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What do you tell your family?
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What do you tell your family?

Every year the day after thanksgiving I spend the day cleaning and putting up Christmas. And every year I scoot my boys and hubby out the door to go play...except this year :'(. My boys know I'm not well but they don't know why..hell I don't even know why??? What do I tell them?? How can I help them to understand that I need help this year?? I've kept them home and it makes me so sad! Last year and the years before is how it's been their whole lives! How do I help them to understand something that I don't even understand?
Amy
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You're in a tough spot because you can't even explain this to yourself let alone your family and children.  Until you get a name for what is wrong, you will continue to struggle with defining  your health to everyone else.  

Children are so resilient and can deal with the truth.  It's much better to talk to them about your health problems than leave them worrying about it being something so much worse, like cancer.  Left to their imaginations they can construct a pretty frightening scenario in their minds.  

There's nothing wrong with asking for help - you can't do it all yourself.  Right? Maybe it is time to start some new tradiitons  rather than giving them the day off find some ways to do a family activity together.

Its a tough spot to be in so it will require some creative  thinking.

Lulu




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I'm sorry things are changing around your holiday house this year.  Since this is new and you don't have a lot of information to share yet this could be a very iffy holiday for all of you.

Would your boys go for the chance to establish NEW traditions?  We so often want everything to be exactly the same every year.  In reality, it is great fun to do new and different things every year while holding tight to only a few of the MOST important traditions.

I think this is a great opportunity as your kids get older to prepare them for the idea that not all people celebrate the same way.  It will be good training (especially for the older boys) for when they meet the important people they might decide to spend their adult lives and celebrations with.

Maybe let them know you have loved doing it all for them but are needing to take a step back this year?  Ask them each to pick an activity they consider a priortiy.  You might just be surprised to hear what they consider essential.  (The things I loved most usually ended up being barely memorable to my kids.)

Maybe this will give you a great chance to work on holiday preparations as a family.  Maybe it will end up being a sweet gift for you to spend some one-on-one time with each child as you team up to 'get 'er done'.  Maybe a daughter-in-law of the future will thank you for taking time to teach her husband how to participate rather than always be served.

You might have MS.  If you do, the disease could change many aspects of your lives.  If you don't, something else will come along soon enough to challenge your existing concept of the 'perfect' family.  I understand the sadness you feel but want to caution you against allowing MS (or it's potential) to rob you of holiday peace and joy.  Please don't let your boys accept you as a helpless victim or MS as an unstoppable enemy with power to tear your family apart.

The best thing you can do for your children (IMO) is show them your example of trying hard to adjust and move forward as a unified family even though you DON'T understand or have all the answers.  Take some moments to remember and share fond memories of holidays past.  Then do whatever you can to make sure this one doesn't get labeled as the worst one ever.  They are all good!

I hope we hear stories of renewed excitement from active participants :)
Mary
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Talk about creative thought - Mary did a great job here expanding this idea.  I think we should remember these tips and apply them to everyone's family.
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I lived this nightmare for years.  I was determined not to let my sons know there was a problem.  I wanted nothing to mar their young years.  I made up my mind that until the last graduated from college....none would know.  Of course, we wouldn't know either as I wasn't dx until the summer before my last son was to graduate.  Now had he finished the program in four years he would have known nothing but he decided and asked for a fifth year!!!

At this point, we had to tell them.  We did tell them I was using a wheelchair for any distance walking.  We told them (as we had been told) that it was just a pinched nerve.  So, all of the boys were able to finish school without worry about their parents health.

My husband is no cook.  In fact was not introduce to the kitchen until my hands became too weak.  So, holiday foods were bought in party trays and simple things he could do.  Bakeries were for the best of Italian cookies mommy always baked.  It cost a fortune as we have a large family.

Once the cat was out of the bag, I went to my sweet daughters in law asking each to take a holiday.  My husband and I buy the foods.  They choose what they want to serve and do the clean up.  Not one has ever complained.  Believe me, I know I am blessed.

So that is my story on how I handled it.  It was kept between my husband and myself.  My sons had already seen more sadness from their "spirit" brothers...one losing his mother to murder, the other losing his mother to bone cancer.  I sure didn't want to add more.
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Wow ladies! Thank you so much! I have told them all, already....i had to when they seen me shaking, my 17 year old asked. So we sat them down and told them something was going on, we don't what, but something. Of course my baby (who's 9 ) :-) asked if it was cancer, we had to reassure him that no its not cancer, but for the most part they took it pretty good. What was difficult, well and still is, I don't look sick and because the tremors come and go, they don't always see the physical symptoms, or they cant feel my legs wanting to collapse after walking only a half a block to grandmas house, so trying to explain that with more activity the worse I "feel". But anyways..Lulu & Mary I took your advice, and for the first time in their lives my 12 yr old and 9 year old got to decorate the Christmas tree! It was wonderful to watch them...i never knew what I was missing all these years!! My 17 & 16 year boys hung the lights and I can say that my tree is for sure the brightest and best lit tree in the neighborhood!! I love our tree this year! And today they all promised to help me finish decorating and my oldest even offered to wrap all the presents..lol nice try I said! Mary, your thoughts gave me something to ponder as I try to live around this, this stupid thing, whatever it is. I'm not myself right now, and I highly doubt I will be the same..but now I'm thinking more of how can I involve my boys more into the things that I'm use to doing..hopefully it can be just as successful as last night was! :-)
Thank you so much ladies for your thoughtful advice! You really did help a mom make a very hard change that really did turn out better than I could  have ever dreamed!!
Have a happy weekend! I know I am!!
Amy
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Amy, thanks for giving me the "feel good" story of the weekend and letting Mary and me know that the advice worked.  

It is so hard to start redefining ourselves and our relationships, but being open and honest is so much better than hiding secrets.  Kids always figure things out so much sooner than we are willing to admit.  Sex, drugs, rock & roll and illnesses all come to mind! LOL

Keep loving your weekend,
Lulu
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Lulu, our family is open and honest...on most issues...including sex, drugs, n rock & roll.  I just chose a different option.  The title of the thread is "What Do You Tell Your Family".  That is what we decided to share.  First, we had no real dx until the last son was going into his fifth year of college.  I saw and still see no need to cause alarm.  MS is not fatal.  

Do note (and I wrote about it on this very board) when their father had renal cancer each son was called home tickets in hand by us.  We were honest and up front.  The doctor was not hopeful.  The chance of their father not dying from this type of cancer was very very low.

MS is not so serious.  You ain't gonna die of it.  Putting fear in young men hundreds of miles away from you at different schools is just foolish I think.  I was giving my own opinion.  I think it should be respected and not spoken of as "keeping secrets".  Hell, some kids have no idea of their parents finances or sex life.  Kids don't need to know just everything about their parents.

My opinion.
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The "explaining" part will likely need reinforcing no matter what diagnosis you end up with Amy.  When I walked my husband into the surgery center last week I had to stop and rest inside the door.  He turned around when he was about 20 feet ahead of me and called, "What's wrong?"  

I answered (admittedly with edge in my voice), "Some days this is as far as MS legs take me before I need to rest.  Go ahead if you're in a hurry.  I'll catch up when I can."  Duh!!  Like this is the first time my rubbery 9" shorter-than-his legs couldn't keep up.  Re-education........ it's a constant when limitations aren't clear or consistent.  

I used to work with a woman who was legally blind.  She functioned so well that many of us were surprised if she had to remind us of something she couldn't do.  Limitations that are sensory or endurance related are very difficult to explain to anyone who has never had the experience.  Sometimes I still find my own self thinking I should be able to build more endurance even though the idea has been tested and proven wrong on several occasions.

I glad we were able to offer you a jumping-in point for the holidays.  I asked you to share "stories of renewed excitement from active participants" in this holiday season.  Thank you for getting back to us in such a timely and enthusiastic manner.  It's an encouragement to me and I'm sure to others as well.  I'm glad some of your sadness of the moment has been turned around.  There will always be new challenges to meet.  No answer is right for every situaltion or time or person.

Thank you.
Mary
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Sumanadevii, the title may have been "what do you tell your family" but the direct question in the text was "how do I help them to understand?".  I just merely tried to share practical advice and I'm not sure why you feel you have to defend your own course in your life.

To each their own style and life - I'm just glad that Amy let us know that for her household this direct approach worked.

Lulu

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Lulu,

I am sorry if I misunderstood your post.  In it you said

"It is so hard to start redefining ourselves and our relationships, but being open and honest is so much better than hiding secrets.  Kids always figure things out so much sooner than we are willing to admit."

Since I had been the only poster to say it was kept a secret ...guess that is why I felt I needed to "defend my own course" of action.

And may I add, my children didn't figure it out any sooner than the doctors...lol.....
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MS sure isn't a one-size-fits-all, is it?  Today I went roller skating at a rink with my grandchildren.  I'm an advocate of use it or lose it. Or in my case, use it when I can.  When it's there to be had.

Who knows what next week will bring for me?  My fatigue levels fluctuate greatly.  It may mean the couch for me for a couple of days next week.

Some explanation would have to be given if children were under my roof full time.  There are symptoms that cannot be hidden.  The unseen symptoms take it's toll as well.

My youngest grandchild is just 6 and nothing gets by her.  She knows if I'm having a particularly bad day (as much as I try to hide it) and will ask about it.  It's infrequent enough that I tell her I just need a nap.  

The National MS Society makes available a pamphlet on this subject:
"Talking with Children about MS — Kids tend to worry when they know something’s up — even if Mom or Dad has no visible symptoms. Get some hints about how and when to begin talking about MS with your children and check out the special resources for young children and teens."
http://www.nationalmssociety.org/living-with-multiple-sclerosis/relationships/index.aspx  
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