Ticked off!

leaningin · 06-12-2009, 12:04 PM

I totally understand. About a month ago I had an acute crisis - couldn't chew or hold my head up. I asked my sister to drive me to the ER. She said she was already settled in for the nite and besides I was probably just exaggerating. I wound up in the ICU for a week and almost had to be put on a vent.

I find this the most difficult part about this illness - people don't understand how absolutely weak we are or how little control we have over how we feel from one day to the next. My personality is to push on when I shouldn't anyway and other people's disbelief in my illness makes it even harder for me to give myself a break. It makes it a very lonely experience.

erinhermes · 06-12-2009, 12:06 PM

Hey Brennan! I love your suggestion! I wish she and I could switch places for 1 day - heck, 1 hr when I feel really awful, then she'd have some idea what living with MG is like.

I mean, I truly wish I had never, ever heard of this disease, but for NOW there will be days when I feel great and other days when I feel crappy (like today).........

The ONLY positive about my MG is that I've made friends like you - it makes me feel so much better to know I'm not alone!

Big hugs!
Erin

Quote:

Originally Posted by Brennan068

Only one suggestion Erin.

Tell her where to go and how to get there. Tell her to stay up and busy for 72 hours and try "not being lazy" because that's about the amount of uptime that MG will make your muscles and body feel like. I know because I've done 72 hour shifts at work before I developed MG (not in a loooong time though).

We understand here. Sadly those without it simply cannot truly understand.

Feel better

erinhermes · 06-12-2009, 12:15 PM

Hey hon! Thank you so much for the encouragement! You are so sweet!

How are YOU feeling? Your sis is a NURSE and doesn't want to acknowledge your MG? That is so WILD! Is she your younger or older sis? My sis is 5 yrs younger, but I raised her - long story - and she truly resents the fact that I am no longer the family caregiver, but it is too much right now. I wish things were "back to normal" - but that is going to take a while longer.

I took you up on your idea! What an evening! Ate my chocolate! Watched the Smithsonian channel - it was amazing!

I'd love to hear from you when you have the time and energy!

Big hugs!
Erin

Quote:

Originally Posted by Pat 110

Erin, PLEASE don't let her upset you this much. You have been doing so good and you don't need all this stress sweetie. This is just the way she has always been and she's not going to change anytime soon. I know you love her and that's why it's so upsetting to you. I have an older sister who's a nurse no less, and she refuses to even acknowledge my MG. So I know the hurt and anger, but I had to let it go for the sake of my health. Maybe you could take a bubble bath and just relax. Then get some really good icecream, forget the diet, and watch a good movie or one of your favorite shows you have on dvd's. I'm sending you big hugs and will be keeping good thoughts.

Hugs,
Pat

erinhermes · 06-12-2009, 12:17 PM

Hey Simon!

THanks so much for your kind words - they mean the world to me! Family SHOULD understand, but some people just don't get it.....no idea why!

How are you feeling? Are you feeling strong today?

Big hugs!
Erin

Quote:

Originally Posted by TxSimon

Erin,
Sorry you have had a rough day with your sister. Hugs to you! I know that there are many people who see me and know the "old Simon" and say, wow you look so good....if they only knew how I was feeling. After I got MG, I have to look at people in a whole new way.....don't be judgemental of anyone....you really don't know what people are going thru. I have family members who don't understand also. It is tougher when they can't understand, as you would expect your family to be the ones who could understand. Hang in there and know that you have love from all of us and we understand!
Simon

erinhermes · 06-12-2009, 12:26 PM

Hey sweetie! How are you today? Are you feeling better? I'm going to write Megs a letter - that is a great idea!

I ate my comfort food last nite - felt good not to worry about my diet!

ICU stunk - no doubt about it, but it did save my life - I will always be grateful to the Methodist for that!

MY sis is not going to change. It is sad but true. I love her, but she does not get it - you'd think she would b/c our Grandmother Anderson was always very ill and had to have a heart transplant so we knew more about meds and hospitals than most, but I'm just going to focus on the P)OSITIVE and let her work out her own problems..........not going to risk another crisis - cannot do that to my son or hubby!

Big hugs!
Erin

Quote:

Originally Posted by xmas 25

please take a deep breath-vent,write and even talk to sis after to let her know agin and agin what you go through! icu-what would she have done? like everyone else i say don't waste any perfectly good energy on her! save it for the good things in your life-chocolate,junk food, or whatever brings you that good feeling!! remember you don't have to tell what goes on behind your closed doors!!

erinhermes · 06-12-2009, 12:29 PM

Hey hon! Thanks so much for understanding! That is why I love this site - I have my "pre" and "post" MG friends - my post MG friends are the only ones that truly understand!

How are you today? Are you having a good day?

Big hugs!
Erin

Quote:

Originally Posted by SharS

Hi Erin: I'm so sorry you had to go through that today, especially when you're making an effort to do something you love, working. Your sister definitely crossed the line. Unfortunately, people tend to have short memories and don't think about you being in the ICU and the consequences of a disease. Don't let this stop you from working as you can or from being balanced and not pushing yourself beyond MG limits.

Perhaps you could remind your sister that you want to work, but do struggle and can't afford to crash again, for your sake and your family's sake. Maybe you could tell her that you know she does the best she can and so do you.

Pat 110 · 06-12-2009, 12:31 PM

Quote:

Originally Posted by erinhermes

Hey hon! Thank you so much for the encouragement! You are so sweet!

How are YOU feeling? Your sis is a NURSE and doesn't want to acknowledge your MG? That is so WILD! Is she your younger or older sis? My sis is 5 yrs younger, but I raised her - long story - and she truly resents the fact that I am no longer the family caregiver, but it is too much right now. I wish things were "back to normal" - but that is going to take a while longer.

I took you up on your idea! What an evening! Ate my chocolate! Watched the Smithsonian channel - it was amazing!

I'd love to hear from you when you have the time and energy!

Big hugs!
Erin

Erin, my sister is 8 years older and I raised 4 of her children when they were very young for a few years...long story here too! I'm so glad you had such a great evening and just relaxed! Big hugs, Pat

erinhermes · 06-12-2009, 12:33 PM

Hi there! How are you feeling today? Are you enjoying your time off? Are your little ones off to camp yet - if so, are you loving being alone with your honey?

Megs will be gone for 2 weeks - that should give me a much needed BREAK - but I will miss my little neice! She is so cute! They are going to upstate NY to see my BIL's family............

Can't wait to hear from you!
Erin

Quote:

Originally Posted by Tbarney

Erin, I'm sorry this happened.

erinhermes · 06-12-2009, 12:41 PM

Hi Joanmarie! I'm her BOSS - that's one of the reasons I was so ticked off! I would fire her, but my hubby doesn't want them to move to NY and take our niece so far away.....she is like our little girl and we love her so much!

You are so right when you point out that we look "normal" so people do not understand how awful we feel.......I truly wish my sis could feel like I feel for a day or so......it would make her understand.....

How are you doing ? Are you feeling OK?

Big hugs!
Erin

Quote:

Originally Posted by Joanmarie63

Erin, I am so sorry and yes I know what you are talking about. My answer was I moved hundreds of miles away. Sadly MG is not something people can "see" like a broken leg so they don't understand it but no worries WE understand you so rant with us as we feel your pain. {{{{BIG HUGS}}}}

rach73 · 06-12-2009, 12:43 PM

Hi Erin,

whats the saying you can choose your friends but you can't choose your family!

Could be a case of sibling rivalry? Maybe she feels that you take attention away from her.I know it sounds crazy but when my sis became disabled I resented her for it and struggled to believe it could be happening. Ok I was 16, but sometimes people just dont get over the rivalry.

My sis and I are very very close now. I think because Im now ill I can see it from her side.

I say to people walk a mile in my shoes......cause I know I bloody can't.

Hope you have calmed down!

Love
Rach

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