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)

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.

Oh Gosh Abby you hit the nail on the head!! This is exactly the trap I feel so often and now in the past months more since I got worse in March. The reason I had that big flare was at least in part from trying to increase my activity. My strength improved because I was back on mestinon in a safer manner. So I tried to get back to the dentist for the many appointments I needed to get my teeth fixed. About 2 weeks into that and long long appointment at the univerisity on a Firday the flare hit and on Monday I tried to drive and my vision was messed up as it remains today. Double vision and all. That is the scary part for me. How can you even want to do more when the consiequesnces can be devastating?

I had been on steroids until 2-3 weeks prior to this for my cataract surgery. I think that may have been a factor in the flare as well.

Annie59

Alice md this is truly eloquent............words I would like to share with my youngest daughter who unfortuntely wants a firm diagnosis before she really helps. I missed her daughters last birthday.

The next time I saw her while taking me to an eye appointment, I brought up going to the daughters recital. She angrily said "well only if you know you are REALLY gonna come!" I tried to say a bit about what happened that day. My breathing was so bad and the rest of me so intensely worse I knew it was dangerous to go. Also I couldnt talk from a strength issue.

I messed up I guess as I didnt call her the next week after the birthday. But I knew she would be very angry so I couldnt. I know the anger is about her being very afraid of where this will go with me this sick. I cant always deal with being strong enough to rise above and handle the angry. She very well know I would have to be near hospitalization to miss a grandchild b'day party.
Annie59

[QUOTE=alice md;723052]I have said it many times, that one of the major problems I see with this illness, is the fact that it gives you (and many times those around you) the illussion that you can do much more then you really can.

this "tight rope" walking of finding the way to do exactly what you can, not less and not more, is a nearly impossible task.