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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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05-01-2011, 08:16 AM | #1 | |||
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I posted this on my personal blog a couple of weeks ago, but thought I'd post it here as well, as most of you can probably relate. I was initially diagnosed a year ago with ocular myasthenia, but it's started to progress into full-blown MG, and I just needed to vent.
I try not to complain too much, but it's hard for other people to understand how I can be "so sick" when "you look just fine". I tried to help hubby out with the laundry last night, and couldn't even fold 4 pairs of underwear before I was exhausted. And if one more person tells me I'd feel so much better if I would try exercising..... Because I haven’t had a Pity Party in a while….. Posted on April 14, 2011 by Teresa in Fort Worth, TX http://teresainfortworth.wordpress.c...ty-in-a-while/ Every once in a while, you have to rant, you know? I try not to do this too often, because really and truly I have a great life. But today is just one of those days. So please bear with me (and don’t feel like you have to read this; I’m just getting stuff off of my chest). Last edited by teresakoch; 05-01-2011 at 08:36 AM. |
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"Thanks for this!" says: | Annie59 (05-11-2011), Blessings2You (05-01-2011) |
05-01-2011, 08:40 AM | #2 | ||
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Teresa,
Wow, do I ever know what you mean! I'm in the same situation--kids are getting older, and I had plans...time to rethink everything. Yesterday I tried to do the spring clothes change-over, and wore myself out so much that I collapsed at Papa Gino's. We made a big scene. The weakness comes on me pretty suddenly. I walked into the restaurant normally, but I had to be pretty much carried out. I have a rollator, which is priceless for going out to shop for a computer, etc., because it has a seat. So you roll over to the aisle you're interested in, and then you sit while you look at the shelf. It is excellent for preserving energy--you know and I know how much energy it takes simply to stand while you're looking at something. It's especially good for waiting on line at the register. They are relatively cheap and very light, and fold up small. Type "rollator" into amazon's search box. You need one of these! Abby |
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05-01-2011, 11:58 AM | #3 | ||
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Teresa,
I'm so sorry to hear that your MG is advancing. Have you seen your neuro lately? I can't remember what meds you take now, but maybe there are some adjustments that could be made that would help a bit. I sure hope that for you. I totally understand your need to vent - major adjustments are never easy...and sudden ones even less so. We all have our moments (be they days or weeks) of intense frustration - - and maybe even depression. And I readily admit to being one of the worst when it comes to playing Pollyanna's 'glad game' with MG! RE: your kids and Sarah's situation: I am a firm believer in all things happen for a reason - -though we may not recognize (or appreciate) it at the moment. Perhaps this is my naive way of rationalizing (or abdicating) that which I can not control; but I don't think so. Maybe this is Sarah's notice that she needs to step it up a bit. It's her room and her responsibility to get it together - just as it is her education and her life to manage. Actions beget reactions and with both come consequences - - as most adults know, but only through their experiences. I do hope you feel less despair in the coming days and weeks. Please let us know how you are feeling as you are able. |
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05-01-2011, 05:50 PM | #4 | |||
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Teresa,
I am sorry your MG is getting worse. I can relate to everything you say here. It is difficult to deal with not being able to do normal things. It does help to express ourselves. It helps to put everything down in words. Thank you for sharing this bit of your life with us. I wish you well.
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05-01-2011, 08:47 PM | #5 | ||
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Teresa,
Wow, that was a very nice rant young lady! Trust me there are many of us with MG that know exactly how you feel and I think we have times we need to get that puff of steam out! I am 54 and was DG about 3 mos ago - was a relief to at least know what was going on and like you stated much better than some things it could have been. I just came off about 3 days of feeling pretty good and over did it this weekend and am having a spell tonight of weakness and trouble functioning but Oh boy it was worth it! The times you get a reprieve and feel "normal' are sure special and I hope you get a turn soon! One thing I have done all my life is carry a notebook with a running list of things I want to get done - it helps me focus and feels good when I can check off things as a gauge of accomplishment I guess. Might be worth a try as it gives one a sense of value to contribute - and yes you will not be able to do "all" that you used too but that does not mean you don't provide a wonderful and needed value to your family. I am sure they are hurting too knowing you are and if just the wisdom a mother can preach to her children is all you can do some days its still a victory that many children never get so don't feel like your not important at all times! I have a very small garden and today I was tending it and yes I had to stop and sit in a swing periodically just to get done what I would have done in a few minutes a couple years ago - but I accepted it and in the end I got most of it taken care of. Remember, happiness is what you make it and its much easier to achieve when you realize what you need in life vs what you want. You want to do so many physical things that are a challenge - yet you have a family to share your love with that you need! May the sun shine warmly on you tomorrow Teresa! Best of luck! Randy |
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05-02-2011, 07:36 PM | #6 | |||
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Thanks, everyone! I was just letting off some steam that particular day - I had received an e-mail from one of my daughters (who is already in college), and I was just PO'd. And it was a bad day physically, on top of everything else!
I really had been holding everything in up until that point, so it all came out at once. I'm really fine - it was just boiling over that day! I see my neuro next month, but I'm OK physically; it's just the adjustment that's been hard to wrap my mind around. I'll get through this - I've got a great support system, and lots of people around to help me if I need it. Thanks for the great ideas, as well! (I should also add that the "original" of this was a blog posting that was put out there for anyone to read, and most of them DON'T have MG (or any idea what it is). I just wanted to explain to them what MG "feels" like. All of you good folks already know.... Last edited by teresakoch; 05-03-2011 at 08:01 AM. |
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