first, i don't think that was very supportive; how old is he and is he capable of intellectually understanding what you endure?

i live with people who are emotionally unsupportive/abusive and try as much as possible not to discuss my symptoms. in the past, that worked ok, but now my symptoms are more obvious. sometimes i limp, drag a foot, drop things, spasm, tremor, have incontinence, and i cannot help gasping or crying out when the stabbing pains hit....

they pretend nothing is happening.

my friends however, just found out last year i have a problem at all because i hid it. they seem mostly shocked and concerned at watching me get so obviously sick. i'm in the process of dx but even all this time later (almost a year) every time i talk to them the first question they ask is about my health.

i think it is their maturity coupled with their love for me. it's not as if that is all i talk about, but hey, they don't even wait for me to bring up the subject. they do.

today, i cooked and stood too long and am now in excruciating pain from the waist down... i mumbled that i stood too long and my family member turned away.

contrast; my, am i grateful for my friends and please share with us all you like!

Oh My, I cant imagine living in your environment, so non-supportive. That hurts me. I will be praying for you. Sounds like you got some good friends though. I love this website, I feel like everybody is my friend. My legs have been hurting so bad this week, ive gotten a little depressed. who wouldn't when you feel like crap all the time. Happy Valentine Day!! Have a great week.

The fastest way to drive people away, is to center every converstion around a medical condition. It doesn't matter what the ill is, don't make it the only thing that defines who you are. Relate to others on several levels.

We are more than a disease that dwells within us!

My friends have kinda gone off by the way-side since I've been ill. When I do talk with them, I try not to talk about my MS with them.

Like tonight, a gf wrote me and asked me what I was up to. I politely told her that I was not feeling good and gave her a little bit about my day, and then told her that I would write her later when I felt better. She responded kindly. That was it. I will write back tomorrow when I'm feeling better, and not talk at all about my MS.

I don't think anyone really cares, except my family.

Thanks for the advice. I definitely dont wont to be a person talking about my health all the time. ITs something I have to live with and adjust in my own personal way. Way too much for others to bear, they got problems of their own. :)

Caraolinagirl123, I am glad that you brought up this topic. Over the years, I was incessantly talking about my MS. But now I am trying to get out and be more social. I have decided to not talk so much about my MS.

Of course, most people I already know knows that I have MS. But I am not in pain and that makes a big difference. The thing is I may feel anxious and want to obsess about things and then I want to blame it on my MS. So I am trying to behave better and not use MS so much to blame my misbehavior on.

Anyway, I am starting to meet new people and I am determined to not define myself as being MS. If I can ignore it some and have a real life, maybe the other person can not define me so much as being a person with MS. I am not in a family so it would be different if that was the case.

I also have gotten perspective because people who used to feel sorry for me with my MS now have bigger illnesses than me so they don't feel so sorry for me anymore. I am healthier than most people I know my age. I just can't walk as well as they can.

But don't feel like you are a whiner on this website. We all love to talk about whatever is bothering us. I feel that other MSers are like twins. You all understand me more than my family EVER did. My best friends are the ones with MS. My non MS friends have all gone by the wayside. I ran into one of them recently and she was surprised that I "looked well". I guess she was surprised that I was still walking or whatever. So people can have other problems. I am not sure that there are "regular" people.

I usually only talk about my symptoms with other MS friends. Hope that you have a local support group that you can talk about your symptoms with. Most other people don't want to hear about my bowel problems LOL!! So I basically talk about it to other MSers.

My feelings is it's kind of none of someone's business unless it's a friend or relative that actually cares & understands.

We go through enough without having to field negative comments from those who wouldn't understand or get it.

If someone asks me why I have a walker for example in a curt or negative way, I just respond with..."Doctors orders!" Same thing I say at a party to the question question of why I don't don't drink said in a nasty way..."Doctors orders!"

If it goes a step further..."But, you look so good!"

I reply..."Well, I really wish I looked as good as you assume I looke to you!"...Hehe!

& if someone asks with real care & love in there heart, I tell them..."I have MS & MS Epilepsy! The walker helps keep me mobile!"

As for sharing with family & friends...as stated above...I only talk to those who understand, it's privileged info. (for lack of a better word) & I'm still not interested in an adverse reaction from some people, so I am choosy with who I share my day to day health stories with. My fiance & I share with friends & family we know have good hearts & who care & share with each other the rest of the time & that's enough.

By keeping something this important & up for so much misunderstanding & judgment, close & in a way, sacred (for lack of a better term), it helps minimize the sting of unkind remarks as much as is possible (can't minimize the stares) & maximize the positivity & overall good vibes you feel (as much as is possible) facing chronic health challenges such as this day in & day out.

It helps you see the people that really care for & about you & who you can care for & about. Then, I feel, when your mood isn't all about fending off the attacking remarks about your health all the time & more about creating a loving circle of people around you with positive vibes who care & share in ALL aspects of their lives...well, you end up drawing & seeing more beauty towards you & less negative.

Even if your health is shit most days (TRUST ME IT'S REALLY HARD HEALTH WISE & GETTING HARDER AT TIMES) BUT your attitude can compensate for your health lack & pick up the slack so to speak.

That's what I pray for daily..."Help me be strong enough in my soul/core, to be able to get through what is going on in my body!"

God sees my effort, so I know it's not a futile prayer!

Take care,
Stay sane!

I used to think about it, but never burdened anyone with it. Now 3 yrs later, I only think about it when someone brings it up or I see someone walking w/disabilities..

I guess I talk about mine too much is because Im ALWAYS in pain in my legs, so its a constant reminder of MS. :( But IM gonna work on this and not talk about it so much.

I think that I would talk about it too if I was in pain. So is a doctor working on your pain? Any luck with a pain management plan?

People shouldn't be in pain nowadays. There are so many ways to alleviate pain. Also, your local support MS support group (if you have one) can give you ideas about pain. People in my group talks about pain and how they manage it. They have tried nerve cutting (jaw pain), neurotin (back pain), and other ways. Hope someone is working on it for you. My stepmother used to be on methodone for all her back pain. It worked and kept her sane (actually, she was kinda insane but that was not because of her pain!!)

Hugs to you, caraolinagirl. Be well.

It is VERY hard not to dwell on our illness when we are in such discomfort. I do believe that we can drive away people if we do focus on MS too much(or any illness/problem). Since I had to retire in 2005, I have become more and more reclusive because I hurt or am too fatigued to go anywhere or start new friendships. But, I am trying to do better and get out more now. Sometimes I don't want to talk about or think about having MS......just wanna talk about "normal" things and have some fun "girl talk"!

Carolinagirl......you can whine, complain or cry with me any time because I do soooooo understand!!!!!!!!

Now that you mention it, I think I do! Talk too much about MS that is.. At least my 15 year old daughter thinks so. Yes that is insensitive and unkind, but it still starts you thinking.

I am fortunate and blessed to be married to someone who supports me 100%. BTW - my daughter is getting better as she gets older.

I'm going to try to watch it, especially when the DS takes complaints and pity parties with full understanding!

You're right, the DS gang in the BEST!!!

I love that we have boards such as this to share on. I think when I was first dx I tended to talk about things ms related often. But, now, unless someone actually asks me, I usually don't mention ms issues.

I try to not discuss things with even my family. My kids have too much going on in their lives. Both parents have diseases. So, I try to avoid bringing up my issues. (dad has cancer, mom has ms) So, I try to "act" like things are as "normal" as I possibly can.

There are times that I wish I could just talk freely about the issues, but, I feel when I do, the kids just tolerate my comments...then they try to move on to other things they think is more important...like the latest movie, ect.

With "friends" I try to not get into talking about my ms. I really feel like they are not really intersted, so, I just avoid the conversations all together. I just keep the subjects generic. No MS topic's.

I don't have any super close friends, as most of mine have died of cancers. So, I just try to focus on keeping the positives as much as I can. That is why I really appreciate having these boards to share on.

That is how I see it.

I have recently been diagnosed with M.S of April 2010. My gate and balance I have lost. I take Avoenx every week..And, my most recent MRI looks better. But, it is getting more diffucult to walk with my walker. And, I use a wheelchair more often then I do my walker. I am losing muscle stregth, in my legs. Especially, my left..I have drop foot. What can I do improve as far as exercising? As far as exercising and rehab, and because I can't work I have no insurance.

Psychosomatic works both ways. This has been at the very core of my good health. I've had this bullshit going on ten years now.

All those cheery slogans about thought (stay positive, I have ms-but it doesn't have me, etc.) would be a completely worthless waste of time if the mind had nothing to do with anything. Why would it matter if you were positive or negative if it had no bearing on the outcome? Attitude would be absolutely irrelevant, except to deceptively make yourself feel better about hopelessness.

There is an enormous difference between positive "denial", and negative denial. The negative would be to refuse to believe something, even though proven. The positive "denial" would be to refuse to dwell on it.

There are things that cannot be changed through mind-over-body. But those that can be, you MUST. Or you rot away...With anything in life-any matter you can think of-especially sickness.

That being said: Have you ever said anything "out-loud" to, for instance, remind yourself of something? This works on the basis that saying something aloud "solidifies" or forces you to remember or accept something. Positive or negative. Human beings are often thinking many things at one time, often not focusing on just one. You can think about multiple things at one time, but you cannot speak two thoughts at once. This mandates that a person must focus on what is spoken aloud.

Now you may see what I'm getting at. If you speak of ms this, ms that, ms..ms...ms...ms...ms....It is your focus.

I know you may need someone to listen to you. To understand. To not shy away. Truth be told, they can never feel what you are feeling-they are not within your body. Think of the 5 senses: sight, hearing, smell, taste, and touch. Someone else can see, hear, or smell what you do. You can share a meal with someone, and both taste the same thing. You can NEVER share the feeling of touch, at least not how your very own body perceives it. Even a fellow ms'er may not feel the same symptom the way you do. No matter what words, pictures, or examples you try to use to convey it, no one could ever Truly understand exactly how you feel. Why try? Unless it is imperative for those around you to know, so they can possibly help you or be aware. Other than that, you might just be pummeling yourself for no reason (consciously AND sub-consciously simultaneously). This negates any theory that you may have any control. Your mind is telling your body "it's cool, kick my ass whenever, I don't mind". There may/will be times that "I have ms, and ms DOES have me". If it's definitely going to affect you, and there's nothing to be done to stop it, you have no say. But to open the door for it to run through you, when you might have fought, that's just suicide.

Fight til you are beaten, then fight even harder. Mind over matter is just one of the many ways.

PM me if you want to hear some of the "crazy" stuff I've done to help stay healthy. Mental gymnastics works for me, amongst physical things too. Medicine can only take you so far.....Hope at least a little of this comment didn't sound bat-shit-crazy to you... 8^) Take care!