a sister's house, I fell 3 times getting out of a chair. Not back in the chair but fell to the floor. When I tried talking to her about this, her comment was, the next time we were near her house, stop by and see her. I JUST WISH PEOPLE WOULD LISTEN SOMETIME!

Sometimes I forget and fill out my list
Just as I did in days gone by:
Do laundry
Get groceries
Call Carolyn
Hem pants
Clean bird cage
Cook squash
Pull weeds
Then I notice the fine print,
Just like the warning on November’s ballot:
Vote for two
Vote for ONLY two
If you vote for MORE than two
Your vote will not be counted
And your ballot will be discarded.
Thrown away? Wasted?
It’s discrimination, I say.
It seems as though everybody else
Can make a list and do it all,
But I can only vote for two.

I've been retired due to ms for less than a year. Already I find my relationships with even my best friends (who I worked with) is drifting apart. And when we do see one another we have less and less in common. Partly because I dont feel like visiting and going places often to keep the commonality between us built up. It's not quite as frustrating for me as it is sad. It is a very hard part of this stupid disease to deal with.:( Glad I have some new friends on NT. You guys don't expect me to dress up and have loads of energy. I can be your friend with my pj's on....:hug:

You guys are really hearing me. And I'm hearing you. Here's another excerpt from my life: the Costco Saga

Her: Hey, want to go to Costco?
Me: Sounds like fun. Which hotel?
Her: Hotel? It's only two hours away.
Me: No, it's 100 miles away. It takes me almost three hours, with pit stops.
Her: Then I'll drive.
Me: No, I need to take my car because I have all my stuff and equipment that I need. (And I can control the air-conditioning)
Her: Well, still it's only two hours when you take I-89.
Me: I can't drive in that kind of traffic, I have to go the back way.
Her: I know, you can use the motorized cart in the store!
Me: That will help, but it still makes me exhausted to deal with the noise, the lights, the thinking of what I need, etc. I can't do it all in one day.
Her: Okay, then we'll stay at a hotel. It will only be an extra $50 to stay at Hotel Dump.
Me: Sorry, I need air-conditioning.
Her: Oh.
Me: And my own bathroom. You'll have to rent your own room.
Her: Uh...
Me: By the way, you won't be able to buy much stuff. I need to bring all my medical stuff, my special pillows, my three pairs of shoes, my canes, my rolling walker, and my portable fan.
Her: Uh...well...shall I make hotel reservations for Tuesday?
Me: Go ahead. But if I have to cancel at the last minute, you'll have to pay for the hotel rooms. I can't afford it, because I'm on disability.
Her: You don't really want to go, do you?
Me: No. Yes. I don't know. (bursts into tears)
Her: Um. Maybe we'll do it some other time. I'll call you...

I NEED clothes. its no longer a want, its a NEED. I have been in this back and forth debate with friends, and family for about a year now. We have some local stores like...wal-mart, JCP, Sears, and used to have a fashion bug. We have a Target, but unless your a teenager, your not getting clothes in there. I NEED comfy clothes that dont make me look like an 80 year old lady dressed me. I need fashionable clothes that dont make me look like a teenager, or drunk fashion designer dressed me. Since the only reasonable, fashionable, and doable clothing stores are 2 hours in either direction, I have to make it an over night stay. Since the hubby isnt good at shopping, I have scheduled it with g/fs to step in. One didnt understand because I REFUSE to shop on the weekend. too many crowds. The lights, the noise, the crowds, it saps my energy quickly. I have rescheduled this twice. My poor friend had the day off from work for a Tuesday run, and at last minute, had to go in. Told her boss her plans changed. She has been quite patient with me, but its not as easy any more as "lets go to the mall."

*sigh* i NEED clothes.

Absolutely 100% right on!

The person I considered to be my best friend has all but stopped calling me. I know she's busy....she works full time....but when she does call it's just not the same anymore. I know she doesn't understand or "get it" regarding my MS. I know by some of the remarks she makes. She told me once that she calls to invite me out even though she knows I won't go because she doesn't want me to feel left out. I appreciate that...I really do....but it makes me feel even worse to know that everyone is going out, having fun, and even though I want to go I know I can't do it. Just the process of getting ready to go out wipes me out. It's either or. I can either get ready to go and then stay home....or I can not get ready to go and go out! :rolleyes:

Hey, at least I can look decent while I sit here by myself!! :p

I've gotten to where I just use mail order. It's so much easier and by the time it arrives I've forgotten I've ordered it so it's a surprise!! :o

My story too, Kell..:hug::hug:

I had started the process of weeding out people in my life before my dx for a variety of reasons.

I feel less guilty about it since my Dx.

I think you find your real friends very quickly, those people that truly care about you Understand, they accept that there are things you just can't do and don't make you feel guilty about it. They ask how you are and actually listen to the answers, even the parts you don't say.

They don't make you feel guilty for not calling or going out and are thrilled when you call and say "hey todays a good day want to do something".

They get that you can't plan ahead as much as you'd like because hey you didn't know today would be so good, but you need to take advantage now because tomorrow it could be gone.

Know that its ok and yes we've all been there more than we'd like. Some days we accept it some days it upsets us.

Hope you have a good day today!

Made a small shopping run today. Vermont exit one has an outlet area. Van Huessein has some nice stuff. I went in, found my size, and grabbed several styles, and colors. The attendant was very nice, but since all was on clearance, worried that I wasnt trying them on. I didnt bother to explain to her that to try them all on, and then switch back and forth, would wear me out too much. I just smiled and thanked her. Now that I am home, I did try them on and all but one fit pretty well. So, thats 6 shirts that I didnt have before. sweeet!

I need a nap now. :(

we are going through this right now with my eldest son and his fiance and her family, and their upcoming wedding, they dont understand why i cant stay longer or why the heat from cooking all day at their place is too much for me ect.... ect.... I actually texted him this morning and told him to do me a favor and look at what MS is and get his head out of the sand, well the word i used rhymes with glass, only thing i can figure is he is in denial, my so called friends dropped me like i had AID's ages ago when I was DX'ed, so that showed me how much they were my friends, as for feeling guilty i dont anymore, they can all, as you so poetically put it

BITE ME:yikes:

My two best friends (and only friends) pretty much quit talking to me after I got diagnosed. One lives in another state, and she's got 4 kids, so I can understand that she'd be busy.

My other friend has tried, she'll email me about meeting up to go out for lunch. Then the date for the lunch will come and she hasnt emailed me back or called me saying when and where. But, she does have a kid, and a job, so I can understand that too.

It just sucks that they dont even call me anymore.

Only person who didnt disappear on me was my boyfriend. (yay!) He's been so nice, and a lot more understanding than other people. Might have something to do with him being pre-diabetic and he at least understands the whole "not feeling good" part of the MS.

He's been after me a bit to try to work out and build up some muscles and for me to at least try to keep in better shape. Good idea, but the lazy person in me is too lazy, and that's not from the MS. I'm just a big procrastinator.

Having MS has been a great excuse for not doing things that I dont want to do. Lately when I've used it as an excuse tho, it's been true and not just me fibbing because I didnt want to do something.

I'm so tired! Combing my hair makes my arms hurt. When I take a shower, just drying off and combing and drying my hair exhausts me. (I'm going to go get a shorter haircut soon) My left hand is numb (not totally) but my arm and hand get so tired and sore that even my favorite hobby of crocheting has been a chore lately.

I'm about ready to go and take a nap in a few minutes (I've been up since 11am...time for sleep again apparently) I'm actually happy the cleaning lady slacked off today and didnt show up like she was supposed to. Now I can go take a nap and dont have to listen to the vaccuum cleaner.

I know what you mean, DM. I love my caller ID. Sometimes it's just easier to avoid those people than repeat (in vain) the same thing for the millionth time. :rolleyes:

My best friend from the 3rd grade, lives just 6 blocks away and I've seen her once in the past year.:rolleyes: What can I say, I'm no fun anymore.

She has been ill and she does keep in touch by e-mail and calls once in awhile. But we used to share everything...her 3 kids call me Aunt Sally...still, and they are all in their 30s.:)

I hate this damn disease..:mad:

I don't think it's denial, honestly. I think it's just they don't understand and it's a wedding and they want everyone to be involved. It's great that they want you all involved. :) Your son, they know. They are probably just getting to know you. It will take time for those who don't get it to try and understand. If they don't, just go about your way doing what you can and let it ride. It's not worth it in the long run and in reality, your son will have to live with them the rest of their lives as long as he's married in the family. Maybe it would be better to let your son try to explain to them how your ms affects you so not to cause tension in the family for him.

Jim and I explain to people and if they still don't get it we just pass it off as ignorance and go about our way. It's much easier that way. We have a wedding to go to in June but I explained that it would be easier for Jim to just come to the after wedding bonfire because being up all day would wear him out. Our son is in the wedding and we really wanted to go but knew it would be hard on Jim. They understood and have me helping get the bonfire ready and Jim can stay home and rest until it starts. We got lucky.

Myself, I don't try to explain anything. If I am to decline, I do not give a litany of reasons, I simply say that I choose not to attend/accept/appear. If someone doesn't like it, well, they'll just have to deal with that themselves, won't they.

My friends are right there and I do make an effort to invite them for impromptu coffee, etc., even if it's just a matter of giving them a chance to decline my own invitations. It at least tells them that I do value them and want to spend time with them.

Social interaction is a two-way street as is all communication. It makes no difference why you will decline, why feel obligated to offer huge explanations?

I avoid using MS as my catch-all excuse; sometimes, I'm simply not interested in doing certain things. Conversely, sometimes getting dressed is too overwhelming. They don't need to know precisely why, I just ask for a rain check. No harm, no foul.


Wow, Frank. :eek: Way to boost your son's outlaw reputation among his new family members! :eek: I'm not sure it's fair to expect others to "get it" when we, ourselves, barely do.

I have to wonder about your "so-called" friends' true reasons for turning away if you actually treat people like that!:eek::eek::eek:

Good advice, Sandy. I've been talking to my son's future MIL and she is trying so hard to be understanding of my MS. His GF spends many a night here at my house since she works only a couple of miles from here so I know she tells her Mom how things really are for me....which I don't mind. It helps in fact. Her Mom actually said to me today that she doesn't want me to feel left out of the wedding planning but doesn't want me to feel obligated to do things that I know I just cannot do. She asked me how I'd prefer to handle this.....which I thought was so nice. I told her as long as she understood when I had to decline an invitation she could just include me as she would everyone else.....I'd just have to play it by ear and take things a day at a time. She really is a sweet person and is trying hard to be respectful of my limitations.

Frank, if her family isn't familiar with MS this will be a perfect time to educate them......but you'll just have to be patient and understand that even for us MS was a mystery when we were first dx and even now we're still learning about it. Give them a chance and you might be surprised! Good luck!

hugsss all
even undx, I know what you are saying, hard to balance what I can do, and how much I can do, with what I need to do for my own health. UGGG frustrating part right now is, somedays I get thru working and hardly can do with the kids anything...that sucks!! hugsss,sarah

I can relate. I don't have the energy for socializing. The thought of spending the evening out making small talk just makes me cringe. I only have energy for my daily chores, work and the dogs. My partner keeps telling me that I need to get out more, that it isn't healthy to stay home all the time. First of all I do not need people around all the time, I do not need to go out, I am not and never have been a social butterfly. I am perfectly happy to putter around and occupy myself. it does not bother me in the least to be alone. I have a couple of close friends and I have my family. What else do I need? Plut I just don't have the energy for obligatory small talk.

Obligatory Small Talk!!!
 

Wow....very interesting phrase! It might go right along with obligatory listening!!!

I am terrible I guess, but.... some of my very closest friends, I can listen to ALL day long and it is very relaxing. BUT THERE ARE CERTAIN PEOPLE... that just go on and on... and I physically get a head ache... it's torcherous !!!

Am I alone???? :p

Nope, your not! :p

A pleasant thing happened this morning. I wasn't feeling well yesterday, and then due to a thermostat issue, it was so hot in the sanctuary that I skipped out after my Bible study, before the Worship Service.

I had to email some information to my pastor's wife, and I included an explanation of why I hadn't been in the service. This is part of her response: "we don't EVER want you to feel guilty or like you have to explain yourself to us."

You know, that kind of made my day. :D

B2Y wow, what a great response hugssss,sarah

I haven't read all the thread and I don't have MS but I identify with everything others have said.

Anyway, I just loved this! I'm the same way so I got a really-appreciated chuckle out of this. Every day is our birthday this way, isn't it? :yahoo: :hug:

unless you have been there, its hard to explain just how exhausting it is just to keep up your end of a simple conversation. The polite give and take, ebb and flo of it all...bah! I just cant do it. I was once a chatty cathy, and now I am sitting in the corner staring off into space after 20 minutes. Im not the girl I once was.

One of my friends called me today and it was a challenge to stay on the phone as long as I did. You'd think I'd love telephone calls......don't have to leave the house to have them; can wear whatever I want; can lay on the bed if I want to. Nope......even holding the telephone for an extended period of time wears me out. And having to pay attention to what the other is saying.....and remember things I'm asked about......it just wipes me out. And she's constantly asking 20 questions about everything so it's doubly exhausting. Sometimes when she calls I just don't answer because I know what's waiting for me on the other end! She doesn't have MS so I can't expect her to know how it is. It's just hard to explain how just talking on the phone can be so tiring without sounding like I'm......whining!! :eek:

Exactly my point!