Hello all! Well, yesterday I was feeling GREAT, so I decided to "take on" my closet - BAAAAAAAD mistake!When am I going to learn? Seriously? I mean , I know if I try to undertake something that big, I always pay the price, but when I FEEL GOOD I don't want to lie around like a big old wart hog! Do you guys know what I mean? I TRULY miss how GREAT I felt @ 80 mgs of pred - there was no stopping me, and now a closet just does me in.......hating MG today!

Granted, @ 80 I was manic as heck, but I so miss being able to get everything "done" in 1 day! I always know when I am doing better cuz' my OCD kicks in and I go all out trying to finish up everything I haven't been able to do in a while.....I do have someone here to help me clean my house, but I miss doing it MYSELF! I truly do not know when my neuro is going to clear me for 20 mgs of pred every other day, b/c I will not settle for this being the best that my MG is going to get! I refuse! I'll even be a guinea pig if that's what it takes - and I am dead serious about that! Heck, I'll even go back for more of the dreaded plasma exchange if that's what it takes.....I do know that most people go into remission 1-2 years after their thymus is removed and I am right @ 1 yr, and then I'll read Brennan's posts and feel so hopeful! I know remission isn't going to happen to everyone - I do know that, but I would love for it to at least be a possibililty!

It has been a crazy weekend here@ the Hermes house! My ex has been staying with us, as he lives out of town, so my son is very happy, but it drives me CRAZY! It's just like having 2 unruly boys living here - my husband is a saint!

This is the first time ever that I do not have a follow up with my "boyfriend" AKA Dr. I - ever! I do appreciate that!

I think it is the heat that is really doing me in. I can't even step foot outside for more than a few min without getting really, really tired........

Sorry for ranting! 2morrow will be better - come Hell or high water!

Big hugs!
Erin

PS How many of ya'll are type A personalities? Do you feel the overwhelming urge to get it all done in a day as well?

You should check out this website, http://www.beyondthelimits.net/index.html. It contains a book written by a gentleman with myasthenia gravis. It is very interesting. In the book, he talks about the many people with MG that he has met and how many of them are Type A personalities. He has done a lot of research and has his own theories that chemicals released (adrenalin, etc) might contribute somehow to myasthenia.

He also talks in depth about how he learned to manage his days to do his best. He has passed away now, not from MG, but his son still maintains the site. My son is a research scientist in brain research. I know from him not to discount things such as this. Very interesting book!

I am one to finish everything I start, & can't look at things not right or in there place. If I can move at all, I am getting something done ! LOL....
Mary

I am so with you there. I cant stand to look at things that are messy or unfinished. Before I became sick I cleaned house at least 2 hours a day every day! My family does not keep the house clean, and when I try I end up in big trouble. So it drives me nuts. All I did the other day was the dishes and fold some laundry. I became so weak I could not walk and had difficulty breathing and swallowing. Its just not fair is it?

Oh well what can we do besides try our best while taking care not to overdo it.

Erin,
Make sure your Monday starts better than your weekend!
Simon

Hi,

I know exactly how you feel. At the hospital they tried to get me to take on a care package, someone to come in and help me wash and dress, do the cleaning etc. I said no as if you take these things away from me I have nothing. What am I supposed to do then sit and watch Jerry Springer / Maury all day I'd go Fu***ng nuts (you fill in the blanks).

Im crappy today as I helped my husband clean the car, or shall I say I supervised. I did a little bit of dusting, my neighbours must think Im a bossy cow! Plus he wouldn't let me play with the hose, men are so selfish!

I wasn't really up to doing that yesterday, but I had to do something. The mind is willing but the body says no!

Sorry Im moaning but Im fed up! Im also really suffering with the side effects of mestinon. My stomach feels like there is a knife ripping through it.

I think a lot of us just keep going until we collapse and then you have these really helpful people that say pace yourself. Grrrrrrrr! Ok Im finished.

Have a great day!

Rach

Erin, the getting it all done in one day is because since we can't control our illness we tend to try and control everything else around us, at least that is what I think. Us MG'ers have to learn and keep reminding ourselves that it is OK not to get everything done, I known in our heads it is hard, but we must continue trying, it took me many years to stop freaking because the floor needed sweeping..LOL

Erin, I hope you don't suffer for too long because of your big day. Take it easy today. We have a cleaning lady during the school year, but not during the summer. The kids and I take care of it, today is our big cleaning day.

Lat night I tried a little heavier exercising, so far I am not paying for it. I went to the track and walked/jogged a lap. I wanted to see if I could run. I could breathe OK, but my legs were so heavy. I walked 300 m, then jogged for 100 m each time around the track.

Joanmarie, I couldn't agree with you more. It took me years to just resign myself to the fact that I just couldn't do what I use to be able to do and to just accept it. Weeks ago Mary I were joking about cleaning out closets, so I started my bedroom closets and only just finished yesterday. It took me almost three weeks to do what use to take me 3 days, but I got it done and didn't have to pay for it by making myself sick. You learn as you go a long and I had to learn the hard way. It is funny thought how I always seem to know my limits when it comes to house work! Hope you all are having a nice day!

Hugs,
Pat

Hi Erin (and others)
I can SO agree with your frustrations!! I've been feeling so great lately and I'm PMS this week and it has taken everything out of me. I've had four instances of my legs freezing up, feeling like I was going to fall. It is so annoying. I've been looking at my closet (which is desperate to be cleared out) and I just can't bring myself to do it. Yesterday I couldn't do anything at all, and today I made it to work but felt really rubbish all day long. BOOOOOO on this stupid disease! I just want to be normal and not have a stupid fat swollen pred head and not have to think about crossing the street by myself and not have to remember my meds everywhere I go.

Phew - ok sorry! Self-wallowing over. I'm sure tomorrow will be a better day. Take care Erin!

I'd love to read more about the type-A personality thing.... I bet my husband would agree too.
Take care all!
~Kathy