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In the same boat
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. |
Hi Brennan!
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. :D
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:D Quote:
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Hi Pat!
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:D Quote:
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Hi Simon!
Hey Simon! :D
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:D Quote:
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Hi xmas!
Hey sweetie! How are you today? Are you feeling better? I'm going to write Megs a letter - that is a great idea!:D
I ate my comfort food last nite - felt good not to worry about my diet!:D 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:D Quote:
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HEy Shar!
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!:D
How are you today? Are you having a good day? Big hugs! Erin:D Quote:
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Hey Tbarney!
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?:D
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:D Quote:
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Hi Joanmarie!
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:D Quote:
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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:hug: |
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