Abby,

Both Annie and Alice offer sound advise. This disease is a constant struggle both physically and mentally. Every day is about choices, what can I/should I do today, what can I put off until tomorrow. Somewhere along the way we find a balance and learn to change the way we do things.

Remember you're not alone, we might not always have advice but we always here!

Rachel

Thanks, Rachel. I find wonderful support here.

Does anyone know how I can find the right kind of therapist/counselor? They have lists of specialties. Some of those lists include "chronic illness management," but the lists are so long. They seem to specialize in everything! Not sure how to go about this...

Abby

Stallatum, I am glad you asked this question. I know exactly how you feel. I have many blessings in my life that would not result in depression but it is a feeling you can't hardly describe. It is like crying on the inside but no tears and smiles on the outside. I too dread having to go to appointments. I am tired and I get overwhelmed when I know I have to do things after work. I have thought about counseling, but I honestly don't know what to say. I do get somewhat depressed when people hand over responsibilities to me when I don't want to be involved in the first place. I began to feel overwhelmed. I have been hoarse since last October and when I get tired my voice almost leaves me. It is better since starting Mestinon but my voice doesn't last too long if used. Annie and Alice are very smart people and their advice/suggestions are wonderful. Thank you for asking your question. busybusy

Busybusy, I kid my family that this has been my year of being stupid, so I don't feel very smart these days. But, thanks for the thought.

Abby, I have found that that psychologists tend to be less "clinical" and that those in private practice seem to be less "rigid." I went to an HMO psychologist once and she was actually a bit of a bully! She put me down for saying the word "should" and thought it meant I beat up on myself. Well, as a daughter of an English teacher, I like to use a lot of words. Should is an appropriate word sometimes, as in "I should not have seen that neurologist."

Try to get a referral from someone. Maybe someone knows someone. Do you have any local disease resource nonprofit? Sometimes they know good people.

Annie

I would also say that it is sometimes just as important for spouse/family members to have a therapist or someone other than the chronically ill person to talk to. A chronic illness impacts and reshapes a whole family (I grew up with a chronically ill dad and sis- bone disease)

You are so not alone in struggling with this. Although I was talking a good talk about "learning limits" and "finding balance" I about burst into tears last night when my husband told me he was going to buy a snow blower. I LOVE shoveling snow ( kill me, I know) and it has always been my thing. We have a lot of area of shovel. and he came to the realization that no matter what the diagnosis is, this is probably something that is not going away. With his back and knees, there is no way he can do it alone. It was honestly, one of the first practical things he said that showed he was accepting this and working with limitations... and it about makde me fall to pieces... silly, eh?

It seems like we all talk about finding balance, new normal vs. old normal, limits, and adaptations in our daily lives. No matter how hard we try to stay upbeat for ourselves and others, there are days that just plain stink.

Your fortunate that your husband and family understands, others are not so lucky. They have to try and convince friends and family they are ill. While you may not be able to shovel snow like you did before, I'm sure you"ll find a way to make the best of any snow shoveling you CAN do! (I totally get the shoveling thing, I love to shovel too!)

I know you're concerned about your upcoming appt. Put on your favorite Abney Park, try to relax, I'm sure you'll get your zen back!

Rachel

not silly at all. very normal. we are entitled to have a myriad (and sometimes seemingly opposing) emotional responses.
yes, you are glad that your husband understands your limitations and is ready to do something practical about it.
no, you are not happy to be reminded of your limitations and losses.

yes, I am very glad that it seems like I finally have a neurologist that realizes the severity of my illness, says it clearly without any "games".
no, I don't like to be told that I have severe MG and require treatment.

yes, I am glad that he was ready to fight so that I get the treatment he thought was best.
no, I hate being in the hospital with needles stuck in my arms, and recieving treatment that makes me feel horrible, even if I know that it may make me feel much better eventually.

completely normal and not silly at all.

How do you find a balance? How do I take care of myself mentally/emotionally without neglecting myself physically yuo asked.

I don't know if this will help you. We are all different I guess.

I could never learn to meditate but before coming down with MG but I exercized and stretched regularly and cleared my head by deep breathing and counting my breaths. And still do.

I no longer use weights but bands. And not necessarily the same strength banbs every day. Muscle strength not the same every day.

I know I we are not able to develope mucsle strength but we still can remain flexible with good range of motion because we are still able to maintain flexibity in our muscles if we work at it and I think that this is important.

The deep breathing and counting breaths eliminates all other thougths and whe finished I feel much more peaceful and eliminates a lot of the brain fog you hear about in a lot of posts.

I have no idea if this would work for anybody else mentaly but I know it is very important to for us to stay as flexible as possible.

Tony