[Blessings2You]

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.

[Riverwild]

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!

[Kitty]

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.

[Dejibo]

preaching to the choir. I want more spoons.

[FinLady]

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!

[SandyC]

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.

[weegot5kiz]

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

[Erin524]

Originally Posted by weegot5kiz

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

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.

[SandyC]

Originally Posted by weegot5kiz

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

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.

[AfterMyNap]

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.

Originally Posted by weegot5kiz

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

Wow, Frank. Way to boost your son's outlaw reputation among his new family members! 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!