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Advice on how to cope

After years of wondering I have just found out that my spouse has MS. It seems that her ability to move and interact day to day is different. It seems frustrating to me because I see her doing what she wants but never time to cook, clean etc.

What is a spouse to do? She says that she does not have the energy and that I don't understand. She is right!
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1207048 tn?1282174304
When I was first starting out on this journey, and having overwhelming fatigue, I was told the Spoon Theory. You can google to find the full story, but here is it in a nutshell:

Imagine you start each day with 10 spoons. Every time you have to expand some effort it will cost you a spoon. Do you need to shower in the morning? Give up a spoon. Get dressed, give up another. Say you have an overly stressful day at work, that will cost you two spoons. Need to pick up some groceries? One more spoon. And on and on, and that is just a regular day. What if you had something special coming up? A trip to the zoo with the family could cost you 6 spoons at once. So, what if you know "Ok, we are going to the zoo in 3 days. I'm going to try to save my spoons until then so I have extra for that day!" Oh, but, sometimes you can't carry over your spoons...but it is still worth a try. Or, what if you are extra stressed, or you didn't sleep well, and you start off your day with 6 spoons instead of 10?

Basically, things are now going to be different. Priorities will have to be re-evaluated. Do you want a wife who will use her spoons on cleaning and cooking? Do you want her spoons to be used in caring for the children if you have any? Honestly, which would you rather energy be spent on: doing dishes or being intimate? Because, at this point, when every little amount of energy is having to be planned and accounted for...that means that even intimacy is no longer spontaneous. It stinks, big time, but it is what it is.

Now, this does not mean that your wife will be able to do only "what she wants" and never do any of the daily chores and responsibilities. But, IMO, in the newly diagnosed phase I'm sure there are a lot of emotions that you are both having. I think that an open and honest talk, not confrontational, would be a good first step. Maybe you can figure out a plan for how to deal with the responsibilities that need to be done.

Good luck!
~Jess
Helpful - 0
572651 tn?1530999357
Hi Travis, You have gotten a lot of good advice and hopefully you will take time to really digest all of the words that have been written.

My  energy only goes so far - I work outside our home.  When I get here at the end of the day, I am usually pretty spent.  I do spend  no where near the amount of time necessary to keep my hose spic and span.  And we eat out a lot more than we ever did before.  Both of those conserve my energy.  Unfortunately a lot of time that I am up cleaning or cooking,  I can only think about sitting down.  

I can go for hours sitting.  I spend a lot of time helping on the forum here because this is one thing I can do that doesn't require a lot of energy.  My husband had trouble understanding this at first, but now he gets it.  

Please check with your wife's doctors  about counseling services/support groups for partners.  The NMSS also sponsors couples retreats to focus on the issues of living with MS- check into when the next one will be offered in your area by calling your NMSS office.

Don't let your resentment and doubts continue to grow - if left unchecked it sounds like it will only get worse for you.

be well, Lulu

Helpful - 0
1045086 tn?1332126422
I think Tonya has posted some really good and accurate information for you Travis.

I'm also going to tell you this.  YES, I sometimes use my energy for an activity I enjoy rather than the cleaning or cooking I know I should be doing.  Like your wife, I'm recently diagnosed after years of feeling like crap and berating myself for being so "weak".  I keep thinking that soon I will be rested enough to resume my former routines around the house.  I can envision myself doing it all.  Somehow it just never happens.  

I save my energy to go to the job that helps pay the mortgage, provides medical benefits and gives me a very important mental/social boost.  I rest the morning before my afternoon shift starts.  I rest the entire day after.  

Frankly, right now I feel like I need to be selfish sometimes.  Maybe I'll be able to handle sacrifice better when I've lived with this for a few months.

My suggestion:  Offer to do things around the house TOGETHER as a team.  I can't seem to convince my own husband.  Maybe I can influence your wife's.

Keep on lovin' each other and talking.
Mary
Helpful - 0
560501 tn?1383612740
    Travis, I can certainly understand your emotions. It is not easy on you this I know.
I do have a couple of questions if you don't mind...just to try and help to understasnd the history of her dx.  Are you saying that she has had MS and you just did not know?
Or are you saying that she has been ill for a while and now just finally got a dx?

     Is she on any medications?   Started on DMD's yet?  Do you have any nearby family or close friends that are near by for help and / or support?  I hope that you stick around for a while so that you can help to understand things a bit more and also perhaps someone else here on the Forum can help direct you to some good support groups.  Here is a piece from the National Multriple Sclerosis Society that may help to understand a bit more.  Hope this makes since and helps in some way.

Be Well,
~Tonya

“What we find hardest to deal with is the constant
unpredictability.”
People with MS don’t know from day to day, or even
hour to hour, whether they will feel well or not.
Symptoms of MS typically fluctuate. Will the person
with MS be able to join in the family’s activities?
Will special help be needed? Will some hoped-for
event have to be canceled? This unpredictability is
frustrating. It can lead to misunderstanding and
confl ict: Is the person really so unwell? Should he or
she be pushed or left alone?
Unpredictability makes it hard to plan for the future.
Should the family buy that new house, or does it have
too many stairs? Will there still be two incomes to
meet the mortgage payments? Should the person with
MS change jobs or stop working?
Uncertainty may be easier to live with if it is
expected. Th ere may be less disappointment when
a plan falls through if an alternate plan has been
made—just in case.
Helpful - 0
987762 tn?1671273328
COMMUNITY LEADER
Hey Travis,

When i first read your post i wasn't sure if you were saying in a round about way that your wife is faking it!? Ummm, if thats what your saying, could you please bend over so i can give you a swift kick in the proverbial, its time for a reality check!

What do you really know about MS, if you want to know more please read our health pages, top right yellow icon of your screen. Another idea is to search out some of the issues that she deals with and read what some of our members are saying about it, it might help you understand better, eg Fatigue. Ask your self if you are the type of spouse who wants to know what MS means so you can help support her or are you the head in the sand type, ignore it and it isn't happening. if your the former, then please, please dont let her even get a wiff of that type of negative thinking, from you or anyone, it can be sole destroying.

Long before your wife got her dx of MS, MS was doing its damage, (how well is your cordless drill working before you discover its faulty battery?) I imagine she's hasn't got a lot of the physical issues for you to obviously see how the MS is affecting her, that would make it harder for you to understand what she's going through every moment of the day. So lets imagine you have to run the Boston marathon every day, your body is screaming that you need to rest but you cant because you have to cook dinner first, the next day the marathon is a little harder, the next harder again, its understandable that eventually you wont be able to gather the energy necessary to cook that blasted dinner, right?

How do you make life easier, and get dinner on the table when she cant, well its simple in todays world, your equal partners (right?) some days why dont you suprise her with a meal you've cooked with love and then wash the dishes with understanding. I cant imagine if she had been dx with cancer and not able, by the end of the day, to do what she use to do, you'd ever come up with these expectations from her, no you'd rally around, going above and beyond being the night in shining armour she needs, think about it!!!!

Be kind, be strong and be her night, she needs you!

Cheers...........JJ
  
Helpful - 0
Avatar universal
OK...so it seems that all I can do is grin and bear it and deal with the ups and downs from day to day? This will be a mental change for me...
Helpful - 0
560501 tn?1383612740
   Welcome to the Forum.
      First off I would like to say how sorry I am that your wife has been dx w/ MS.
It is a very hard disease to understand. It affects each individual in  different ways. Meaning not everyone will always have the same symptoms. Energy levels rise and fall throughout the day for each individual.

       Secondly, I would like to add that this is a disease where most people (who do not have a clear grasp of it and how it can affect each person) tend to think that just because we may look good, and are able to do things one day or one hour earlier...Doe NOT mean that we are able to do it later.

       Perhaps what you may also be noticing w/ your wife is that she "Conserves" her energy for things to do w/ the family, or shopping or whatever.......Then when it comes time to cook, clean, she is tapped out.  We that suffer from this Miserable disease are not like mosy in that we do not have 'Energy on Reserve". We have what we have for whatever particular day, hour, and then there is none left. Where as those who do not have a disease such as MS are able (even if you have worked all day and are tired) to manage to PUSH yourself through the day.

       There are some great forum's for spouses of individuals w/ MS. Another great place to look is the "National Multiple Sclerosis Society". web site. There you also may get some more understanding as to what is going on with her.

    I would like to close by adding....Having any kind of an illness can cause much strain on a marriage. Please do not forget to talk about your feelings and help to understand hers.... Heck since she was just dx...She may be also having a hard time trying to understand what is going on in her own body and why.   just keep your lines of communication open.

     You showed your first step in concern and love just by posting on this forum :)
I wish you both well,
~Tonya

    
Helpful - 0
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