It will vary per person. Some of us (ppl in America) love labels and want the attention. Some want to be a victim and have reasons why they cannot do things or attempt things.

I personally am not that person. I will not tell ppl that I have an autoimmune disease or discuss what I cannot do. I've seen plenty of ppl list in the public bio that they have MG, lupus, etc.. I personally do not let the disease identify me.

MG in perspective is a dynamic disease that can change week to week so think of it like this "It is What it Is"... in other words, I'll deal with it. So what.

Remember, what you think about, discuss, and focus on most of time will be your life.

Reduce the time you spend talking about it.

When you speak with others, tell them you'll be fine and that you're managing it, because that all we can do.

Don't become a victim.

Live, love and pass it on.

YES, some will disagree with my philosophy.

I push myself mentally and physically 6 days a week. I'm still in the gym 5 days a week. Eat anti inflammatory diet which I love. Do everything you can to better yourself.

Some just give up. Don't let that be you.

DM me....if you want to chat.

I think it just may be that I'm a bit sicker then you are in terms of it's effects. I do go to the gym a couple days a week, and it is just brutal on my body. I'm actually taking this week off because of how weak and tired my body is.

I'm on disability for it, and have been for a good 12 years now. Sadly, it comes up at some point when meeting new people because they always ask what I do for work. Unless I lie, there really isn't a way to get around why I'm on disability.

Your mentality though, I do like a lot, and I will try to adopt some of that philosophy you shared with me. I do need to alter by diet a little, but I do eat pretty healthy considering my income. I'll never give up, as I know there is much to life to see still, and there are things I want to do before I leave this earth. I do know, however, there are days it is just a struggle to get out of bed, and those days, for me at least, are probably the hardest days of my life.

DM you do bring up some excellent points about dwelling on how you are doing. Anytime we obsess on a topic about our health it can make our days worse.

WIth that said I have experienced the other side of the story so to speak. I have been so weak that I can hardly do a thing, I have been on a respirator in ICU for the better part of a month and learning how to walk again after that. When you have those events in your life you simply cant forget them or not 'allow' them to affect you, trust me they can and will.

We have to and should give each event in our lives proper time and a healthy outlet mentally and yes that does mean talking about it. If you dont have a friend that will listen, get to a counselor to be able to let the stress of these events in our lives out. Holding in and trying to forget anything traumatic in life is simpley a bad idea emotionally.

Tesinato, I would consider a counselor to just help sort through the feelings you are having now, they are quite real and simply part of MG. DM is right MG does not define you, but at times it takes over who you are, but only physically. When we get a disease like this a part of us 'dies', meaning we lose a part of who we used to be.

Recognizing that and understanding that we are going to roughly speaking go through the 5 stages of grief, some more than others. This is why I recommend working with a counselor, DM is right a good part of the battle with any disease is in the mind and keeping the mind healthy is as important as keeping the body healthy.

In reading your posts Tsianto I can see you are struggling with the fall, you are struggling with losing this part of yourself, remember though that with treatment most of us improve. Not to say its a totally smooth ride, but we can in many cases end up having more good days than bad. Take care of the mind, take care of the body and focus your energies on getting better.

Best of wishes

Joe

I hear you brother.

I see that you've been through a lot. Be careful not to identify yourself - AS A PERSON - by the events in your life. I agree Joe about getting some good counseling and be aware of the "type" of counseling you're getting. You want to get past your past. Not relive for 3 years in therapy.

Best advise when I'm down and out - SERVE OTHERS.

There are plenty of other people out there worse off than you and me. When I serve them (volunteer), it changes our perspective. Find at least one day a week you can serve others. Somehow even with limitations you can serve.

I can see that the past has you gripped tight. FIGHT out of my man. I'm 48 with scars from the past but I've learned to live today and today only.

Remember this quote:

You see, it's never the environment; it's never the events of our lives, but the meaning we attach to the events - how we interpret them - that shapes who we are today and who we'll become tomorrow.
- Tony Robbins

--- The meaning we attach to events (how we interpret them) that shapes who we are today... MAN that is powerful. Just think about.

Keep going to the gym. Make some lifestyle changes.

Do something NEW each week. Find a way to serve others.

Get some fantastic counseling... some churches offer free counseling by licensed therapist. Look into it.

Feel free to send me a direct message to chat sometime.

God bless you my man and fight for your life.

DM

It impacts every day of my life.
I have yet to go one day without thinking about it.
when I wake up I assess .....how should I balance my week.
If I have a week where I do whatever I want I pay the next.
Never know for sure what the next day will bring for sure.
After 4 years it is easier but it is always there.
If I go upstairs....in the. Morning....will I be able to get through the say?
If I do activity on Wednesday , will I be able to babysit Thursday.?
It is always. A factor in every decision I make.

Family have told me they appreciTe how I know my limits.
That makes me feel good.

I can only swim 2 to 3 days a week.
I tried more and it didn't work.
I remember a time when walking up the driveway was all I could do.
We all have this disease at different levels.

Dealmaker, you said a mouthful guy. It's been 2 years since I was diagnosed and I swore that MG will never take over my life. I go to work everyday, I stay active as much as I can and it just keeps getting better. I got off the prednisone in November and decided to lose the weight from it. It took about 3 and a half months, but I am finally at the gym 4 days a week, and I just lost 30 pounds and I will keep shooting for more. With that being said, I also realize that people are different and some MG patients cannot do the same, but they cope and deal in their own way. My heart goes out to them. I wish that we could all get better, but what works for some, may not work for others. We are all different.
MG is a pain in the rear, but I refuse to dwell on it, I only focus on destroying it. Did you ever watch the documentary Fat, Sick, And Nearly Dead? Everybody should check it out, it will definitely make you think.

TBreak,

That's a great documentary. Wish everyone here would watch it but many will not.

FANTASTIC job at losing 30#...I'm sure it helps alot. Glad to here there's another fighter here along with Ann, Joe and Tesinato. I fear many cash in and give up.

Come on Tesinato...don't give up.

Try a few habits.....

Try not talking about MG for a week.

Vow to not complain (very hard for all of us) or talk about the past events for a week. Don't give excuses, justify or rationalize.

Smile more.

Find a new purpose of serving, help someone else.

Determine if you can make some lifestyle changes that will help your MG. For example, if you watch TV - give it up for a week. I have three kids 10 and under and our TV stays off at night and they're at school in the day. We spend time together instead of watching 'celebrities'. etc..

Look into Autoimmune Diets (Dr Weil or the Paleo)... MG is an autoimmune disease.

Stay in touch here with us to let us know the progress you're making.

DM

I will definitely give it a shot. I'm definitely not giving up. I'm still here after almost 13 years with this, promise, I'm not letting it conquer me. From what everyone is saying, it just seems like I need to alter my perspective on it, and I'm surprisingly pretty good at that.

Not sure how not watching tv, or doing other low impact activities would do anything though. To be truthful, some days it is all I can do is to watch tv. The days I'm confined to my bed, or to a chair, TV and maybe surfing the internet are all I have to keep me entertained. I also read on occasion, if my eyes are friendly enough to let me.

When I'm able to move and do things, I do. I help out at my church on occasion, and I'm usually there for my friends and family whenever they need me. Just today, actually, I ran up to my father's work to help one of his friends out with a computer and radio issue he was having. I do try my best to serve God, and whatever it is his will is for me. I figure helping out others is a good way to do that.

Ann, I've been told the same thing with knowing my limits. Most of my friends do respect that thankfully, even if sometimes they go a little overboard with caring. But how you are, is how I am. Assessment at the start of the day, and from there, well I have this much energy so I think I can do that, but it will cost me later on. Maybe for us sicker ones, it helps keep us from exacerbating our MG to a crisis situation.

You guys have given me a lot to think about, and I really do appreciate your feedback.

Man, you're on the right track.

Perspective (context) is everything. Since you're good at changing it, it will be easy for you.

TV is just someone's else programming to keep you in the seat watching. Just my experience, but most aren't beneficial. TV disempowers us by showing us unrealistic examples of 'perfect people' living outrageous lives and they're full of drama.

Listen to Podcast online... learn something new like a language, choose wisdom over drama. Read books (I'll be glad to send you books in any format the topic of your choice). Listen to audiobooks, I'll send you plenty of those too. Just send me a Private Message.

God bless your efforts this week to turn this around.

DM

Oh, yes, this topic. I started typing a reply to this a couple of days ago but then started thinking about too many things and had to stop before I had an existentialist crisis. haha. So: does our reality determine what we think about, or does what we think about shape our reality?

I identify with having a serious disease because it has really changed who I am, but of course all people are complex and varied, so i don't expect that any one of the (many) things I identify with defines me by itself.

Having a disease like this is not only difficult physically, but also is a huge psychological project to take on, and there are a lot of different ways with dealing with it. For me, the easiest way to have peace with myself seems to be with acceptance (after i get through the denial and bargaining and all that mess). I understand why people talk about "fighting" a disease but I don't feel like I'm fighting, and I don't want to fight.

I was very sick a couple of years ago, when I was first diagnosed, and then I improved dramatically. My improvement felt victorious and triumphant, because I am happy that I'm not sick anymore, but I am careful to remember that that doesn't necessarily mean that I deserved it, or even that I did much to make it happen. I'm sure it was easier for me because I was in good shape and good health to begin with, which was something I worked for throughout my 20s. Or it could be a coincidence that I happened to be one of the ones that the drugs and thymectomy worked very well for. I think that, even if we know better, most of us default to associating sickness with failure or weakness. I know I would instinctively feel like I failed if I became very weak again. Also, it just seems demoralizing and terrible to be sick for years and try different treatments which don't work. it's easy to get depressed when you can't exercise or get out much or work or spend much time with your friends.

I guess it comes down to: recognizing which things you have control over and which you don't, doing everything you can to make yourself feel better, and don't be angry at yourself or feel sorry for yourself for the things you can't control. it is what it is!

as far as how much I talk about it with others, I find that I prefer for people I spend much time with to know about the disease so that they don't act surprised or impatient if I'm moving slowly or whatever. or, if I can't eat something or smile, I want them to already know in advance what the deal is and not have them asking me a million questions when I can't really move my face. but now that I'm consistently doing pretty well, my friends can see that I look well and so they seldom ask me if I'm feeling okay. I can understand it being overwhelming to have people constantly asking you if you feel okay or if you can keep going, bringing the focus back to the illness. is there a way that you can ask your friends to not bring it up so much? i'm sure they are just concerned and want to be sure you're okay, but maybe you can tell them that thinking and talking about MG a lot is bumming you out and that you know you sometimes look tired, but they should just assume youre fine unless you say otherwise, and if you need to take a break youll let them know.

it is impractical (or impossible) for someone who is more than a little symptomatic to not take that into account when you're planning your day. realistically, there are going to be things you can't do, and admitting that honestly and operating within your limits is just something we have to do. when I was first diagnosed, I thought a lot about the fact that I was sick and about my limitations, I think because it was hard for me to believe and I was just waiting for it to sink in. But after a while it felt like a mantra or something. now I can feel when I'm thinking about it too much, and have to check myself. Also, sometimes I tell myself that I'm going to pretend I'm not sick and that often does get me further than being cautious, but this works for me because I feel pretty good most of the time. I really feel better if I can keep somewhat busy, and I agree that serving others is a great help (even if I can't do work, then the theoretical serving of smiling and being nice to or doing little things for anyone I come into contact with).

well, that was a lot of rambling. I hope parts of it are helpful. :)

I try to find things that I can do to keep my mind of the disease. I know it gets hard a points, but as you find more things you can do to feel normal, you won't have the question to dwell on much. What worked for me was having support from family and friends. Sometimes I would just cry in the bathroom as a release when my MG was at it's worse, but I had to get up and try to take my life back. If you have to give yourself pep talks, just stating that you can and will beat it let yourself know that. Make sure you take your meds. Talk to your doctor about different treatments if your meds don't work or stop working. Do you have any activities that you like to do that are less physical and doesn't cause you exert yourself?

Great discussion, thank you!

This can be hard. From what you have shared, the gym would make me worse. I find the weight baring of steps is too much some days.
Swimming gives me more strength if I go 2 to 3 days a week. 2 is best.
if I have a busy week 3 days is too much. Swimming does not put the pressure on our muscles but it stimulates them.
As for tv....I remember when I first got mg I refused to watch tv.
I had to start because I had to rest and couldn't even read.
I must say
ggod diet really makes my body do better. The better I eat(no sugar or too many carbs)the better I feel. I already leave out gluten and dairy. Now even beef makes me feel worse.
Yes it is a daily thing for me....I had a busy week and now my vision is acting up. So anyway...you know how it is.