Re: Re: Teaming up to take care of home

[Guest guest]

I feel like any of us were too hard on Sharon's husband. I think a whole lot of us would gladly reach through the airspace and shake some sense into him. I too landed in the middle of him-- and I can't tell you how pissed I was at reading his bs. I also want all of us to realize that as frustrating as this disease is to us, it is equally frustrating to our spouses and family.

I backed down once I cooled off, and tried to look at it from where he's coming from-- only not to the point of such total ignorant insensitivity.

If our spouses and family would take the time to learn about our disease-- they'd have more compassion. Maybe. Some of compassion is learned-- and if what we've been taught is to pick up after ourself, and that some things are someone elses job to do -- and can't see past our ignorance-- that we'd all still be keeping up the house and car and kids and yada yada, and that as women it is so hard to have to stop being the caregiver, and learn to receive someone caretaking us-- that would be great.

I think we all need to learn-- and for me, this has been part of my journey, to look not only at my anger at being sick- but to look and learn to understand 's anger with me being sick- and ladies, I am one of the blessed-- my husband takes wonderful care of me-- and yes, he has his times of total overload.

But when what I perceive is that all this comes from "it's the wife's duty to maintain house, etc."-- and again, that's my gut perception- then sadly- that pushes my buttons to fight-- and we all know how well I can fight!

I had a high school english teacher that made such an impression on me on graduation morning. She stood before each of her classes and took them outside to the campus under some beautiful trees, sat us all down- and shared with us her belief-- "The difference between ignorance and stupidity is that the ignorant have to knowledge of a different way, or even that the knowledge is there; and the stupid have total access to knowledge-- but refuse to go through the door to learn a different way." That was 33 years ago that she shared this with us-- and it's as fresh in my mind as it was a light that first day!

We, and our families have the access to learn about this disease, we have the access to make changes that can make this journey an easier one-- and if we choose not to do anything about the problems -- then we have to take responsibility for the outcome.

I did not write the second post on "Teaming up to take care of the home" to lay a guilt trip on anyone, and if you choose to feel guilty because you stated what was in your heart- you are doing that to yourself. It's not being imposed by anyone. (This is another lesson that chronic illness has taught me.)

I wrote it because it needs to be discussed. How do we work together in our families and community to make a bad situation less dreadful?

I don't for one minute think that bitching at the person who is sick and unable to take of the household is the way. I don't think that sitting back complaining about sore aching knees (and I'm sure they hurt-- we do understand pain) is going to add to a relationship.

If it costs some money to have someone come in and help, or if you can't afford it-- research what kind of assistance is out there to get help-- through your local Social Services offices; and go from there. To attack the credibility or tell your wife or husband that they are lazy and just want the attention that being sick can bring- or that they "want to be sick" is blatant insensitivity. Or in this case-- stupidity.

We all have our moments-- we are going to lose it with our spouses, we are going to blow up, and God forbid-- if you are on the receiving end, it will hurt and possibly injure the heart and soul of the one you love.

So, don't take if personally-- that isn't what I am trying to achieve.

I want some caring compassionate conversation about what to do to help when these things happen-- to all of us.

Sincerely,

Tracie

NS Co-owner/moderator

To: Neurosarcoidosis Sent: Monday, November 24, 2008 3:30:35 PMSubject: Re: Teaming up to take care of home

Tracie,I totally understand what you are saying; that is why I tempered myresponse. But I live in an unfriendly environment with a husband that Ispoiled and cannot do so anymore. he own't get help with his owndepression and says that itis my problem not his. He does nto helpevery often with stuff and it often angry.We have one bathroom which I desperately needed to get into when I washaving my cytoxan this summer. You know that you hahve got to get inthere or there will be a mess to clean up. I had to get tough with himto get out and when I finally got in in there the next thing I knew aremote control came flying out of the bathroom and it shattered in thehallway. All because I hurried him out of the bathroom.So this being said, I know we don't have the whole story but I have toside with Sharon because of my own experience.Take care.Terri

G.