Hey guys, guess I need to vent as I am just having a frustratingly bad day and so fed up with having to explain and "justify" the fact that I just don't feel well today while I was "perfectly fine yesterday..."= from the rolled eyes of HR to "oh I get tired too..you just need to take some vitamins." from someone that has no clue... I just want to scream (if I had the voice and energy to!) I'm hoping seeing the neuro tomorrow will help - I know I need to up the mestinon from the way I keep crashing between doses....

And what's worse I have no answer anymore for anyone who asks "How are you today?"......... Does anyone else find themselves frustrated, and out and out ANGRY and if I really admit it, depressed - (not my typical frame of mind....) and what did you do about it?

What's more I don't know how to get it across to those I work with - yep I have good days when I can be superwoman as always, and bad days when I'm lucky I can read the print on the screen let alone go out in the shop and inventory or run parts or check equipment (I manage a maintenance shop - yep you read it right - female grease monkey!).... they just don't get how I can be going downhill so quick then perk back up for a day only to be that much worse then next two..... Not to mention getting hassled about "now that you're on medication why aren't you finished with all the doctor appointments...." I just want to SCREAM.... Sorry guys - I have never in my life been in such an awkward, frustrating position - to be able to meet expectations one day and then fall flat on my face the next. I've never had to ask for help and now I am finding even every day activities are almost impossible somedays..... I find myself in tears come evening when I've dropped dinner on the floor and finally give up and sit on the couch and tell everyone get it themselves or starve (what a great site for my family to have to go thru.......)

You can always vent here!! And yes, we know EXACTLY what you are talking about!

The 'superwoman syndrome' seems to be a common denominator for many of the females here. Some of us even wonder if this could have been a predisposition to our MG. Somebody should do a study.

Anyway, hang in there. You may have to find new ways to explain and cope until you can establish something that represents 'normal'....because none of us can consistently pull off the 'superwoman' anymore!! Some days yes...but many days no. The most important thing now is for you to not will your body to do more than it actually can. That's how bad things happen. Whether we like it of not...in the end, MG has the final say.

Keep some notes, pick your priorities, and get as much rest as you can when you can between now and the next time you see your neuro. Then you can discuss if there are options or not. Remember too that stress can add to weakness. It really wipes me out more that anything else.

I know it stinks....it just is what it is. Hang in there!

Thanks Suev - somedays I've got a good grip, somedays I'm hanging by a thread....

I keep trying to turn in that dang superwoman cape but keep getting it handed back to me....

Went to the neuro today - he changed the mestinon with no hestitation - 60mg every three to four hours at my discretion (took my notebook and showed him I was keeping track and what was happening/when)... he was absolutely amazed at the difference (Its a good day for me and I was in his office at the peak of my morning dose and felt like I could have arm wrestled him and win - breezed thru the standard tests without falling over, losing my posture (that definitely improves with the mestinon-anyone ever notice that?), seeing double or turning into popeye!)

Now we're talking thymectomy and I've got to go glow in the dark again (CT) .. He's hestitating abit on this.. his reasoning that I'm responding well to the Mestinon so lets wait and see... but after everything I've read - if I stand a decent chance of improving - then lets do it and get it done BEFORE I end up crashing or on more medication with wicked side effects (not thrilled with the idea of steriods at all.....) Maybe I'm being impatient? but I guess at this point I want to be proactive rather then reactive if I can to get some semblence or idea of "normal" back.....

Oh how I wish I had the answers! Because I have those same questions!! My parents don't get it AT ALL. They won't even talk about it or ask questions. They are rude or anything, they just avoid it. And my Mom makes me CRAZY! She'll want me to do 50 things & if I tell her I can't cause I'm tired or having a bad day, she always responds with something like "YOU'RE tired! I didn't sleep well last night!" She always diminishes my issues, whatever they are, to hers. Make me MAD. Only my immediate family even knows that I have MG at the moment, not even my extended family. Wondering if I should tell them since we really only see each other twice a year, though we used to all be very close.

I, too, often want to give a truthful response to "how are you today?" I generally chuckle, as I find it amusing...if they only knew, and respond that "I am very well, and how are you?" My own little inside joke I guess.

After being diagnosed since 1992 and after going downhill over the last 4 years and having to medically retire as a lawyer, I recently "came out of the closet" so to speak. I was very reluctant to tell about my condition because I wanted everyone to still think I was a superwoman. I always said I was fine, declined invitations for other reasons than my health and basically lived a second life. I was astonished by the response from my friends. Everyone has been so suportive without being smothering. Now I feel relief that I can be myself, whatever that happens to be, on any given day.

Can a guy join the party Ladies?

I deal with the same issues at work as a man - maybe more so as I am a big strong looking chap and so surely I must be healthy right? It is a real challenge some days and I have fought to answer the question "so, how are you today" sooo many times with a good answer. Anymore I just say doing pretty good or having a rough day so far and go on.
Having a real tough day today and wife suggested I stay home - I said if I do I might as well start the disability paperwork as I feel that bad.
When you read online about MG it says most people can live a normal life expectancy - that's a far cry from a normal life!
Good luck to you all as we def understand how devastating this disease can b for sure...
Randy

Ravenred - - be careful of CT contrast dye. It makes many of us quite weak.

Be sure to tell technician at least 1 or 2 days before the test that you have MG. I did and they ended up giving me 'lite' contrast. (Don't know if it was different dye or different strength or what...but they watched me like a hawk to be sure I didn't have any issues with weakness.)

I have reached the conclusion that very few people (who don't have this illness) understand it. This includes physicians and even quite a lot of neurologists and those that see themselves as MG experts. In fact, even those that do have it and learned to live with it, are occasionally caught by surprise by the unfair tricks it plays on us.

So, how can you expect co-workers, family and friends to truly understand it?

I don't expect them to understand. I expect them to trust me that I do what I can whenever I can. I expect them to understand that I haven't changed as a person. That I am putting the same efforts (or even more) in what I am doing as I did before.

People in general see you as you see yourself, and as you present yourself to them. If you see yourself as a competent person, with physical disabilities, that are merely a technical obstacle you have to overcome, they see you in the same way.

Even if your physical disabilities are not constant, and constantly change they gradually realize that this is part of your disability, and that as hard as it is for them to live with your instability, it is harder for you. They gradually understand that your physical disability is not being unable to walk and require a wheelchair, but being able to walk a short distance and then fall down if you don't have one.

It is a log process for them and for you, with a lot of frustrating moments.
And every now and then you have to remind them (and sometimes also yourself) of your abilities as well as your disabilities.

You will probably also keep on encountering those that think you are "faking" or can do more than you can etc. And you just have to learn to ignore them, no matter who they are, or how well they think they understand you or your illness.