You know.... - Multiple Sclerosis Message Board

thereseg79 · 04-22-2008, 06:34 PM

everyone in my family knows about my diagnosis. Today I'm having the "ms fatigue" as I like to call it. You know, that feeling like your moving through wet sand. Or like someone drugged you, like someone just placed an extra 20lbs on your body, or something like that. It's hard to describe unless you experienced it. Ok, back to what I was saying. They all know, right, well when they see me today and ask me what's wrong, I respond I'm tired. I mean really tired. They're like, oh. No one in my household acknowledges my MS. It's like it doesn't exist. Today it makes me want to scream. It would be nice if someone would say, Don't worry, I'll take care of the kids and everything, you just lay down and rest. Nope. It just doesn't exist.

thereseg79 · 04-22-2008, 06:35 PM

Oh well, I'm going to bed now.

tarapags1107 · 04-22-2008, 07:00 PM

i know exactly how u feel hun.... im tired all the time too and when my fiance throws in the words of lazy we fight making me inevitably more tired and unable to go out...he gets irked when i can't answer him quickly enough....ya know when your brain jut doesn't want to process things as quickly as it used to .... you could try asking your hubby to help you out around the house more often and have him talk to your kids (if their old enought that is) to help with chores around the house and to give you a hand when you need it.. I know you feel like you shouldn't have to ask for help and people should just offer a hand once in a while since what we struggle with on a daily basis just to function is often overwhelming, but they can't see, feel, or possibly know what you go through. My fiance also never really asks me how I'm feeling, and I'm the one always bringing up my issues to him. It really makes it seem like no one cares at times. Did you just recently get diagnosed?? It couldn't hurt going to one of the local support groups with your husband at least so he can maybe get a better picture of what you deal with. I'm going to ask my doc myself if theres anything I can take for the chronic fatigue...... try to get enough rest when you can and listen to your body. If your not able to do something around the house or go out somewhere, don't feel obligated to. You need to put your health first. Stress is not good for anyone, especially with an autoimmune disorder. If you don't allready, start prioritizing. Write down a list of what you need to do and what you "want" to get done during each day....... Good luck and take care.... get some ZzzzzZzzs. Good nite..
Tara

MSJayhawk · 04-22-2008, 07:50 PM

It is always an obstacle to overcome within many family groups. Some families readily take up where you can not. For me, it was a sit down and explain my limitations. When I was bed-ridden, the family knew that I needed help. After 3 months of bed, chores got done. Was everything satisfactory? No, but it was done. Encourage your kids or family members with some "thanks for helping me out". Children can often be the most resilient.

If your house is not as clean as you would like it to be, live with it. When you are felling better, then clean like you want to clean. Your family may take notice of the difference. Learn to accept limitations when you are limited. As to others' thoughts of your being lazy, you can not change minds. MS is that kind of disease. You must take care of yourself first or you can not help anyone else.

tuckersmom · 04-22-2008, 07:57 PM

I'm with ya hun! I say I'm tired and they say.."well I'm tired too"! I just wanna slug them!

I have learned over these years to expect to have no support or understanding. Then I am just pleasantly surprised when I get some. I don't say anything anymore. I have decided that many just can not understand. To expect them to is unrealistic. No one can understand unless they walk (or stumble haha! ) in your shoes. I try to remember that if someone who has had to have chemo. and tried to explain to me how they feel, there is no way I could. I have been blessed to not have to go through that so I could not possibly understand.

Remember, you have to take care of yourself and rely on those who know what you are going through. That may be someone in your everyday life you meet through a support group or just here on this board. I have learned to set boundries on what I will say yes to and when I say no... there is no discussion... it is simply no. It has taken me 4 years to get to this point but it's a much more peaceful existence. During the past 4 years I have screamed, broken dishes (to make the point that I wasn't washing them!), refused to do laundry .... whatever it took to get their attention at the time.

You are not alone..we are here.

Lisa