...part gazillion and one.

I find it helpful to understand exactly why I'm feeling rotten emotionally. If I just generally feel a vague sense of "everything's wrong," I can't work with it, accept it, make it better, or anything. But if I know just what's bothering me, I can begin to deal with it, and even separate myself from it a bit.

What's wrong with me lately is that MG is messing with my understanding of who I am. We are having a crisis in my extended family. People need taking care of. In my mind, I'm the one who swoops in and takes care of everyone. But, now I'm not that person. So, who am I?

A chronic disease like this, I guess, gives you the opportunity to find out who you are really, and not just what you do. But until I figure that out, I feel at sea.

Abby

" People need taking care of. In my mind, I'm the one who swoops in and takes care of everyone. But, now I'm not that person. So, who am I? You ask.

Not that person anymore. Nor am I.

The guilt that comes with putting your own needs above everydody else when you could always be counted on to be there when someone needed you is hard to disimiss.

I am the most important person in the world. Say it, believe it and you can releive the pressure that puts such an emotional strain on you. It's hard because people look at us and think you look fine to me.

Give it up and restrict yourself to helping only when you are able to and it won't stress you out when you can't. Your state of mind will improve.

The people that care about you will understand. You will be surprised.

Tony

Abby, I am in the same position. I have no idea who I am these days, all my identity has been taken away by MG.

I've always been the hard working person who does everything and now I am lucky if I can read a book or communicate online with a few friends or family.

How do people discover themselves in a situation like this? Everything in my life just keeps going downhill.

I hear hope in your words and that is a good thing. I wish I had some good advice.

If you can type and work on the internet, maybe you can do something for your family online, such as genealogy, photo and story sharing, etc. People like to be connected. Maybe there is a way to support your family online somehow.

I've considered making a family website...but first of all I need to figure out my finances, I probably have about a year of savings left and then, who knows, I'll be out on the street, or maybe by then I'll be able to qualify for some kind of financial assistance or SSD, or maybe there is some sort of online job I can do to earn enough money to survive. Just now I feel pretty selfish and needy...it feels awful.to need so much help If I didn't have financial problems coming up in the nea future, I think I could figure out something little I can do to feel good about myself, something meaningful to do with my life.

Sorry...I was trying to be helpful and started getting selfish again thinking of myself...

I think we need meaning and a purpose in our life...thank you for being here to support others.

Thanks, Tony. I'm sort of in an opposite place right now. I am taking care of some people who really need me, and though it's exhausting, I am in a much better state of mind because of it. I feel like my old self.

I always hasten to add that I'm able to do this sort of thing because my MG isn't dangerous, like it is for many people here (that is, I've never had any breathing trouble).

At the same time, I recognize that a) I'm going to crash, sooner or later--I can't keep this up; and b) I'm only putting off the emotional trouble temporarily.

Abby

Abby,

Consider that this may be a good time to begin to 'break in' other members of your family and / or support group to the idea that they may need to begin to step it up. It's hard for any of us to step back a bit and let others contribute. There is a part of us that enjoyed the swooping in an 'fixing it' part.

But you have had many incidents that indicate that you may not be as stable with your medical condition as you may like to think. While your breathing has not been an issue yet - your symptoms have had their severe moments.

Do what you can now to let others begin to take some of the load that you have always carried. Sometimes the hardest thing is to allow others to do the things from which we have derived the most gratitude in the past.

Sorry - don't mean to preach...but I do understand where you are emotionally. Take care or you -- even as you take of others.

Thanks, everyone. I always heard that it's hard to ask for help, but I always thought that if I needed it, I'd have no problem asking. To my surprise, I find that I really can't most of the time--because it seems like everyone I know has troubles that are on the same level as mine.

Sue, you are right to warn me to be careful. I can easily imagine myself saying to someone else: just because you haven't had dangerous symptoms doesn't mean you won't start to. MG is unpredictable. I will try to take that to heart.

DesertFlower, I think you are thinking along the right lines. We all need something meaningful in our lives. For me, that means taking care of people, but there are a lot of ways to take care of people. It may take some imagination to think of new ways. On-line is an excellent direction to think in, especially for those of us who are able to use a computer without limitations.

Thanks for understanding.

Abby

Because in a way, it is almost as if the "old you" has died, and now you have to learn to adjust to life without that "person" in it.

We went through the same thing when our youngest was born with Down syndrome - it was as if the baby we'd been expecting "died" the moment we heard those 2 words, and we had to readjust our expectations in that instant. The baby was still there, but she was a "different" baby, if that makes any sense.

As time went on, we got more used to our "new normal", but we had to allow ourselves to grieve for the loss of what we had expected. As time went on, we learned to adjust, and before long we were just going with the flow.

That's the way I look at the MG journey - it takes a while to work through the grief process, but at some point it just becomes your new "normal". You can fight it, but it isn't going to go away.

Every once in a while, I sit myself down and have a good old-fashioned pity party - I think we all have to rage against the hand that nature has dealt us from time to time, but we can't let it consume us.

And you'd be surprised at what your family members are able to do if they don't have you to fall back on - time to let them step up to the plate and learn what they are capable of doing without you there to do it for them.

It's hard, I know - but really, it's not as if we have a choice. Our bodies are going to do what they will, and we HAVE to listen to our body when it tells us to slow down/stop. The alternative means that your family WILL NOT have you around.....

Thanks, Teresa. What's happening in my family is that my mother is suddenly incapacitated with Alzheimer's, or something strongly resembling it. She was the one who took care of everything. I am using up all my resources to fulfill a promise I made to my mother when she stopped being able to manage. At least I feel like I'm not spending myself on something that's not worth-while!

Abby

Abby, Having a disease - or two or more - sure isn't easy. It does make you a different person than you used to be. And other people often don't like that change either and don't know how to deal with it well, as you know. It would be nice if others would at least treat us normally, as if we were not sick.

Don't you love to create? I can't remember what exactly it is you like to do but I recall that you liked to do that. For me, the two antidepressants I take are writing and creating/drawing (on computer). I need to do those things in order to feel good every day. I lose track of time, and my disease, and take my mind to a place where it may not even notice that my hand is cramping up or that my arm is really too weak to keep doing it.

There are times I simply can't handle MG and rebel. But, for the most part, I have come to some kind of "ok" place with it. It sure took a long time though. I hope you can find that balance between having a good quality of your life and battling this stupid disease.

I'm sorry about your Mom. I think you know what I'm going to say. Get her B levels checked (thiamine too) and her thyroid + antibodies. A basic chem panel to make sure her kidneys and liver are ok. There's a differential for Alzheimer's or dementia that's necessary to go through. I often say that older people don't die of disease, they die of malnutrition. Things like a lack of stomach acid, celiac disease, vitamin deficiencies (from those two or other reasons), metabolic mutations or so many other reasons can make someone "out of it." At the height of my B12 deficiency, I was talking quite loudly out loud around people in stores and not even knowing I was doing it. I thought I was only "thinking" what I was saying. It was not a fun experience. And considering that you may have some genetic stuff in your family, perhaps a trip to a neuro wouldn't be a bad idea. Cholinesterase inhibitors are used in Alzheimer's too.

You've got a lot on your plate. I think we can all really relate to that. Sometimes getting a disease is a lesson others need to learn. Like how to adapt, be more tolerant, be more loving and considerate. How would they feel if they had to do this with MG every day? Except it hits more than it misses.

It's times like this when others need to be there for YOU. There are people, however, who are wholly incapable of that. So you'll have to do some "caretaking" of yourself first.


Annie

http://www.ncbi.nlm.nih.gov/pubmed/21072960

http://www.ncbi.nlm.nih.gov/pubmed/20956786

http://www.ncbi.nlm.nih.gov/pubmed/20722116

Thank you, Annie! I made sure my mother had her vitamin levels tested, and basic kidney and liver test, too. She has an excellent neurologist, and she has been very good about doing all the things I make her do. She thinks I'm a master diagnostician, and has been very patient about my every new idea. She does have Graves'--she's had it for about 50 years--and she's good about having her thyroid levels checked regularly. The thing is, she took care of her own mother, who had Alzheimer's, for many years. Her biggest nightmare was that she would get it herself and be a burden to other people. So as you can imagine, she is falling apart.

My promise to her was to help take care of one of my sisters and her family, which I'm doing. This has been very good for me emotionally, because at the same time that I'm having to reinvent (or at least redefine!) myself because of the disease, my kids are growing up. I had babies and toddlers for so many years, and someone needed me all the time. This is wearing, as you can imagine, but it makes you feel, well, needed. Suddenly I can't take care of people and no one needs me in the same way. Taking care of my sister and her kids is a temporary throw-back to the old days. But after my sister is on her feet, I will have to face the new me again.

I did spend some weeks with a therapist talking through this stuff. I liked talking about it, and maybe it helped, but I started to feel like it was time to stop analyzing my life, and just start living it, if you know what I mean.

Thanks. All of this is very helpful to me.

Abby