Does your family understand your illness?
 

No matter how many times I try to explain how I feel to my family, they don't seem to understand. Every day I come home from work, park my car in the carport, walk down the driveway, up the stairs and into the house. By the time I reach the living room I have to stop and rest my legs-they just don't feel like they will carry me any farther. Every day my husband asks me why I'm standing in the middle of the living room. Every day I tell him I'm waiting for my legs to catch up.

Then the other morning as I came out to work in the garden with him I told him my legs were particularly bad and I was moving really slowly. No sooner did I make it down from the house to the yard when cut his finger, would I go get him a bandage. I said sure, but why don't you come with me, it will be quicker. For some reason he couldn't comprehend why he had to toddle along with me, and so he didn't, and stayed down in the yard bleeding. When I finally came back out he had the nerve to ask me what took me so long! I just about threw a potted geranium at him!

Is my family just really dense? :confused: Any of you run up against similar situations?

I'm learning to strike a balance with explaining my illness to my husband. I try to be specific about my symptoms, such as "I don't feel like going shopping today after all, because I'm having discomfort in my leg" or "I need to go inside because I've overexerted a bit and the heat is making me feel weak and wobbly".

I'm also learning that if I OVER-explain my symptoms, his eyes go blank and I know I've lost him.

At first my Family thought I was faking it, to get out of doing stuff. They just couldn't understand, how anyone could get so fatigued, doing so little.

When I went to the Hospital with a major attack, it freaked them out. They never questioned my symptoms again..:D

Just because your Hubby doesn't understand, doesn't mean he can't be understanding..:rolleyes: Kick him in the butt..:p

If I'm limping, Himself knows I'm not well. but when I'm walking ok, he can forget there's still underlying fatigue but on the whole, he's marvelous.
What helped us is a wall calendar. I jot down my symptoms with arrows to indicate start, stop, better worse etc. He only has to scan the chart and he sees where I'm at. He likes that.

My mum keeps telling which supplements I should be taking. There's not enough hours in the day to take them all.
and nobody else knows. I don't want my young nieces growing up with an auntie who's sick.

Nope, not much, and I sincerely hope none of them ever truly does!

Early on, my attacks were massive and typically lasted many months. I used to try to explain it to friends and family but learned quickly that it's a futile effort.

I will answer direct questions with direct answers but I will not try to explain why I've made a move or a choice.

Frankly, my dear, agreeing to go fetch a grown man a bandage is utterly incomprehensible to me! ;)

After 20 years my DH still doesn't get it. He says he does but his words and actions tell me something completely different. Believe or not my 10 year old DD gets it where no one else does. She is wise beyond her years.

OH YEA! You are not alone in this one. I come home from work everyday with legs that feel like led and barely make it up the stairs. I am amlmost always asked what's wrong after being observed resting at the top of the stairs or stumbling up them. After taking care of the evening chores and finally sitting down I am asked at least 5,6,7 time "honey can you get me this that or the other" which means me getting up and sometime making the trip up and down the stairs. Remember I have already been asked what's wrong, and responden that my legs have had it for the day. I just think they don't want to know what's wrong or to be inconvenienced by it.

My DH goes to the other extreme. I want to go outside and dead head the roses, and he comes over and takes the pruners and says "will you please go sit down?!" I start washing my car, and he comes over and takes the hose. "will you please go sit down?!" While that was awesome for awhile, it grew old very quickly. I am not an invalid, and I am capable of knowing when I am doing too much. I am capable of washing my car on a sunny day. I love taking care of my roses, it brings me joy. let me do it!

It took some struggle, and it took some tears, and it took some education to get him to understand that I am not going to crumple and need a wheelchair because I worked in the garden.

My symptoms can vary widely and be very subtle or get somewhat intense suddenly. It's hard for even me to know what's going on. Knowing that, it's a little easier for me to be patient with others for not getting it - a little easier, and only as long as they're trying.

We're in florida and I'm doing well. We went to the beach of course. The waves were'nt too strong, but it is the ocean, so they're pretty strong for someone who's not used to that. Between being out of shape, legs a bit stiff and having vertigo from watching the water move, it was all I could do not to fall down. Coldn't stay in the water long, and only up to my knees.

I probably did look pretty funny out there, but was not amused when dh was laughing at me.

It took a long time but I think he gets it now. I had to yell at him for leaving me standing in the grocery store when I was dealing with a bout of ON, vertigo and weak legs, but after that episode I think either he got it or he got scared! :p

He's seen me stand and wait for my legs to get going before I take a step, saw me feel my way around a brightly lit room, watched me make my way outside and shuffle my feet to find the bumps and dips in the lawn before I would move forward, etc. when I was in an exacerbation, and I think he gets it. He doesn't ask anymore and that's ok, because I know he's watching out now too.