Multiple Sclerosis (MS) Support Group
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I just can't get my family to understand the severity of my illness. The pain, the lack of energy. I still work full time. I still walk without a cane. But I hurt so much of the time. I get tired walking from the parking lot to the store, let alone doing the shopping - yet I have to remind my husband we need to go shopping. We need this or that at the store. He still assumes I can do it. Or little things like getting up to let the dogs out over and over. I have to remind my older kids - let them out, help your little brother, whatever it is. I'm still expected to do so much at home - cleaning, dinner, etc. Things that are easy for most people. They exhaust me. And then I have to go to work and be able to FOCUS. I'm at work today, and truly need to go home, but don't want to because my husband's home with my young son, and I know I'd end up being busy, doing things that seem like they wouldn't sap my energy, but they do! So here I am at work, I feel like bursting into tears because the pain is bad (typing hurts), and I'm soooo tired, and I know if I start to cry I won't stop. I know it's partly my fault for not asking, or that I should just NOT do these things, but how do you watch your house fall apart? My daughter wouldn't walk barefoot on the floor the other day because it's too dirty! I can't clean it - I physically CAN NOT clean it. I've told them all it needs to be done. But nobody does it. And if I ask - whining, moaning, bitching. I want to run away!!!!
Okay, sorry for the rant, but had to get it out. Anybody know of a good book/website for my family to understand how serious this is? They just don't get it. Thanks, all!
Okay, sorry for the rant, but had to get it out. Anybody know of a good book/website for my family to understand how serious this is? They just don't get it. Thanks, all!
Talk to your husband when you're feeling strong, when things are good. You're more able to get your point across when you're calm enough to discuss with him.
The other thing you must do is realize your energy is like money in the bank, there's only so much there. Attack the most important chores first, then work down the list. If something has to wait until the next day, oh well!
Most important, stop making your family feel they make your life worse. They can, and will leave you all alone if you don't stop that now.
I still struggle with the stupidity of others at the age of 55 years. I get very disgusted with this disease.
My husband and I were trying to plan a trip to Yosemite for a few days. I realized not long into this process of advance planning that it was unrealistic. I couldn't drive 9+ hrs. for anything and I know it. We had to give up on this idea and are trying to come up with another plan that is an easier option. We have not been on a "vacation" in well over 15 years now. :(
I hate this disease. It takes all it can get and gives nothing in return. Boo hiss on you MS. Oh how I hate you!
Best wishes during this tough time,
EP
Thanks for all your replies. I will show at least some of the responses to my family, and can't wait to watch the youtube that somebody mentioned. I love you all, my MS Family!
Kristi
The "spoon theory" is great explanation of what it's like for those who are not self-absorbed. All too often though, we all get into our own little "ruts" in family dynamics. Your husband and your kids are used to you being who you have always been to them. That's the thinking that you have to break. You have to stop covering for the things they do not do. Rather than harping on their letting the dogs out, let them start taking some responsibility. Tell them from here on in, if they want dogs, then they need to take responsibility for them, to feed them and let them out. What you need to do is stop covering for everyone. Don't harp on them about the dogs needing to be let out. Once one of the dogs makes a mess on the floor and one of your kids has to clean it up, they'll get the message.Same thing with your husband. Start making him take responsibility for some of the shopping and the cooking. There's no reason he can't learn to cook and see that your kids do their chores. The thing is YOU have to back off and make them do it. If there's no groceries in the house, your husband will notice and he'll go to the store. If there's no dinner served at the usual time, he'll see that if he and the kids want to eat, they better start cooking!
I pretty much raised four kids myself and kids will do nothing if you allow it. The same applies to your husband. If you are always doing things for him that he can do himself, why should he lift a finger?
It'll be a pain for you to have to sit back, do nothing and watch as they figure it out. In the end though, they will. Let that floor get dirty. If your daughter doesn't like it, show here where the mop is kept! Remember too, the more responsibilities you give to your kids now, the better prepared they will be when the time comes for them to live on their own when they have no one but themselves to do things.
Thank you all so very much. I can honestly say, I couldn't get through this without all of you. And familycat...I wish I could give you a real person to person hug. You said a mouthful about having a license to care for yourself.
Love to All-
Kristi
Rant away, that is what this site is here for. You gotta get support from somewhere. At least here you can talk with others who can relate with the same kind of treatment.
When my first two kids (now 19 and almost 16) were growing up, I never even needed to tell them about the MS (until the oldest was about 15)... because I was able to keep up with them and the needs of the household and family. Now, my last two kids (4 and almost 8) are used to me needing to rest. The almost 8 year old could tell you what MS is... and his explanation would make sense and be accurate.
I've had MS for 25 years and my husband of 22 years became accustomed to having the MS make very little impact in his life, although it has had a constant impact in mine. When the MS became worse and limited my ability to seriously keep up as I had been, he really suffered a big adjustment. In fact, I think he was clinically depressed (although never diagnosed) for at least three months.
Everyone is going to have to deal with the loss of function that you are experiencing, and that is going to take time, education, and understanding. It won't be automatic and it won't be fast, but eventually, everyone will probably conserve your energy for you better than you would. Now, sometimes when I get up to do something, one of my kids or husband will jump up and ask why I didn't ask them to do it.... not always, but at least sometimes.
I hate to be disabled and I hate to ask for so much understanding and effort from everyone, but I have given them all of the love, understanding, and effort they have needed and it is good that they are learning to reciprocate. It is awful though, needing so much help and feeing so weak.
Unfortunately, I think that one of the main reasons my family finally made the adjustment was because my gait/walking became more visibly "crippled" (although, I still don't use a cane). When the problem is one of energy or sensory deficits, it is largely invisible, and I think our loved ones either forget about our issue, or wonder if we aren't just being lazy. For them, it could be a guessing game, not wanting to do more for us than they think they should (for our own good)... and wanting to make sure we aren't "faking it." Very sad, but probably true much of the time.
MS can really destroy your self esteem and make you see yourself as less worthwhile, so it is important for you to realize that you are still worthwhile even if you have to do less. Good luck. I hope things improve soon. :)
Kristi