[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.

[SallyC]

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..

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

[barb02]

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.

[kicker]

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?

[woodhaven]

(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!