Why do we always have to pay?

[lighthouse33]

We had a visitor here for a week.  Lots of talkiing, entertaining not to mention they stayed in the bedroom next to mine.  Could not get naps or sleep at night.  Since this person left I've been in a bad flare.  Haven't been this sick since before my diagnosis.  

I made the point of saying to one of my parents that if this person hadn't come I wouldn't be sick.  They shot back some angry reply and I said Oh, so you're saying that all of this is my fault.  They said partly.  Had another discussion today and they said Well I've learned to push through because I have to.  Well I cuold be in the hospital too.  What do they think it means when my rhuemy tells me to rest and avoid stress.  They don't have any idea how serious this is.  

[Katybarstool]

Hi Sweetie

It's horrible when people don't understand us. But, how can they? We look and feel good some days, and then other days collapse . It's confusing to us, so it must be confusing to other people.

Try not to be to hard on yourself, or on your parents. It's a bit*h, but at least your friends here understand.

Hugs
Kathyx

[Patze]

Hugs to you Lighthouse and I'm sorry that your folks don't understand the connection between stress and SJS. 

Yeah, my folks tend to roll their eyes when I get to talking about SJS, Hashimoto's, whatever.  If it's not cancer or diabetes (that they understand), or some other "serious" ailment, they tune me out (then act surprised with all the meds I'm on..keep telling them that I still have that "mystery" disease.   Guess it's a generational thing).

Take extra care of yourself, okay?

Patze

[Epson]

House guests are like fish, they stink after 2 days

[season]

I became extremely ill after a friend of mine showed up one Saturday afternoon with her car loaded down with all her clothes. She informed me that she had come to live with me for a while. I hadn't seen her in five years except for an occasional phone call.

I tried to keep her intertained and be the best host that I could be, but all the while I was sinking. I finally told her how ill I was and all the health problems that I was having. She said I didn't look very sick.

Anyway, she is back home with her hubby and I may have lost a friend. Our illness is so deceiving because no one can see it but we know it is there.

[eyeamdry]

I think if we have relatives visiting/staying overnight etc that we should go ahead and take a nap if you need one.  That's where a spouse helps out if you have one.  Even if you don't, your company should be able to entertain themselves with tv, a drive or read a book while you rest.  Then perhaps they will take you seriously and next time won't be shocked when you say you're going to rest.  Luy

[Catilee2]

Well said Eyeamdry!!!! 

Catilee 2

[irish]

One thing that I think of is how I "pushed through all the pain, weakness, infection, itching, etc" when I was working. I am talking years of doing this. When I would walk out of the building I would literally deflate and was hardly able to sit up to drive some days.

I guess I would tell people (as if they really listen) that you pushed as hard as you can for years and now your body is so weak and sick that there is no push left. People will never get it cause we don't look sick. I still maintain that I look somewhat sick no matter what others say.

Also, my advice to people with houseguests is, if possible, tell them before they come what your health status is and that you have to nap every day, etc. If they are true friends/relatives they will entertain themselves or take a nap themselves, watch TV or, maybe, even start supper.

For those who come unexpectantly I guess I would explain up front how things are and explain that all your energy is needed for certain things so you can't entertain them much. Again, if they are true friends they will survive. If they show up unexpectantly I would be upset beyond belief as it seems very rude to do this to someone. If they get mad so be it. Life is tough and having the decency to call and ask if you can come really isn't asking too much. What if you had been gone on vacation. They would have had to hit the motel or infringe on some other friend.

Just my humble opinion. My feeling is that no matter what it is my first duty to make sure that I have the strength and energy for my family and home. After that nothing matters. If I have a good day and can do something it is frosting on the cake.