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Just Not Getting It


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#1 annkd

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Posted 14 November 2006 - 08:03 AM

I have been diagnosed with scleroderma (etc.) for four years and several of my family members are still not getting my limitations. I have explained my situation over and over again. Given them books, articles, and so on.... The holidays are coming up and (please don't get me wrong, I lover him dearly) even my husband seems to have simply "forgotten" (?) "Chosen" (?),to notice how difficult and stressful it is for me to throw together dinners and get-togethers. I am especially having difficulty now with the colder weather. Any ideas? Already exhauted and it isn't even Thanksgiving....Ann

#2 Sweet

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Posted 14 November 2006 - 09:04 AM

Hey Ann,

I can relate all too well. This time last year is when I joined this group, because I wan't getting much support from family other than my husband. My mother in law is a bear, and she was giving me such a bad time. Well New Years Eve last year was the last straw for me and I let her have it. From then on, I had to be OK with the fact hat not everyone is going to "get it." I decided I was not going to give in anymore. Those that don't get it, can take it or leave it. If they truly love me, they will try to understand. I was my own worst enemy really because I wasn't saying NO when I should have been. I say it all the time now!!! And people are coming around to the idea. You are in charge of your life, not them. Take charge!!

Have you heard of the "spoon Theory" If not let me know and I will send you a private message to the link. It's a great way to explain to people what it's like to live with a chronic illness.

Hang in there,
Love Sweet

Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#3 Patty

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Posted 14 November 2006 - 10:21 AM

Ann,
I wish I couild give you ideas how to get them to understand but I can't as I am going through the same right now. My sister and 3 of her children are staying with me untill she closes on a house and I spend all my engery picking up after them when they are here.

I am suggesting for my home that we go out to dinner. I figure that we will spend the same on it as we would buying everything to have dinner at home. Maybe you could suggest that to your husband. Good luck Ann I know how upsetting it is to have loved ones ignore our illness.

Hugs,
Patty
Hugs,
Patty

If Life hands you lemons, make lemonade.

Hashimoto's thyroiditis, Limited scleroderma, Dermatomyositis. Diastolic Dysfunction, dysphagia, Fibro, restless leg. Lupus is a maybe.

#4 Shelley Ensz

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Posted 14 November 2006 - 10:22 AM

Hi Ann,

There are a wide number of approaches you can take. One is to stop waiting or hoping for understanding. Oddly enough, it has little to do with whether people really love you or not. The enormous range in how people respond to illness is incredible.

My approach would be to forget educating them, forget expecting understanding, and certainly let go of the idea that anyone will automatically think of being accomodating. Instead, focus on figuring out exactly what you need and then in asking for it, plainly and simply, without grudges or anger.

For example, figure out whether you ever really liked all the entertaining in the first place, or not. If you love the socializing but feel wiped out with cleaning and cooking, explain to your hubby that you want to continue with the socializing but need to adapt things to help prevent your illness worsening from the effects of stress.

From here, the ideas are nearly endless. Unless he is naturally Mister Clean and adores the thought of cleaning or cooking for the event by himself, offer to hire a cleaning service. Figure out ways to scale back the menu so that it is either all extremely easy to cook (or defrost) and/or order in deli or restaurant foods (with delivery, of course.)

The cost alone might encourage hubby to want to extend fewer at-home invitations or he may decide it is more reasonable to hold smaller get-togethers in a restaurant. Our local grocery store delivers a complete Thanksgiving dinner, for less than the cost of a restaurant meal.

It doesn't really matter how you solve the issue, as your approach might change a bit for every holiday or entertaining event. What matters is that you figure out exactly what you want, and don't waste any time (nor precious emotional energy) waiting around for your loved ones to "get it". There are very few loved ones who ever entirely "get it" unless they happen to suffer from exactly the same illness and severity. By letting go of that desire, and focusing on how we can help ourself and them adapt to the reality of our illness at the moment, we show them (instead of tell them) how to express their caring and make accomodations for flagging energies, while still enjoying life to the max.

Now is the perfect time to inventory all the "shoulds" that have accumulated over the years, and figure out your "wants tos" instead, and focus only on them, and on how to make them possible without worsening your illness.
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#5 Sam

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Posted 14 November 2006 - 10:24 AM

Ann this is what I am doing for Thanksgiving, My family is coming over and everyone is bringing a dish. I am fixing the turkey with my husband help. Plus a few little things. I buy cornet plates and I do use regular silver ware. As we dirty up a dish we work to gether to wash it and put it away right way. I don't make a fuss of making sure my house looks spectualr. If they don't like the way it looks too bad. My house is not a messy house. We have been doing this for years, and it helps on the person who is having it at there house. We all pitch in.

If you hubby and the others don't understand that it is too hard you then see if they want to do it at there house. But you make the plans on what everyone should bring. I hope this helps, Sam
Sam

#6 annkd

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Posted 14 November 2006 - 11:11 AM

Thank you all for your replies. My husband's favorie line is "don't worry about it, I'll take care of it". Sounds great, but what that means is he has the best intentions but work gets in the way, there is a game on TV that he can't miss, he waited too long to get the store to buy what he needs, and so on. I have told him what I need - can and can not do - suggested we ask others to help in bringing dishes and working on the timing of things so that I don't get overwhelmed. I know he gets frustrated - this illness is so unpredictable but I think the basic ground rules for my condition as it is now is pretty clear. I will work on taking all your advice and I appreciate your thoughtfulness. Deep breathing...and possitive thoughts! - Ann

#7 Shelley Ensz

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Posted 14 November 2006 - 11:55 AM

Hi Ann,

Well, sorry to say, but he's probably not going to change his communication methods nor his habit of over-promising and under-delivering a tad, just because you happen to be sick. It's probably something you could adjust to when you were healthier, by compensating for it with extra effort on your part, or last-minute troubleshooting. Now you're probably realizing that approach isn't going to work anymore, since you don't have the extra energy reserves to tap.

The worst thing would be expecting him to change, since odds are fairly good he had a pleasant way with good intentions and promises long before you got married, and that he has other sterling qualities that offset this little quirk. Therefore, it would still be up to you to compensate for his pleasant but slightly unproductive approach. Perhaps by scheduling more, expecting less, and not asking for his permission for people to bring dishes (just get on the phone and ask them). You can embrace the idea that he needs some R&R and time to watch the game, and have a cleaning person come in to handle some of the chores while he is relaxing, or recruit a relative to help a little beforehand.

We take a more radical approach in our household, often scaling back to a bare minimum that many people would find shocking. Our usual plan is to go out to eat for holiday dinners, even if it is just the two of us. And we always have a Plan B in case either of us don't feel up to going out, such as a roasted chicken from the deli. Our Plan C, which we frequently indulge in, includes scaring away all the relatives, staying in our pajamas all day, reading and listening to music or playing board games, and eating whatever happens to be on hand (cereal, anyone?).

The important point is that we are together, we are relaxed and we are enjoying each other's company. So we simply lower our standards to whatever is right for us and our health for that occasion, which is about the only way to cope since both of us have chronic illnesses (and he is on the lung transplant list.)

Perhaps the most important point is that we joyfully and proactively lower our standards, with no apologies to anyone, putting "rest and relaxation" at the very top of our To Do list. Then, if we manage to not achieve anything else on the list, we have still done the most important thing of all. And somehow the world still revolves on its axis, even if our holiday celebrations are different than they used to be.

If anything, our celebrations are happier and more pleasant now, since we have so drastically relaxed our holiday expectations, on ourselves and on each other.
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#8 janey

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Posted 14 November 2006 - 12:35 PM

Ann,
Your situation is so real to all us. Shelley summed it up so well, but I thought I would share with you how I handle the holidays and the daily chores of life in general. Number one - I got a housekeeper, and there was NO discussion on that one. My house needs to be clean and as dust free as possible and we just weren't keeping up with it. My housekeeper comes in every other week, and it works perfect. For the two holidays - the actual days - the families pitch in and it's like a "planned" pot luck. One person plans the menu (that could be you), then tells everyone else what to bring. My husband or his brother handle "the meat" by either grilling, smoking or, as one year - deep fat frying a turkey. That was an adventure! And the BEST part - the kids do the cleanup. As a results of this planning - I really don't do much. Everyone is involved, everyone is contributing and it always seems like everyone has fun.

It's been almost 4 years since I started getting ill and dealing with all the different reactions and interactions has been difficult. I have FINALLY learn to accept the various ways in which people treat me. A couple of weeks ago we went to my husband's family reunion. I've known these people for almost 40 years mind you and I love them all very dearly. However, out of twelve people - ONE person asked "how are you doing?" I know that it's not because they don't care, but because they are the type that truly believe "if you don't talk it, it will go away or not exist." At one point in a conversion, I said "scleroderma" and you would have thought I said a four letter curse word by the reactions on everyone's face. It was sad, but not for me - I actually felt sorry for them. It's like they think I have changed, whereas I'm the same person. It's my lifestyle that has changed. Hopefully one day they'll see it but in the meantime - I'm moving on. :D

I hope you have a very enjoyable and relaxing holiday. Let us know how it goes.
Big Hugs,
Janey

#9 Heidi

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Posted 14 November 2006 - 01:25 PM

Hi all,

This has been a great discussion. I know that I am guilty of having way too high of expectations and place way too many demands on myself. I am already feeling really fatigued (just haven't bounced back from the trip I took last week for my husband's family reunion) and have been worried about the holidays. After reading all of these posts I am going to very clearly let everyone know that they are expected to help and I am not going to do it all this year!

In fact, after reading this I turned to my husband and told him I didn't mind having the whole family over and doing all of the cooking, but I didn't want to have to do all the clean up this year. He just looked at me and said, "consider it taken care of". I couldn't believe it. So, I said, 'But I don't want you to have to do it either" and he said, "I said, consider it taken care of!".....so we will see.

Warm wishes,
Heidi

#10 LisaBulman

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Posted 14 November 2006 - 02:44 PM

Hi Ann,
I think most of us are in the same situation with someone in our family or that is close to us. My husband has the "choose to ignore and everything will be ok attitude". So when I am not feeling well or just wiped out I sneak off, lay down and close the door. I just let him deal with the kids and stuff.

This might be helpful: The Spoon Theory
http://www.sclero.or...-to-z.html#time

Hugs,
Lisa
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#11 barefut

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Posted 14 November 2006 - 04:15 PM

One good thing that has come out of me having this disease is that I learned how to say no and actually feel good about it.

"No" is an empowering word and I learned that people who liked to take advantage of me for never saying no, now have a new respect for me because I do now. And then there are those people who just disappeared - what does THAT tell ya ;)

It was really hard at first because I was a people pleaser. I really, truly enjoy helping people. I guess I still am a people pleaser but not at my expense anymore.

After I was told I had lupus, (misdiagnosis) I knew my pain wasn't in my head and I had a legitimate reason to say no, not to mention a right to feel good.

It was like a slap in head one day. I thought wait a minute! These people should be doing these things FOR ME not the other way around!

Like I said, it was hard at first and it didn't happen overnight. It took practice and now its easy. I stop, think, look at my calendar, and if I'm still not sure I say, "I'll get back to you." Sometimes I'll say well, I've got nothing going on, on that day at the moment but I never know how I'm going to feel when the time comes so it's hard for me to make a commitment that far out.

Now that I've mastered "No" I need to keep working on mastering, "I could use some help" THAT'S the hard part for me now.

Best wishes and Good luck to you,
Love, Barefut

#12 annkd

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Posted 15 November 2006 - 08:09 AM

I have been absorbing all your wonderful suggestions and personal situations. I am guilty of not being able to say no; however, you will be happy to know that I asked my mother-in-law for help and she said "of course, you can't do this all yourself". When I told my husband, guess what he said (gulp) "but I can do this all myself" (silent scream). I told him that was a nice thought but I want the help. Oh, I have read the spoon theory. I have shared that with several friends. Shelley, you really have your head on straight. It should be about just being together. I will try to focus more on that then making everything just right. You'd think that I'd be further along after four years. I realized that after my first post that this is really a life lesson issue - our lives have changed and I need to work on making the best of my situation. Sometimes my pity parties last too long! Thanks everyone. - Ann

#13 Sweet

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Posted 15 November 2006 - 12:39 PM

Hi Ann,

Wow, sounds like things are coming along. I'm so glad your mother in law was so ready to help! Sometimes, we just need to ask.

Funny also how our own attitude changes isn't it when we feel we are getting the support we need.

Warm hugs!

Sweet A.K.A Pam or other way around lol
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#14 Shelley Ensz

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Posted 15 November 2006 - 03:37 PM

Ann, congratulations on asking for help! What a wonderful change it will be for you, now that you realize you can make positive choices that will enable you to adjust better. I can see you are on a wonderful new journey!
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#15 WestCoast1

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Posted 15 November 2006 - 07:06 PM

Any ideas for a stress free Thanksgiving....well I like the spoon theory, someone mentioned here already. I wish that my family understood as well, and I mean REALLY understood, but when it comes right down to it, I am the one shopping, I am the one cooking, and I will be the one to do the cleaning.

I guess I have come to an understanding within myself that I can only move at one speed and if I am tired and dont entertain well, than thats all I can give. At this point in my illness if that is all the understanding I get than I am happy with that. there are too many other things to be happy about and that make me smile to be bummed about the other "stuff".

So I hope that my hubby does the dishes and that my kids behave well and that I feel good, but if not well thats life........
*WestCoast*

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