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.

Nope.......

And they've had over 21 years to learn...

Tom

Most of my family understand my physical symptoms because I can't leave the house without a cane. My dh tries coddle me much like Dejibo's dh. That drives me nuts!

My sons who are 22 and 18 are a different story, they still expect dinner to be cooked everyday, lol! Ain't gonna happen.

My cognitive issues are the ones that most of my family do not understand. I barely understand them so I try not to be too hard on my family (most of the time :)).

Well, pith on them, then..:D

LOL!! I'd have said sure......gone inside, changed into my comfy clothes, perched myself on the couch and waited for him to come looking for me!! Then, he could get his band-aid (and hopefully the message)! :cool:

This is how I approach it also. For the most part I don't mention the MS unless I have to because no one can truly understand especially if its not something visible. If pushed I will be specific and unyielding.

Like AMN wote, I hope they never do "get it" because that would probably mean they have it. :(

My kids seem to get it pretty well. I mean, I don't usually even mention my sx to them unless they are just very obvious and I'm struggling. If I'm having a bad day they usually pick up on it.

I hope they don't ever get it, like several of you have said here, because then it would mean they are experiencing what I'm experiencing.

Before I had sx of MS I wouldn't have understood it either. I mean, I'd have been sympathetic but I honestly don't think you can truly understand it unless you've lived it.

This is exactly how I feel. Just as I can't presume to understand what it feels like to have a bullet wound, be pregnant, or pilot a cruise ship. It is simply impossible to "get it" unless one gets it him/herself (MS or one of the sisters like FM).

Years ago, I just told my family that there are times, days, or weeks when I'm just not going to be up to much and that they should prepare themselves to accept it at face value. They've been very good about it and it's a lot easier for me.


The way I've learned to quell the doubters is to avoid mention of the disease in my responses. Instead of saying that I "can't because XYZ..." I politely but firmly decline and ask for a raincheck or just drop it.

Glad you mentioned the "sister" diseases, Cindy. The local friends who really get it are my friend with Lyme (?) and fibro, my friend with Rheumatoid Arthritis, and my two friends with Parkinson's.

I think this is the best answer I have heard at any time. Mind if I use that AMN? :) I have tired to explain fatigue to my brother. He says, "Yeah I know how you feel, I get tired too, just sit down for a while, you'll feel better." Grrr

I tired to tell him many times, "It is waaay beyond tired. It can be like the worst flu you have ever had, where you just have to lay your head down on a pillow and right now." Or my legs feel like I am walking through quicksand. He don't get it! :rolleyes:

My kids, well they have seen me at my worst, and now my best, so I think, they think, I am "All Better".

I get the typical, "But you look so good", and I just say, 'Well MS don't make you ugly", or "I have my good days and my bad days." I won't bother anymore with that. I'll just say thank you.;)

From now on I won't explain each symptom, or why I can't go to a wedding (like if I relapse). I'll just use AMN's words. This has been since my 1981 dx. Don't you think they would "get it" by now?

My DH understands it. He has seen the worst 24/7, and during my 4 times a year relapses from heck. Kids were never home that long.:D

Famous last words. "Unless you get it, you don't get it"

Lady, I hope I don't have to be sick for 30 years before my dh understands.

If nobody else gets it, I can mostly avoid them. But I hafta live with that guy.

I hope he gets it, that when I say I have a headache, that means a migraine. And that doesn't mean no sex tonight, that means no arguing about it, too. And keep your voice down, the tv low, and the lights off. This is some real pain and my eyes are crazy. I can feel my hair grow and it feels like shards of glass.

I hope he gets is someday, that when I say vertigo, I mean - for the umpteenth time - don't run off on me in the store. Stay behind me if we're going up the stairs, in front of me if we're going down them- and don't rush me. Don't get snide with me if there are places I won't go and things I won't do right now - i'm trying not to fall down and make a spectacle, if you don't mind.

I hope he gets that if he asks me to go - wherever - and I say i'm not up to it, that I said so the first time. Why ask and ask until I finally agree? I'm miserable, and he wonders why....

Ten years and he does not get it.

Most men stay like dependent children for a long time....(except for our men with MS, who are forced to grow up fast) My DH was like that at first, but he did grow up....and, became my biggest support and cheerleader.

Raising the kids was my job, while he was out making the big bucks. It's a good thing I was in remission for most of those years. He came through, big time, for me when I needed it the most.:hug:

So, hang in there. If he loves ya, he'll wake up and smell the coffee, sooner or later..:rolleyes:

My DH was leaving for a shooting tournament today. I was supposed to go, but chose to stay home, and he turns and says "want me to call someone to come sit with you?" WHAT?! :mad: I told him I have MS, and some tummy troubles. I dont think that requires round the clock nursing care. He was ready to cancel the competition so he could stay home and sit with me. Gawd! I love this man, and they dont come any sweeter, but DANGIT! get out! leave me in peace for a bit. Go do something other than stare at me!

I am not sure I would be happy with the other extreme either, but can we meet in the middle? I mean wow! :cool:

Wow, Dej, not sure I could handle that much attention! I have no idea how my DH would have adapted to my illness. He was a pretty protective type, tho.

I think if I had been married when I was dx with MS my attitude towards it would have been a little different. As it was, I knew I only had myself to ultimately depend on so I tended to be very independent and self-sufficient. Had DH been here I think I probably would have depended on him more than myself for some things. Don't get me wrong....I would have loved to have had that chance.....but I didn't and now I feel like I can make decisions for myself and handle my own care very independently.

That may change in the future - and I'll have to switch gears and come up with a new game plan then - but I've had to switch gears unexpectedly before and I survived it. I'll survive this, too. :)

I think my dad understands somewhat...he's a nurse, so he might intellectually understand at least. My aunt, also a nurse, might understand some of it, but sometimes acts like I'm using the MS as an excuse.

My mom doesnt understand, and I dont really expect her to. She's got her own health problems.

My sister is starting to understand...at least the chronic part of chronic illness, since she's been having a chronic (but correctible) problem. She does seem to be a little wrapped up in her own problems and her kids problems to not have much empathy tho.

The rest of my family, aunts and some cousins (on my dad's side) do not get it...except maybe one, because she has Celiac Sprue (she's adopted, her mom is the aunt that's a nurse)

I've only told one person on my mom's side of the family (because except for her daughters, she's the only person on my mom's side that I actually talk to), and asked her not to say anything to anyone else...I'm sure she's told her family, but I did tell her not to post about it on my blog when she leaves comments there. I got the feeling that she understood. She told me she had a couple of friends with MS. Of course, they were a lot older than me, and a few of them had passed away. Hopefully she doesnt think I'm dying or something. A few people I've talked to, assumed that MS was a fatal disease (or they watched that stupid episode of Ophara, where she and her guests made it sound like MS kills quickly or something)

I have a friend up the street that told my husband when i was first dx, that everyone she ever knew that had MS was IN a wheelchair by their 5th year of dealing with the disease. She scared the crap out of him! She is nosey, and has known 3 people in her whole life with MS. 2 had PPMS, male, and in their 40s when dx. the other was an elderly woman who had severe arthritis all of her life, and was pretty crippled long before MS. She speaks as if she is an authority on every situation. I have worked hard to get my husband to understand that I am NOT going to end up in a chair. Most RRMS patients dont. Poor thing. No wonder he has been so over protective.

I enjoyed my day alone, while he went to the range for the shoot. I needed the break.

my family is the same
 

hi i have hard rsd for over 3 years now, its really really rare, whats worse is
theres no cure for it let a lone a 1 defintive test to conferm it, its a serors of tests and observations blaa blaa ... what makes matters perticularly horrad is that my mother works in the medical feild, so apprerntly acording to her, there shoudl be some medicine to fix me or make me have a close to normal quility life,, when i tell her air tuching my legs is suicidal pain, like a burn victum haveing the air tuch my skin, she says but your not burned,, ahhh daa dosent mean it dosnt feel that way. the worst part is, i am disbaled, thanks to my long term boyfriend i have the help and suport i need for daily liveing and nesseary tasks (some days i physicaly cant get out of bed evon to pee) ,
now do to the lack of my family jsut not understanding, nor being sypathic to me being disabled ( i was 22 when it happend) and me being young, ive pretty much have had to cut all ties with most of my family. it sucks and i hate it, but i rather have them not in my life to have them be in my life, and ask me to do things that are soo physicly painfull i voment and then wounder y im crying, or made to feel liek im jsut being lazy. MY disabilty will always be there untill it kills me, i am not sad about it, i live my life very happy and pretty good for the times we are in right now, i dont hate my family i am not mad at them, i am sad, sad that becuse of there own ignorance they are going to miss out on my life and some woudnerfull things in it, I know when i do die, if my family hasnt treated me diffrently before then and we havent had comunication still, i know my family and my mother mainly will be eaten up buy guilt, this i do not wish, i only wish that if that happens she veiws this as a learning lesson and never agan judges some one buy there age or how they look and act. I would have never guessed my mother woudl have acted liek this once i became disabled, ive been dying my hair purple and other wird colors since i was 10 i am tattooed and periced, and she has been totaly supportve and exsepting my hole life, for me her non beliveing is a total shock, one i have learned to deal with. but i cant help but question, if what appears to be what i procive to be disbalivement from her, is really fear guilt sadnness overwhelment and total frustration that she cant do anything to help, after all she is the medical feild, . i do not have any kids so a monthers love for her child as a mother is not something i will pretend to know how it feels . but i have seen what guilt fear sadness overwhelment and frustration has done to my boyfriend of years, it has been a battle one neight of us ever intend to give up but it has left battle scars, ugly and deep. but love will always win in the end.

The only other person dh is aware of with ms was our friend's mother. She was bedridden - could not even transfer to a w/c - died early. I think my dh is a bit freaked by that and pushes me, thinking the longer I'm up and *normal* the longer it puts off the *inevitable*.

People get some strange ideas in their heads.


I don't think i could deal with the smothering either. I don't need life support, just regular support would be fine.

He is better with the headaches than most of the other sx - now I see why. You can look at me and tell I'm sick when I have a migraine. I was looking over the pix and videos we were taking, and I looked kinda green when I had a migraine - but you can't tell how bad the vertigo was until it was me holding the camcorder.

My footage gets really shakey and tilted. I showed him that and he said he felt kind of sea sick just watching.

:p

If only other sx were so easy to explain - if only it were so easy to see what's going on in HIS head too, LOL!

Oh no, Brain, my DH is the only one who does understand. We grew up together, since we were kids together. Childhood sweethearts and all that. So he knows how I was, how I changed, seen me hit bottom with relapses that took me down, and is still there. He was there for me from day one.

But he knows I am there for him should he ever need it too. He has never babied me, but actually forces me to do things that are in my best interest, that I may be afraid to do. Fear is the worst thing.

If I think I can't do something, he says yes you can, it gives me strength to know he believes I can, so I am willing to try something. Then I am happy I did. I sometimes need that little push to get me motivated.

As for all our kids, and the rest of the family. No, they don't really get it. Like I said, I will stop trying to explain it to them all, it gets old, ya know?;)

I'd have to agree with you; RSD does suck. I had it at age 16, went through all the tests, blah blah, scared, no one told me what was going on. I remember the excruciating pain. Luckily for me I was treated with steroids and my RSD went into remission and has never returned :)

It is strange, but it seems as if you just cannot educate some people, especially people who think they're very educated. Just because your sister is a geriatric nurse, or your neighbor is a lab tech, or whatever, they seem to know all about your illness. If my gyn started to give me advice about my eye disease I'd really question her, even if she is an MD.

I can also relate to turning your back on family just to keep your sanity. I didn't do that because of my illness, but for other reasons. It is sad, and I feel sad for them, not me. They are the ones missing out on the great things in my life. It's been more than 10 years since I spoke to my folks. I gave up a long time ago trying to understand why my family didn't seem to understand me.

It sounds like you are dealing with your life the best you can with a great attitude. I hope your family will one day understand your condition better! Meanwhile hang on to that great boyfriend:hug: