Do you friends, and or family make you feel like you are just not trying hard enough to beat this thing?

I have run into a rash of friends, and family lately that have peppered me with statements that sorta make me feel like I am just not trying hard enough.

Several friends, and some family members are really pushing me pretty hard about dietary stuff. Many think if I just switched back to a gluten free diet, that many of my issues would simply disappear. I have gone back to GF for the last 10 days just to test the waters. So far, I see no change. I was GF for years! the DD is a severe celiac and cross contaminates were making her sick. We were strict in this house for years. I still got MS even while on a GF diet. I had an endoscopy done recently, and asked for Celiac biopsies to be done just to be sure. All were negative and the GI dude told me I am clearly not Gluten intolerant nor am I celiac. Stop worrying. So, why do I let my friends, and family get to me?

Another group is on the "if you would just see my specialist!" They vary from person to person, but generally its a friend who wants me to see anything from a "native american healer" to some weird lady who is a 3 hour drive from my house, and will charge me $1000 dollars for the initial visit. Then she will load me up with suppliments to "rid me" of all of the unwanted build ups of whatever I have accumulated over the years to make me sick in the first place. If I would just go see their "healer" my life would turn around! isnt it worth a thousand dollars to make MS go away?!

Yet another group, wants me to try every new BS snake oil that comes along. I cant tell you how many bottles of Mona Vie juice I have been given. I have several of Mangosteen as well. I have a box full of suppliments that friends have brought along with the books that come with them, to explain how to change my life with just one pill!

Another group just wants me to change the way I eat. I have been given books and computer links to the "swank diet" the "makers diet" the "gluten free club" the "dairy free clubs" the "salt free lifestyle" The "eat more of this or eat less of that and cure what ails you clubs"

Im tired! I just want my friends and my family to acknowledge how hard I am trying! I take my shot everyday, even thru the side effects, even thru the not feeling well because of it. I attend every medical appointment scheduled. I do my OT, PT, and so forth. I eat an extraordinarily clean diet. I am organic, and eat tons of protien. I am very close to the makers diet. I am a good christian. I am a good neighbor. I am a good person, and yet, I have a gaggle of friends who just want to keep me busy trying "just one more thing"

When do you reach a point where your friends just calm down and let you have MS? Am I alone in this? Or do the rest of you get surrounded by folks who make you feel like you are just not trying hard enough to cure a disease that has no cure?

Sorry you are feeling bombarded...I just got an article someone sent me advising MS patients to get beestings to reduce symptoms...
don't I get stuck enough daily?

Keep your chin up, know that you're not alone in the fight, and just know that those with advice only wish to solve our problem for us...just like hubbies...

When I tried for years to get pregnant, people thought I was the cause with my mindset,self-imposed stress, not adopting (which they believed made you "relax" and get pregnant (urban myth - prospective adoptive parents have same rate of conception as non-adoptive people.) The drugs got me my twins. Now, if I'd just try harder!!! with my MS. They mean well but f@$% em all. Stick your fingers in your ears and smile.

well, it seems like all my friends abandoned me when I told them I have MS. I cant remember the last time I talked to most of them.


My boyfriend is the only one who stuck around. He doesnt tell me to try harder to beat MS or anything, but sometimes I do feel that he doesnt quite understand.

I always just say that my doctor and I have things well in hand, and I appreciate their concern. END OF SUBJECT. Any more than that and they will argue with you. They don’t understand. They never will unless (God forbid) they get MS themselves and have to go through all this kwap themselves.

I suppose there are worse things in life than having REALLY ANNOYING people who care about you, eh?

Dejibo - after a few years of being asked how am I feeling over and over and over again, the family members just let me be. Now I am just another family member with an illness/disease and not "special". It was nice when I got to that point where I didn't have to explain exactly how I was feeling every single time I talked to someone. Because no one in the family wanted to educate themselves about MS, I rarely get suggestions on what I should be doing to make myself better. Instead, they think I can't lift a feather, do anything physical and need to rest, rest, rest. That is until they need a favor from me, then my MS is no longer an issue to them.

I'm with Erin in friends or new people I meet disappearing when they find out I have MS. Maybe it's catchy... Wonder who I caught it from.

Then there are those well meaning people that think they know everything there is about my MS just because someone they know has MS. Because to them everyone with MS has the exact same problems and limitations and the exact same things will happen to me that happened to them.

Oh! and dont you just love the "but you look so good" crowd?! You cant possibly be "really" sick because "you look so good!" So, if I make an effort, brush my hair, my teeth, dab on some chapstick and wear deodarant and change my shirt, maybe put on a bra when I leave the house, folks are saying "but you look so good!" My next step is to go out with unbrushed hair, my old sweatshirt, my bedroom slippers, and maybe a curler left in my hair. Then I will have the other crowd saying "just eat poptarts all day, and it will give you back that vit you are missing!" ACK!

I have MS. I have a good medical team in not only the MS center, but the local medical center, and the extra special folks I have on my team, like my chiropractor, dietician friend, and my massage therapist, with my PT girl, and so on. I am not sitting home with my fingers in my ears saying "i dont have MS, I dont have MS" I find my friends currently are leaning one way or the other. I am not sitting home eating crumbs, and wasting away. I am taking excellent care of myself, and my family. Why is this not good enough? I find most in my life at the current moment fit into one of two boxes.

1. The "but you look so good" crowd. I can be in pain, wobbly, dizzy, nauseous, and half blind, and they think because I am groomed, and clean that I must be doing great!

2. The "you are not trying hard enough" crowd. If I would only see their special guru or vitamin pusher, or try bee stings or wrapping myself in seaweed, or dig holes in the yard, and then fill them in. ACK! enough!

I am about to start losing contact with several. This breaks my heart. Once upon a time I loved these folks. I was there when their children were born, died, or injured. i was there when husbands died, wives died, and children celebrated with graduations, and new babies of their own. its a shame, but it seems like some of these long time folks who leaned heavily on me in their times of stress, are not sturdy enough to take it when someone leans back. its just sad.

Where can I find new friends that will just let me be?

"Where can I find new friends that will just let me be? "

HERE!

it gets on my pip too.
fortunately only my mum and her partner know so far . she has however booked me in to see a herbalist when i get home to see her next month. he's worked wonders with a friend with parkinsons so no doubt it will for me also.
unfortunately her partner's sister has MS and she's fine. so i will be too of course.
other than that, i have understanding friends (nurses one and all) who take it in their strides.

i have a week and a half to decide whether i wil tell my sister when i next see her.

my last terrible neuro appt was partly due to me 'looking so good'. yeah, i made a bit of an effort to look nice- i was heading for town afterwards.
but all he saw was a young healthy looking woman and he blanked all my 'trivial stuff'.

My family and friends (the friends I have left) tell me if I would get out of the house more, get a parttime job, work in the yard, etc., well, you get the idea.....that'll make you feel better. Ya, right! After 7 years I'm tired of explaining to everyone about MS. I choose to be a recluse..lol