Hi me2
Sorry to hear this.....but it is not an uncommon story, sadly.
Tell him
1. Your body is broken. It's not that you won't get up, its that you cannot This video might help
http://m.youtube.com/index?desktop_uri=%2F&gl=AU#/watch?v=r0w9-eQ_fKQ
2. Alternatively....tell him you are not coping and cannot cope the way you were once able. Be honest with him and tell him that you have been pushing yourself at times in order to participate in life and family activities. Tell him how it makes you feel to be disabled and missing out on life.
Tell him that as a result of it how it feels to miss out on so much....that you push yourself ....when in fact you know that this makes you more sick and then gives the misleading perception that you are not trying. Tell him you understand that now and that the reality of the matter is, that this means that you need to be far more careful and that in turn means you are going to need a lot more help with day to day matters in order to conserve energy and rest. Tell him the truth is you cannot manage and are not managing...that you need extra care, support and help.
Some spouces are sadly unable to be more attentive to our care and needs. They leave us to look after ourselves and expect that life will go on with slight modifications. The truth is much starker. Substantial modifications and help is required if we are going to have any real hope of making some small improvements. Think about the possibility of getting in some third party help....be it with meals, housework, helping you shower etc or drive you and or your children so that you can make the morning appointments if they are so vital.... and other things to lighten your load and give you the rest you need. Telll your husband this is what you need and ask him to help come up with this solution. This should send him a clear message that you need greater help, support and understanding, if nothing else.
The reality is...this is what we need....and we don't get it because we are still trying to meet completely ridiculous expectations .....both of others as well as our own. Some of pwME who are not bedridden, risk ending up there, because they may be too proud or un acustomed to asking for help or to have their needs met and or do not wish to acknowledge that have been handed a life altering disability which requires this sort of care and help. They usually are the ones who did too much for others or were expected to, before they fell sick and gave little consideration to their own needs. So it does not occur to them to start now....until things reach crisis point.....and then they are much, much sicker. PWME need to start acknowledging that their needs are valid and matter. They as wives, mothers, husbands, partners, sisters, brothers, etc......matter!
If we are not prepared to acknowledge that we are worthy.....and say to ourselves..."this is what I need and I am going to put these important needs/myself first, in the pursuit of health and well being".......and make this very clear to other in our lives, then we cannot expect them to support us in getting those needs met and having a real chance at getting back a semblance of our health and former lives. So sometimes, we have to start with ourselves and get clear about what our needs are and then find the courage to ask for our spouce, significant others and family to support us in getting them met.
I am not suggesting this applies to you me2....it is a simple observation I have noted is common place amongst sufferers and also possibly a reminder to myself about some of these matters?
If you can relate to any of what I have said and think the idea of third party help would be useful you might want to simply put these suggestions to your husband.....if for no other reason than to let him know the extent of your needs and current struggle presented by this illness. Then hopefully your husband will begin to understand the severity of the illness and your need for greater support and care.