So it occurs to me that living with MG makes us very susceptible to guilt. If we do "too little," we feel guilty (am I being lazy? Am I using my illness as an excuse? Am I neglecting the people who need me?). If we do "too much," we feel also guilty, because we know we have an obligation to take care of our health.

That balance between too much and too little is extremely difficult--maybe even impossible--to find with MG for me, maybe because my disease is relatively mild. If I don't do much, I have the energy to do things. But if I go ahead and do them, I get weak and realize I've done "too much." If I don't do them, then I sit around feeling fine but not doing anything (which feels lazy).

I am trying to say that we should recognize the near-impossibility of finding that perfect balance, and therefore cut ourselves some emotional slack when we err on one side or the other. Even when we make perfect decisions, it doesn't feel right. So, you wise and sensible and strong people who are a constant inspiration to me, admit to yourselves that you're doing a great job. Onward and upward.

Abby

That's me!!! I have done so much for so many years and now things have really changed. Everyone says I am "type A". Well now I see things that need to be done and I can't. I feel so guilty!!!!!!!!!!
Mike

i think the mere fact that you feel guilty is indicative that you are not being "lazy" but rather are not up to it. The bigger struggle for me is not the guilty part but rather the involuntarily-
imposed laziness. It seems many of us on this forum are Type A personalities and sometimes I think maybe in so being, I used up too much of my juice too quick! Even before I knew I had MG I thought back to working full time, commuting 120+ miles five days per week and going to law school full time all at the same time and wondered how I possibly did it.

I had my "practice" with being a mom and working full time (and many times more than full time).

One thing I realized fairly quickly is that I am the worst possible mom when I start feeling guilty for not being home enough and the worst possible physician when I start feeling guilty for not dedicating enough time to my work and patients.

I knew that if I want to do both, I have to find the right balance and stop wanting to compensate for what I can't do or for when I am not there.
I also found out that quite surprisingly my sons, my colleagues and even my patients were very understanding once I was at peace with the way I decided to do things. They knew I will be there for them when they need me.

I had times when in the middle of clinic I would apologize to the patient and say that I have an urgent phone call from my son's teacher. And I had times when my son would bring me my cell phone when I was cooking dinner and say-mom, one of your patients is calling.

I had days when I would come home after a very hard day at work and tell my sons that I need some time alone before I can be with them. I had days when I would tell the head of my department that one of my sons has an important event and I will not be at work that day.

So, now it is this illness which is forcing me to find the right balance.

Abby, We all wish we could do more. Accepting the reality of MG is a daily challenge. If you woke up tomorrow and you were in remission, would you feel guilty for all of the times you felt guilty?

The antidote for guilt is forgiveness. Forgiveness of others and, most importantly, of yourself. And MG.


Annie

I just have to mention that I have a daughter going through the bratty teenage years who thinks its funny to make fun of me when my speech get slurry. I feel no quilt in making her help clean the house, especially the bathrooms.
kathie

Children are inherently evil between the ages of 15 and 24. Sometimes longer. Maker her work!

I for one have overdone today. The housework will have to wait. That laundry will still be there tomorrow.

Abby!

Before, I used to suffer from guilt on all counts!

After a bunch of years with myasthenic weakness symptoms and ´letting the whole world down´I eventually came round to some good benefits.

I started to excel at delegating tasks.

I am getting really perceptive of the nuances of my fluctuating energy levels and better at adjusting the world outside according to those levels of energy inside instead of the other way round.

I have noticed that I am much kinder to myself than I ever was before.

I have been a working mom since my son was born. To avoid guilt I worked hard at my career when they are at school or with their dad; and then run around like crazy when they need me. For about 16 years I feel like I was fairly successful at this. I managed to still exercise 5-6 days a week and my house was almost always clean. Then 6 months ago things started to slip. I couldn't do it all. My husband insisted initially that was because I wear myself out and I need to relax more. I feel like my house has not been "clean" since May. I know it seems like such a little problem but I only have the energy for 1 room a day on a day off, which means 2 rooms a week. I can't keep up. My husband tries to help but his idea of clean and my idea of clean are very different. Same with my kids. I am still working full time and I have not missed any of my kids events so I should be happy because that is what is important...but I really want to clean my house!
This has cause me a great deal of stress and guilt in the past 4-5 months.

Abby

I wanted to add one more thing into the pot that is in some way related....
I do also feel guilt during the times when I´m feeling better and that annoys me even more than the guilt I may have felt at not being able to do enough. That those loved ones around me suddenly have a new´capable´and positive family member instead of dealing with a constant needy complainer. I´m sure they don´t always quite know what has hit them from one fluctuation to the next........

And I think to myself ´Did I really just put them through all that?´

Anacrusis