November Chit Chat Check In

[nuthatch]

Oh Virginia, I know how difficult and painful all this is for you. While you want to keep the closeness with your family, it's just too much to keep up what was once easier. I'm glad that you expressed how difficult it is for you now, especially trying to manage on your own.

Please do what's right for you. They will understand. You are a very special person.
Hugs.

[Lazarus]

I'm proud of you, Virginia.

It takes a lot to be brutally honest with an "accept it or not" statement because you really don't have any choice and you feel it's time you shared your reality with others.

I know it's very true that they cannot "see" your limitations and just assume you are well able to do certain things because you always have and you "look" like you can.

I try to remember to give people a bit of a break because they truly know not what they assume. I'm sure we're all the same, why would we ever assume someone has unseen limits unless we're told or can see it for ourselves? Human nature.

It's very hard when I'm struggling though to keep this perspective. Like you, I need to put my foot firmly down so everyone is clear. We don't always need to give details, but we need to be clear about our needs, be it being asked if we're able to do certain things every time, asked if we'd be comfortable in certain situations, and for people not to be put off if we must turn them down 9 times out of ten...we still want to be asked the 10th time in case we may feel up to it.

Sometimes it is hard to be lighthearted when we feel frustrated that our bodies and minds are not cooperating with us, and we already are near tears as we battle ourselves. I truly don't think anyone has a clue how difficult some simple things can be for me to do, and how proud of myself I am if I'm able to accomplish them, or how weepy I am if I'm just not able to do them. It's not my fault if I can't, nor is it my glory if I can, it is the nature of MS. The struggle inside to continue to push myself in spite of all the times I'm unable is what I'm proud of, not turning inward and giving up. Trying again in case the next time is better. Not every time, but keeping my options realistically open.

It is a fine balance to continue to be proactive, yet not set myself up for continual failures by setting my goals too high.

Neither too high nor too low. Try this with a disease that fluctuates daily, I'm surprised I'm not more messed up than I am!

Feel good about asserting your need and some limits. I know how Sunshine feels about people who are unable to navigate this roller coaster and new limits we are faced with.

We have one life to live in these imperfect bodies, and we have been given an overwhelming test to see if we can remain balanced while standing in the middle of a moving seesaw as we try to explain how others can best engage with us in this constantly moving environment.

It is certainly a challenge.

Brava for your firm stand today! I hope you feel a little bit lighter for having spoken your truth.

Thank you for taking the time to write such a detailed response. I plan to copy and use it (if you don’t mind!). Superb explanation.

[Lazarus]

You got that right. I'd love to die laughing.

Well...except that it might make everyone around me have second thoughts when they begin to break out in uproarious laughter after that.

It might act as a deterrent. "Remember Sue!", they'll caution. LOL

I keep chuckling at this...my husband asked what I was laughing at and I told him I was just remembering something I read!

[Virginia]

I am finding that life is much harder when there is no husband, no sisters and just sisters-in-laws who really don't care. After all, they are much younger than I am, have their husbands, kids, dogs, along with good health. One even has her Mother and Father still. They both have large extended family on their side so why should I matter in the overall scheme of things? I guess it is too much to expect that I really matter, but I do have the feeling that they think there is nothing wrong with me and yet there are visible things that are there. My walking is one visible sign, my hands not working right (if they paid attention) and at times there are other things that can be seen. This is why I feel they don't care, because there are visible things with me. I just feel that I am not important enough to matter and it is so hurtful that my brothers always go along with what their wives say regardless of my feelings.

I am just down right now and I know it is only me that I can turn to in order to come out of it. If you have a loving family be thankful. If you even have kept your close friends be thankful. Even on this forum I think most people have either spouses, children or family they can turn to.

I am thankful for all of you and I have had some really good responses. Nuthatch, I don't feel special.

Laura is due to come in 1/2 hour, if she stands me up today I will wring her neck.

[agate]

Virginia, it must be terribly hard to have been married for many years and be used to sharing your life with that person--and then to find yourself without someone who probably seemed like an extension of yourself. I hope that your brothers and their wives will remember that you're having to deal with situations they probably haven't a clue about.

If they don't seem to be getting that, probably the best thing you can do for yourself is to act as if it doesn't matter to you much at all. You can take these people or leave them. You don't really feel that way but why let them know you're hurting?

You really wouldn't want them to start being more inclusive just because they feel guilty about you or feel sorry for you, I'm sure. I hope that none of them chooses to debate with you about the message you sent. I hope they think about it and take steps to change a few things in your favor--quietly, without arguing.

[Virginia]

Agate, my middle brother took that step to try and make me feel better this afternoon. The only thing more I could have asked of him was that I would like to hear him say it in front of his wife. He was away from home and called from his car. He was wonderful in every way. He said he would always be here for me in any way that he could be, that all I had to do was let him know what I needed. He still insist that they want to keep coming over to my side of town every Sunday evening to eat. He has agreed that I can feel free to say that I do not feel like going. He said just call him and he would understand and convey it to the others.

We talked for quite awhile and he told me how much he loved me. He said he had loved my husband like a brother but he said "as much as I loved him, I still love you more."

Laura did come today, and I am grateful for that. I still have a lot of dusting to do and one more load of laundry, plus I have to put the clean linens on the bed and I also have to vacuum the floors. She did my shower, the kitchen counter tops, the sink and one room of windows and blinds. That is a help. I am thinking of having her more hours. What I would like is 4 hours every other week and two hours the off week, but I am not sure I can afford that. I am going to wait until after the first of the year to see how things go with medicine, etc.

I know I am lucky to have a brother who would call me and say those things because so many men would not. Well, that is one out of the two here. The third one is not involved because he lives too far away.

Thanks for listening.

[SuzE-Q]

You have a good brother, Virginia.

[Sunshine]

A perfect outcome virginia. Hooray for you for speaking up!

[Virginia]

Thank you Suze-Q and Sunshine. I am glad I spoke up. Maybe now I can say I feel bad without having him say "what is wrong?" That has been the case when I try to cancel and it has put me under a lot of stress. Now, hopefully I can just say I am having a tired or not so good day and let it go at that. That is what I am hoping for.

[nuthatch]

So glad your brother called you, Virginia. Brothers seldom express their feelings for/to their sisters, at least that's my experience with my four brothers. Sisters need to hear that occasionally! And doing it in front of someone else . . . well, don't hold your breath waiting for that.
(Howie, I know you tell us you love your sister, but I hope you tell her that too!)

The cold front has arrived here, just in time for Thanksgiving. It started snowing at my daughter's at noon today. They are expecting more than a foot of snow, so had to cancel plans to travel to the Bay Area this weekend due to bad road conditions. My daughter had a hard time getting home tonight because of an accident/pile-up blocking the roadway in both directions. It's especially icy and most people have not put studded tires on their cars just yet. They are also expecting the electricity to go out (it always does with a big storm) so are preparing for that.
We'll just get rain, but there is a slight possibility we get some of that white stuff. The last time it snowed was over 31 years ago, right after we moved here from Southern California. The kids loved it!

Hubby is to pick up DIL and Everett at the train station tomorrow afternoon (Everett's first train ride!). Son is driving up early on Thanksgiving day. It will be nice to have them here.

Thinking of all that I am thankful for lately. This forum and the friendship of it's members is high on the list. Thank you all for being here and supporting each other.
Happy Thanksgiving!

Joan

[agate]

[Howie]

Nuthatch, I tell both my sister and brother, "I love you".

[Jeanie Z]

:) Andy came this morning with coffee and donuts. He gave Lacy a bath then walked her. Lacy adores him.

Then he changed my linens and mopped all the floors. I am glad to have all that done. He is such a great son.

He bought a huge pan and is making green bean casserole for the crowd at Jim's. Torre is making cornbread stuffing and apple cobbler. I sent Jim ,money to get everything at Publix.

Happy Thanksgiving everyone! Jeanie :)

[agate]

Sounds as if your crowd will be well fed, Jeanie!

[Virginia]

Nuthatch, glad son and DIL and especially Everett is there with you for Thanksgiving. A train ride would be a big deal to him I would think. Sounds like a very cherry Thanksgiving at your house. Post pictures!

Howie, you are a good brother, but then I kind of figured you were.

Jeanie, sounds like things are coming together for you to have a nice Thanksgiving. You have such good sons as we have noted on here before. Andy does so much and I am sure Jim would do more but he has a wife and that complicates things. However, I know that Jim does do a lot when he can.

Agate, that is a great picture you posted. Hope that turkey doesn't get cooked for anyone's Thanksgiving dinner.

Ann, has been quite. Peter is probably not working over the Holidays or they might be at her Mom's.

Linda, Sunshine, Suse-Q, Ssusan and all that I missed - Happy Thanksgiving!