When am I going to learn?
 

Hi Erin
 

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!:p

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 :winky:

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!:D 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

i was just diag in jan/feb and it took me days to rake the yard. hubby kept saying i'll finish but i loove to work outside and i 'd start for 10 mins rest for 10 mins work for 10 then stop for day. it took a week or 2 but it got done. and yesI HATE THIS MG!!!!:rolleyes:

Shar, I have recommended that book too! It's such an amazing thing that this man could reason so much of this out on his own. It really makes you understand how we work against ourselves (especially early on).

I believe what many of you are going through is the denial stage. When you get to acceptance, you'll find that your priorities shift, although I STILL push myself too hard sometimes (like today?).

You have to learn that it's not just the one time thing that'll get you, too. The cumulative effect is what really does you in. One of my docs put it too me this way - I have to take at least every other weekend off (doing nothing but lazy butting it) while working, because if I don't next thing you know you have strung three weeks of physical activity together with no real rest period.

I tend to crash hard at the holidays, cuz that's my favorite time of year and I don't want to miss anything. My birthday is 6 days before Christmas, so I usually have Thanksgiving, then it's rush to do Xmas baking and shopping, then my company Xmas party, then my birthday, then Xmas then New Years! If my birthday were in the summer at least I could get ONE weekend with nothing going there.

My hubby tries to convince me to give giftcards every year, but I love all the wrapped gifts of different sizes and colors! And I love surprises - both getting and giving. That's one time of year I just haven't figured out how to pace myself! This year I'm going to try really, really hard though, because I really don't want to go through this anymore - 14 years of it off and on has been plenty, thank you very much!

Anyway, try to "do as I say, not as I do" (mamma hen again, Erin). If you have something you really want to do, plan ahead to rest up the day before (to store the muscle juice) and the day after (to rebuild the muscle juice). NOTHING, short of helping a family member who is worse off, is worth the crash - certainly not a clean floor. I used to be Mrs. Clean, but I have learned to live with some of the dust bunnies.

I am setting a one-room-at-a-time schedule for myself. I let my hubby do the regular stuff like vacuuming, but I take on the cobwebs, clear the counters completely, etc. It's not as clean as when I did this all the time, but it'll have to do! I am sick of not being able to enjoy 3/4 of my life because I over did for 1/4. You'll all get here too, but hopefully you won't have to go through as many of the downs as I have before you learn to "accept" your new limitations.

Do go online and read the book Shar mentioned. It's a free easy read, and I found it very helpful and insightful. My hope for all of you is that you can learn your limitations (stretching them a little as you find you can) and have a good life not quite so full of the ups and downs - level energy is MUCH better. It's natural to look back at "the good ole days" and pine for them, but things are as they are and the important thing is to make the BEST of this now.

Nuff mamma-ing! Love to all.

i also love xmas espec the gifts so i do buy the gift cards but put them in some thing inexpensive and gender easy. like silly socks for younger girls,some dreaded underwear[who can't use new undies] inexpensive apron or teeshirt that i iron something on personal side or a magazine with a subscription to it that way i don't have to rack my brain and body over a big gift i also get frames for lots of gifts cheap and something personal like beach or vacation ones with pics from our summer vacation where all my kids,mom,some of siblings i do like to open presents so i like to see others open also i also have started shopping online alot more for a bigger selection every year i say i'll start early but i always wait till after thanksgiving sorry for rambling on but I LOVE XMAS!!!!! as for cookies 5-6 of the girls in my family make 1 dozen per person and bring dough to bake another doz per person it goes very fast and then we each end up with lots of cookies with minimal effort/[we label bags of cookies to amke it easier and tell each other the 2 types we are bringing so no duplicates its also a fun relaxing afternoon i hope when the older ones are gone our kids will stay connected and share this tradition it's only 6 months and 1 week away so start shopping!!!!:Excited:

Xmas, what a great idea, with your gift cards ! Thank you ! I am a xmas lover also !
Mary

Wonderful ideas, Xmas. We do a 4 generation baking thing with my Mom, me, my daughter and granddaughter. My Mom says it's the main reason she lets us drag her up here to stay with us for 2 weeks! We get really crazy - tossing eggs to each other instead of handing them, etc. - all the while to Xmas music and egg nog. I like the other tradition idea too, though - once we teach my daughter in law how to cook/bake that my work!

When we have had to do cash or gift cards I have made a game of it by sending them all on individual treasure hunts. I type up rhymes to send them from one place to then next until they get to the cash, or put gradually larger bills in each place. It's gotten to where they all enjoy that more than the gifts! Not just my g-daughter, but my grown kids as well.
I have resorted to online shopping, but have had a couple of snafu's with that - got the wrong watch for my husband, didn't get one of the gifts I'd ordered - ever, things like that so between the two, I think I like the cash better for the things I can't go buy.

Anyone else have any really cool ideas?

I LOVE XMAS