I am just grateful for the comuter, tv and all those other things that we are always cursing. I wish I knew what to say, I have not been that sick, to this point and hopefully never. When I was right down like you are, it was a different thing. My brain was fried, literally and so I could have sat in a chair and stared at the wall all day and all night, and would not have minded. So, I am not sure which is worse. I just hope that things ease up for you soon. Oh, and I guess the word is computer not comuter. HaHAHAHAHA

Hey Kimber! I hear you. I have only been dealing with this disease for a few month and it seems staying upbeat is getting harder and the frustration is increasing. I am not sure if it is the awesome weather and I want to be outside or what...but some days are certainly a lot more easy to tolerate than others. I still occasionally tell people I can do things that I forget I can no longer do! So very much agreed - that the brain is doing one thing and the body another! I know it is hard - but try to remember that we are somewhat lucky. This disease is horrible - but we are on the right side of the grass! LOL! Best of luck with finding some inner peace!!

p.s. in military speak...I wish we could all find an SOP for this disease!

I understand.
Sometimes it feels like we have to tie ourself to the couch.
I found 1 hour of activity then one hour of rest time helped in the beginning. Movies helped because it would be 2 hours of rest. I remember when I could do nothing, then half a day, and now a year later... I can finally live again for a whole day.
There is hope and light at the end of the tunnel.
Ann

Kimber,

Vent away! We understand...I understand.

Let me make it easy for you. MG SUCKS!

I hope tomorrow is a better day for you, and every day going forward...they say time heals everything.

TJ

For me when l was at my worst ,this was my most frustrating thing to deal with.....logically l knew why l was like l was,why l needed to rest ,take the drugs...blah blah blah...but emotionally it did my head in and unfortunately it was the people around me who copped my wrath.

Counselling can help with the emotional side,all the whys and wherefors mean nothing if your emotionally unable to deal with,the physical....coming here and being able to say this sucks big time helps....and l cried buckets (even when it was nigh impossible too) over the most mundane things,l just couldn't imagine things getting better,but they did and l'm sure that they will for you too.

it wasn't til MG struck that l learnt the value of a good curse word every now and again.....sometimes a whole string of them

Yes I know how you feel.It is nearly 2 years for me without a definite diagnosis--------any thing from metformin for my diabetes ,reflux,conversion disorder,to fibromyalgia.
Thank god for Mestinon therwise I dont' think i would be here. I has been so hard mentally.

Lorraine

Kimber,
Have you been tapering-down, on some of your meds?
(Maybe? A newly-prescribed treatment, would help out?)

Over the last several months, I had tapered-down some of my meds - by about 50-percent.
With the early-heat arriving, I had to boost those dosages, right back up. And that's where the dosages remain, probably for most of this year. (No big deal, I have been at that level of dosages, for several years.)
- Ross

Most of us at one time or the other are right there with you. This disease can be so frustrating and tiring.
Hang in there, better days are ahead!
hugs,
sherry

I hear you too.

When I get really fatigued, I get angry over not being able to function the way I want to and am used to.
It is like being forced to sit in time out and I am often a very pouting child when it becomes too frequent.

It does seem to go in waves, at least for me.
I hope you are nearing a big bout of stregnth very soon.

Hang in there.

Jeannie

Thanks for everyone's support.

I have not been tapering down on my meds. As a matter of fat my first dose of the day increased by a 1/2 a pill. But I really feel like that is spot on.

I have had added stress and a painful shoulder waking me up or keeping me up at night. I guess it is just taking its toll. I'm going to get the shoulder taken care of on April 10th and i'm hoping that will help things as soon as I can start to sleep normally again.

I guess nothing is simple with MG. Man this is one conceited disease it won't let any other problems steal the show! It always has to have the attention.

You are so right Kimber! I like the label-- "conceited" for this disease

I thought that same thing. that is an interesting lable. "Conceited". Thinks it's all that. Hang in their Kimber, that's always what you have said to me when I have struggled or been down. You are very kind. Hope that you feel better very soon. Love, carla

I can relate to this. My biggest frustration is not being able to work because my biggest problem now is my voice. What I do is try to focus on what I can do rather than what I cannot do. Since my extremities are doing well, I focus on strengthening them by brisk walking every morning and doing house chores. The feeling of accomplishing something despite having this disease lessens my frustrations.

Just hang in there, there are really extreme lows but it gets better. Praying for your wellness.

-Tina

Thanks all!

Tina, you're right. My voice is pretty good for now and except for the twitchy little double taps etc. my fingers are still pretty good so I can type and all that together means I can still work which I am very grateful for.

Kimber