[allen L]

My long time friend, one Ive known since Im around 13 y/o, came over today while he was working to give me a hard time.
He doesnt understand why I dont care to go out to the track with him anymore, why I dont call him and tell him to come over at night, or ask him to do whatever we always did.
My wife tries to explain how uncomfortable I am lately, and that Id rather be in the security of my own home, never knowing when my eyes will really go south and make it impossible for me to enjoy any activity.

He looks at me, as do my other friends and relatives and besides the droopy eye lid I had for a month, they dont look at me and find me ill, since I still go to work and still enjoy my hobbies.

I simply told him today, Im not explaining my problems to anyone anymore.
At night, its just a different thing for me, my comfort level goes down, and Im only suffering from ocular MG, but Ive grown very attached to great vision and now Im having a difficult time adjusting.

I dont know what to tell family and friends, I dont want to burden them with my small problems, but want them to understand that work is essential for existance, and my hobbies are essential for my sanity.
My buddy questioned if I consider his friendship something of value, and I told him hes acting like a girl.(no offense, its just man talk and testosterone)

How do you all deal with relatives that cant get a grip on this?
I know alot of you suffer many more symtpoms and problems than me, but having tired eyes sorta keeps one pinned down close to home when I dont have to be anywhere. Its a comfort thing.

Again, Im sorry for questions that seem so trivial, but this is all new to me.
Ive had my health problems, but always bounced back stronger than before.

[rach73]

Its really hard trying to make people understand what its like for you when your world changes so dramatically. Its especially hard with MG as almost no ones heard of it. If you said a disease they have heard of they would know it but not necessarily understand it. Think of it like this would you understand how someone with cancer copes with all the treatments- no you wouldn't, but you would be able to empathise with them.

For your friend its going to take time to adjust to the fact that there are things that you can no longer or for the time being can't do. Its also hard for people to understand that there is no cure, there is management only - treatable not cureable. A lot of people thought initially I would be able to take some pills and the disease would go away.

At the moment as well you probably have some anger towards the disease, after all you didn't ask for this to happen. Its infuriating when you feel like you are having the same conversation with someone over and over again and they don't get it (MG). Someone put on a recent post about the spoon theory which is on a website called "but you don't look sick" I suggest both you and your friend read the spoon theory- if your comfortable doing that.

As with the droopy eyelid....for 8 months I worked with the droopy eyelid and no sight in my right eye. One day I had enough of people not understanding, so I got a couple of people to tape their eye shut for one hour. Most lasted 15 mins before they had enough with bumping into things etc. I then told them try that 24 hours a day. When I tell you I can't see something I mean it. It did stop people approaching me on the right side, as they could stand there for hours before I saw them!!!LOL

The most important thing at the moment is to cut yourself and your friend some slack. Try not to push people away. Its easy when your fed up with explaining things to say enough I've had it! Given a bit of time your friend may surprise you. Since 2007 I have learnt who my friends are and they are the ones that dont take no for an answer and won't be pushed away. They are also the ones who go and look it up on the internet so they can understand your illness.

I hope my ramblings have helped

Love
Rach

[Tbarney]

Once my eye droops badly, that is when others do understand because they can "see" something is wrong with me. I wear sunglasses outside a lot.
My kids friends like to stare at me and figure out what is wrong. I am afraid I am creeping them out.

[rach73]

Hi
I wear sunglasses to if Im out in public and my eye droops as my eyebrow basically slides down my face and I look like Ive had a stroke.

People that know me are fine with it. Strangers aren't and I get sick of the sniggering behind hands.

Love
Rach

[Joanmarie63]

We ALL understand what you are saying and feeling I don't get the drooping eye {I am lucky there} but my double vision gets so bad that I gag, and the more I try to "straighten" it out the worse it becomes and the angrier "I" become. I have had this DXed for 18 years now so I guess I am mostly immune to people not understanding. My husband still gets me upset when I see him roll his eyes or stick something in front of my face to read and my eyes go crazy because they can't "focus" on cue, I have to slowly turn and focus. As I have said before, if you had a cast then they would say oh, I understand, but since people can't see the illness and never heard of it they can't understand it. At least WE are all here for each other, so please never feel bad for posting your feelings here, I think we are the only ones we can honestly turn to and support.

[AnnieB3]

Allen, Here is an excerpt from something I'm writing (so it's copyrighted). Maybe this will help them to understand. That plus the fact that you can't do too much or your condition will become worse and you won't even be able to do the things you like.

You could always ask your "girly" friend if he would want you to give up being able to see just so he would be happy again.

This is a "guy" metaphor, so maybe it'll help.

"Have you ever tried to drive to work with only a gallon of gas in your car? You may make it there but you may not make it back home again. That is kind of what a day with MG is like. Acetylcholine is the gas that makes everyone’s muscles work well and stay strong. Most “normal” people have a full tank of muscle gas all day long. If you have MG, however, you don’t really know how much gas you have for any particular day. That muscle energy could run out at any time during the day and your muscles won’t “go” any more. The only way to get muscles stronger again is to rest or take pretty awful drugs like steroids. Every activity, such as walking, talking, eating, swallowing, smiling, lifting and breathing, is adversely affected by this lack of muscle fuel. Imagine eating a meal and having to stop halfway through because your swallowing muscles are too weak to work anymore. That’s life with MG."

Annie

In an effort to be sympathetic . . . it is fairly difficult for people who love you to not be able to see you as much or do as much with you. Maybe you can come up with some kind of compromise. Like watching TV together while you work on your projects.

[justdeb]

Allen, yes I think we all have been there done that. Do know that the eyes can get better. We are all individuals. As such, we all respond differently to the available treatments. So never give up hope in that area. Having said that, why not call and invite your friend to come to the house to participate in the hobbies you enjoy?? Many times we have to deal with the changes in new and creative ways. Some good old male bonding sounds in order. and if the opportunity arises, I think I'd get a pair of reading glasses from a dollar store and scratch the lenses with sandpaper so that the acuity is reduced to what you feel is equal to what you can see when your eyes are acting up, let your friend wear em for the eve at the house there. Try to work on your car or whatever you all would normally do together when you are hanging out. Maybe go to a bar/club whatever. Let him walk a mile in your shoes.
Hope that h elps!

[djvallejo]

Rather then trying to explain the disease verbally and having to tell the story over and over I started sending out regular emails with updates on my progress and information about the disease. Try not to overhwhelm them with too much info or they won't read it.

I hope yours stays ocular, I really do. I started that way but now I am seeign others symptoms. Started with right eye, mainly right gaze double vision. Then droopy eye, sore, blurry, etc. Now I have in left eye and right eye seems to be better. I have also had some chewing strength issues. Jaw gets tired very quickly.....

Pay close attention and advise your doc when something comes up.

[erinhermes]

Hey hon! Unfortunately, I know exactly how you feel. Several people that I would have bet my life on have decided that MG is just too much and have faded to black, but others have been AMAZING!

Since we tend to LOOK normal, people just think we are being lazy or are depressed - now we all know that is BULL, but they just don't get it! It is sad, but maybe for a while just let them do their own thing and make your new MG friends - they know how you feel and won't judge you.

You have been though so much - there is just so much to learn about MG and how to improve our quality of life. You need to worry and take care of you.

Some people don't (and won't) ever get it. I'm really not trying to be a downer, but some people cannot handle the stress of having a sick friend. Maybe he is feigning ignorance in order to keep it together - regardless you have a wonderful, loving and (above all) supportive family. You also have US! We are always here for you!

Hang in there, sweetheart!

Love,
Erin

[allen L]

I hate to give myself a canary, but the neuro last monday decided to lower my dose of mestinon way down. He doesnt want me taking any before 2 or 3 pm unless I feel I absolutely cant tolerate my eyes I worked since last weds straight, only Sunday off, figuring Id be a mess, but Im thrilled to say Im feeling so good this past week, dont know what happenned. Only minor problems at night with eyes, but Ive been able to enjoy some reading, I havent been sick to my stomach from the Mestinon, and Ive had some energy even after I got home from work each night, enough that I could go outdoors and hang out until 9 pm. Im not thrilled, Im closer to ecstatic, but I dont want to jinx myself.
I felt so good this entire week atwork I called my wife and told her to make plans to get away one weekend coming up either next or week after.
(havent felt this good since late January)
As long as I stay out of the intense heat, Im doing so much better.I hope some of what got into me gets into someone else here, and makes them feel stronger.

I believe part of the reason Im feeling better is that Ive adjusted my attitude a bit, and once I had a good day or two, realized hey, maybe if I just not worry about tomorrow so much, today wont be so bad, and Im just having a good week, Im going to go home and do the finishing touches on a coffee table Im making for my SIL. even after working all day, Im going to see just how far I can take this good feeling out for a ride.(I wont overdo it)