Im not as mad at myasthenia that much these days. I havent thrown anything or cursed anyone out, not that it ever helped.(some of you people amaze me with your composure, simply incredible when I read how hard some of you get hit with this disease)
I have adjusted anything, no matter how small a task, that has become a bit more difficult with ocular version.
Driving: I dont do late afternoon appts, or any shopping. If someone expects me to be a patient of theirs, or someone needs me to assist them with anything, it has to be early. I make no exceptions, as rigid and nasty as that sounds, my comfort is very important to me.
Im lucky. I dont have small kids, my are grown and assist me, and I have a wonderful wife, although I dont think she fully understands what Im dealing with, she is there 100% for me.
Work:If my eyes go south, as it will later in the day, I will take the breaks I need. I was always very aggresive at work, staying on top of everyone and everything, not the same anymore. Id like to retire, not happenning so soon, but Ive cut my working hours down.
Hobbies, this is a place Im suffering the most. I cant participate in any sports anymore, watching them on TV sometimes gets tough, and going to live games is out of the question, Im just too uncomfortable to deal with crowds.
My woodworking is the only thing I really have left, since I was never an avid book reader, but that really strains things, and I like to come online a bit each day, when my eyes say its ok.
I limit my time with tools, and I rest often. I keep a cool room in my house all the time now, all the time, even if Im not home half a day, I make sure an AC is on and maintaining a comfortable temp in one room so I can always know I have somewhere comfortable to be.
I put a stool in my woodworking area so I can just rest and shut my eyes for a few minutes. It really helps at times.
Too much light kills me, and too little light kills me when Im trying to work on something, theres no happy medium here.
I know I only have ocular myasthenia, but lately holding a tool in my hand for a few minutes makes me feel like Im holding something heavy over my head for an extended period, and my arms just feel like falling down, so I never, ever push anymore. Not for any reason.
Stress: I still cant deal with stress, never been good with it, and still seem to have plenty of it. I think once I retire, 80% of the stress in my life will be gone.
Sleep: another area Ive suffered from for years and years, Ive always had a rough time going to bed at night. Ive tried avoiding any caffeine drinks past 5, past 3, none at all during the day, seems to have no effect on me, and I understand the risks with coffee, but Imnot giving up my 3 cups a day since it doesnt really effect my sleep as Ive experimented for months.
It is amazing how I change the tinyest things in my life. Just like brushing my teeth and shaving. Shaving and looking in the mirror is near impossble for me at times, so I allow so much more time for this.
If my eyes are tired, Ill shut them when I brush my teeth, what do I have to keep them open for anyway, but its funny the way I think about it now.
If IM watching tv, I shut my eyes during the commercials if they are feeling heavy.
I find myself laying down in a dark room so much more often these days, and my wife finds me alot sitting in the den with no lights on just sitting, not doing anything. She doesnt question it, but I explain to her it helps.
I know most of you have been through so many of these things, I just find that Im so aware of all the tiny changes Ive made that I never thought of before myasthenia, and it seems I always think of ways to ease the symptoms.
Sorry if I bored anyone to sleep, although that is a good thing I guess.

* I would like to state, that I know how bad some people have it with this disease, the incredible task it is for them to support themselves and their families, and I dont want to make it seem like my sypmtoms are all so harsh and so, but Im also suffering from this crappy disease, and Ive been such an independent aggressive personality my entire life, this is some change for me.
I spent the last 30 years worrying about having enough money to retire comfortably with my wife.
Now that worry is gone, since I dont think about vacations here and there,(once we were getting ready to retire) and nice restaurants, outings, etc. I just want to be able to get through a day without headaches and my eyes closing before Im ready to go to sleep.
Again, Id like to say I hope everyone feels a bit better these days.

Allen,

Your post made so much sense to me! I am 'adjusting' and noticing some of the things you are - - and some others too.

I was always told I talked too fast....not so much now. At times, I have to stop, take a deep breath (like I'm erasing the slate) and start over when my tongue gets untied. Sometimes I laugh when this happens (cuz the look on hubby's face really is hysterical) and sometimes I just want to throw something I'm so frustrated.

There are times I can't keep my eyes open - - and may even snooze even though it's not night time. That was never acceptable (or even imagined) before MG.

Some night's I can cook dinner, eat, and clean up. Other nights, 1 or 2 of the three is a push.

But then there are still the days when (for reasons I can not know), I am an unstoppable, bundle of energy. Those are my magic days - - the ones I cherish ... the ones I never acknowledged (let alone appreciated!) before MG.

When I was a child, anytime something unpleasant or unexplained happened, my Gram would say when one door closes - - another opens. Sometimes you just have to wait to find the open door. I grew up believing that....and still do.

Sue

Allen
I think you are so right, seems to take time to accept what you have, & figure out how to move on & have a life. Everyone here functions at different levels at different times, depending on what they have going on, it becomes a way of life.

Allen, I am glad to see you are starting to 'manage' your MG. My MG is mostly ocular as well and boy when the eyes go wayward for no reason it is very frustrating. Yesterday I was in the hosp and everytime I looked at the nurse or Dr my eyes went crazy, I just couldn't look at anything straight on, maybe it was stress, or the bright lights or the meds, I never know. The arm weakness/heaviness you feel is just like mine. But hey it could be worse for us so just keep doing as you are and before you know it you too will be positive. I am so glad you posted this, that you feel comfortable enough to share your feelings, as I know how hard that can be. Big Hugs

Its hard adjusting to the crap life throws at you!

Ive made so many adjustments now that I don't even realise that Im doing them. If someone asked me what adjustments do you make, I probably couldn't tell them as they are done all the time!

You are allowed bad days! Over the last few days I have been close to tears. Ive been sick since January 2007, probably longer. I try to limit the "why me?" days to 24 hours but at the moment I can't. Never feel bad about coming on here and having a rant.

Hope you feel good soon

Love
Rach

Don't ever minimize what you're going through! You're going through a lot! It's so hard to lose the ability to do the things that we love...I know just how you feel...I've been singing, playing guitar/piano/drums, painting and also doing sculpting since I was very young- all things that I treasured and slowly lost the ability to do (with ease)...I can still do them (well, not sing so much...but sometimes I can), but it's more difficult and I get discouraged because it puts so much strain on my back, and my hands don't want to comply...

All of these activities give us joy, and it's no easy task to accept when you know just how to do something, and you know that you could really 'rock' it lol, but your darn muscles get so tired and you gotta stop...This can be a real loss, I know...You deserve to have your time to feel upset...I hope that in your earlier post, when I told you that, 'it could be worse,' that it didn't make you feel like I was minimizing your experience, because it's a big deal to have this illness and you're suffering from it! I think that I just said that because it's something that people say, but I realize that I don't like it when people say it to me, so I'm going to take it right back from you! I didn't mean to say that what you're going through is small, what we're all going through is small...It was a silly thing to say...You vent away, Allen!

Anyway, I think that it's awesome that you're coming to terms with it...I've been trying too, but I find myself looking for a cure/alternative everyday...It sure does suck to have this MG, but I have hope that we'll all be cured one day...I've been reading about this treatment called, 'monarsen.' It's still in trials but it looks very promising...

Maybe for the arm weakness, you could try resting them on a really high table while you're doing your wood-working...I find that when I paint, it's easier to get a bunch of books and put them on my lap and put the paper on the books...It's better for my neck, chest and arms...Sometimes I put a bunch of pillows under my arm to lessen the strain...That helps a lot too...Another thing that might help, and I've never tried it because I don't really have issues with my vision/eyelids, is maybe taping your eyelids open when you're doing activities in private...There's special tape that you can buy...It would probably be really annoying, but maybe it'll help enough with the ptosis so that you can get woodworking done...Also, could lamps help with the lighting issues at home? I'm sensitive to light too...I find that lamps provide an ideal amount...

Anyway, it's good that you're sharing your coping strategies with us...I like hearing how other people make things easier on their muscles 'cause it gives me ideas...

Nicky

Allen, thanks for sharing your experiences. My experiences are similar to yours in many ways. The mestinon helps me with most of my MG symptoms (except my eyes, the mestinon helps my eyes stay open, but I still can't focus normally but only just good enough to function). I keep doing as much as possible (work, hobbies,etc) and I think the way you set rules for yourself is a good idea. I have been trying to do the same. I am very angry about getting MG, I feel like it has ruined my life and also it has come at a bad time when everything seems to be going bad...I have no resilience to stress now with MG. It is embarrassing that I can't handle even the smallest stress.

Thank you again for sharing your thoughts.

Ive been dealing with MG for 7 years now ...I believe ive went through the five stages sorta speak .No doubt i still have days of self pitty one of my worst flaws ,i try to work on each time .But i know that in the end all the negative energy is just worsening the condition and the situation .What i try to do when in doubt is use that energy and and do things that i know would benefit myself and the condition ..Example meditation,listening to music ,eating something natural ( a bowl of baby carrots) ...Hmm soaking in a nice warm epsom salt bath .Or come on here and share you feelings the list goes on ...I love to go online and just search up natural healing and lifestyle changes even sites that offer advice on stress ..

Heres a little quote for the theme:

Human life is indeed wondrous. You may be ill physically, but as long as your mental state is strong, it most certainly will exert a positive influence on your body. There may be no better remedy than hope.

Ana