Here is a wonderful article about "The Spoon Theory" (it is written by a lady who has Lupus...feel free to substitute MS...to her friend, explaining EXACTLY what it's like to have a chronic illness day in & day out)...the first link is to the paper copy of the article...

http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/

The second link is a video of the Author reading the article at a Lupus event...

http://www.butyoudontlooksick.com/xmedia-press/new-video-christine-miserandino-reads-the-spoon-theory/

This last link is to the website itself. Other than The Spoon Theory, there are other great articles. Off the top off my head I really enjoy the article about "my life being like a Roulette wheel" (it explains how people's lives with chronic illness is much more day to day & unpredictable & relates life to a gamble)...I also like the articles called, "Sick Humor", those are funny! The site also has tips on helpful living aids for the mobility challenged, in any way shape or form...It's a cool site!...

http://www.butyoudontlooksick.com/

Hehe! I sounded like a spokeswoman for the website above, but I'm so totally not! I just think it's very positive, inspirational site! :-)

Take care,
Stay sane!

Also, it was kind of interesting that the title of your post went with the title of the website! :-)

I'm praying that your family is given the gift of understanding.

Peace and blessings.

mamak.....I have been exactly where you are and I hurt for you!!! I lasted working full time a year after I was diagnosed and then I was forced to retire and that was 6 years ago. Now I can take care of myself, rest and do what is necessary to keep my house going a little at a time so that I am not always so fatigued to the max. I over do it a lot....you would think I would learn!!!!

"The Spoon Theory" is great advice to read and print out copies for every family member and put a copy on your frig.!!! It has been a hard transition for my hubby and we have had a lot of ups and downs. He understands and acknowledges my limitations now, but that is after MANY counseling sessions. That may be something for you and your husband to consider too. Maybe the whole family. It affects everyone of you.

Are you taking any kind of drug to help you with MS fatigue? If not, ask your doctor because there are different ones out there that may help you. I currently am taking Prozac and Wellbutrin. They take the edge off of fatigue and help me think clearer. It is not a cure, but keeps me out of bed all day. The heat has been hard on everybody this summer, but really affects those of us with MS.

Take care and vent when you feel like it because we understand here!!!!!!

Thanks for the advice and prayers. Oakenwood, just seeing your Avatar made me smile! I love it!
I had forgotten about The Spoon Theory, but have now printed it out and will take it home tonight to share (again) with the family. I don't think I would be approved for disability at this stage of the game, since I sometimes work a whole week with no sick time. I mean, I just don't think it would get approved. So I'll go home tonight and try to rest, then start again in the morning.
Oh, MSKC, I do take meds - Nuvigil and Cymbalta, plus pain meds and Baclofen.
Thanks again for taking the time to reply!
Kristi

I'm living your life. It's the "me generation," nobody helps around my house, yet they all want something of me. I totally get what you are saying.

My husband is very supportive of my illness, which I am thankful for so much. But getting the kids on board, comes more work. My husband and I will talk to our kids. You need to get your husband on board first. I don't think a copy of the spoon theory is going to help much. I think they need more education. Might I suggest you go to the MS Society web site and get some information about MS for your family. The National MS Society has brochures describing virtually every aspect of life with MS at www.nationalmssociety.org/brochures or by calling (800)344-4867. What Everyone Should Know About MS (suitable for the whole family), What is MS? and Living with MS are great brochures to give to anyone who has a lot of questions or gives you that "deer-in-headlights" look. Your family needs to be educated on this disease first and foremost. The first step in preparing yourself to deal with the reactions of others is to put on your teaching hat. If you want others to understand you and your MS, you're the one who's going to have to educate them.

Even though you may feel like it some days, your MS isn't written all over your face. Particularly if your dealing with any of the disease's less visible symptoms, such as fatigue, weakness, bladder problems, or cognitive changes, other people may not have a clue what's gong on with you or what you may need - or not need - from them. It's up to you to let people know when, and if, you need something from them and how they can be of the most help.

I'm not saying this advice is the magic bullet, but this is what I have had to do with my family to get from them what I do get today. I still struggle every day to get my kids to do more around the house, but thankfully I have my husband that protects and lectures the kids on my behalf because he truly understands. Get your husband on-board. Feel free to message me if you want to talk. Lynne

That's GREAT advice about the MS Society as swell & the brochures & pamphlets...

I really like the MS videos that they have on the societies website as well that explains ALL the ins & outs of what MS is all about...They are done very well, with a good mix of doctor info.& info. from the eyes of the people with MS themselves.

It's very cool the way they do their videos. They DON'T just feel like some sort of weird doctors instructional video on MS (which personally is not my thing & it really doesn't do much to make people understand what MS is truly like in my opinion)...

The MS Societies Website videos are very heartfelt, which I like & sends such a nicer msg. as a whole, while still adding in vital educational information about MS!

Take care,
Stay sane!

I know money is tight with everyone, but consider having a house cleaner come in every other week.

About 10 years ago my wife got to her breaking point. First off let me say she works very hard at work and very hard at home - every night. My point is that she is not lazy. Anyway, we have found that since she is forced to do more of "the man work", she needs more time (and energy). I think more than just the extra help, morally she feels supported in that she is not in this work overload all by herself. This freed up time for going to the kids school functions,etc. Part of my rationalization in hiring a house cleaner was that there are alot of stay-at-home moms. So basically we were paying someone to do some of the work she may have been doing if she were at home.

The nice part about a house cleaner coming in every other week is that every other week you get to start over - it is not one continous battle.

We have had the same house cleaner since then, but now thta the kids are gone, she comes in onc eevery 4 weeks. We pay her a little over $60 and it takes her about 4-5 hours, I think. This works out to about $13-$15 per hour. My wife's hourly wage covers that. It may be a wash for those hours, but it helps her maintain working 40+ hours per week.

Lynne: Thank you so much for your advice and support. Everything you said is true, and although my husband tries to understand (his mom had myasthenia gravis), he feels the extra weight and has no outlet. And my older kids are his stepkids, and they're only with us half the time. My ex- (their dad) is a neat freak and does everything for them. EVERYTHING! So then they come to my house and I'm getting on them to help, and my husband can't believe how lazy they are. But they've been conditioned 3 1/2 days every week to be lazy. And my little 4 year-old is caught up in all of this. We need some serious help! :) My husband nixed counseling, but I go on my own.
STEVP: Yours is the very best idea, and would truly solve a lot of the problems in the house. Unfortunately, we're working with negatives every month, so that's not going to happen. But you have put a bug in my head, and I might try to figure out a way to make it work.
Anyway, you have all helped so much. I'm going to try the video thing, and have a family talk to let them know what's happening.
Hugs back to all of you and wishing you a great weekend!
Kristi

Simpify my earlier message -give up 4 hours of pay so she could work and get paid for the other 76 hours. In the long run, this may be your only answer. If not, you may force yourself into a premature retirement (disability). Remember, we are in it for the long haul.

We may have given up other luxaries to pay for it. If we eat at home rather than go out, we have paid for it. We choose having the house cleaner over entertainment.

hi, yes i know how you feel. my husband is pretty good at realizing that i am tired and cannot do much, one time i was watching people on u tube describe how their ms effects them, my husband stopped and watched people describe their agony with me and he said " is that how you feel?!" and i said absolutely! and he said "wow! " , guess he did not realize.

Just thought of this...I watched a Youtube video a while back, that pretty much described MS to a "T". Think about having your husband watching this video, and maybe some others there:

http://www.youtube.com/watch?v=-BGBSsKBrbI

i just got out of something similar. i have been sick since i was a teenager and am now in my late twenties. my parents have literally watched me go from brief to longer bouts of relapse, adding a cane, then a walker, then a scooter for longer distances.

they watch me as i gasp in pain, they bought me a cooling vest this summer. they watched me fall, have sudden onset dizziness, bought me adult diapers...

up until the day of my dx, i was treated like a servant b/c i do not (read here, cannot) work. i just have too many bad days.

i think mother going with me to my appt and seeing other sick people helped her escape denial. they were my age, with walkers and canes like me. one was in a wheelchair his mother pushed, and younger than i.

she worked on my dad. they still hope i'm not "really" sick, but now i get to take care of myself. when i don't feel well, which is often, i get to rest. i do what i can, and i speak up when i'm not capable of something.

i guess i feel i've finally proved i'm ill and have a license to care for myself.

i wish you well. i believe almost all mothers and wives get taken for granted. that is self-centered on others' part... but with your being ill and having a job at work and another at home with this illness... they need to be informed and do their part.

i actually just thought of something. my sister came over one time and i had horrible tremors and could hardly stay upright. a month later, i walked with a cane.

she told my mother i was faking. sometimes the well remain in denial to protect their own sense of immortality. it is wrong and i called her on it. maybe family therapy along the way could help, whether through psychiatry, religion, etc.

Make an appointment with your neuro and haul all of them with you. Have him/her explain to them that you can no longer do it all.