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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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#1 | |||
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Senior Member
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Hello all! I"m feeling a little blue today. My son starts school 2morrow and I'm too tired to get off the sofa again, though I'm worried if I call my neuro I'll be back in the hospital once again - he's treating my MG very aggressively. How do all of you handle this disease emotionally? I'm thinking about going to counseling for this b/c I just feel so helpless and blue
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Erin . |
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#2 | |||
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Member
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Hi Erin,
Sorry you're a little blue today, it must be going around!! below is a link to a wonderful web site, about people who don't look sick, but in fact are, like us!!! this link goes to a page that explains how precious each bit of my energy is, it may help some of your family and friends, I hope so(also hope the link works!!) http://www.butyoudontlooksick.com/na...poonTheory.pdf I thankfully have a wonderful sister, who helps me out no end, and occaisonally cries for me, because it upsets her to see me this way, I know I am very blessed with a family who cares. I am going through a trying time at the moment, for some reason my MG is bad again, even my neuro is perplexed at how I go from great to terrible all the time. At the moment I'm just holding it together, crying alot more than usual, and getting frustrated!! I wish I had an answer for you, but I've found I just have to take the bad days as they come, because if I get too upset, my MG gets worse!!! Keep comming here!! talking to like people helps, and if you need to email me, to talk to get things off your chest, we will work something out(my emails not on the forum), most of all don't be hard on yourself, which is something that took me a long time to learn. Sorry if this is a bit long, you take care, and know I'm thinking of you!!!! redtail |
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#3 | |||
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Junior Member
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I wish I could offer some stellar advice, but I'm pretty much in the same boat...at least this way you'll have company.
![]() I would be really ****** if people (I cared about) started calling me (or even thinking) I was lazy!!!...don't they realize that we beat ourselves up enough for what we can't do? I'm sorry you have to put up with all this. You are in my prayers |
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#4 | |||
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Senior Member
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I'm sorry you're feeling bad....I hope you feel better soon! Yeah, the blues must be going around. I think that's the worst part of our disease - the uncertainty. Some days I feel like "old Erin" and then *wham!* out of nowhere I'm knocked back on my butt. My oncologist told me that Iwas a "chronic" case the last time I was in the hospital, but I just refuse to believe that. If I give up, then I don't think I'll ever go into remission. Granted, I know that our disease has a mind of it's own and all the wishing in the world won't make it go away, but I'd much rather be positive and hope for the best
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Erin . |
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#5 | ||
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Junior Member
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This is a good place to visit if you are feeling discouraged since most of us are in the same boat. My situation seems to change like the weather.
My partner also blames my former smoking habit for my problems. I was surprised when my neurologist told us that nicotine may actually be beneficial (it stimulates nicotinic receptors after all). Smoking is not so good for the heart and lungs, though. |
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#6 | ||
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Junior Member
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By the way, the hot weather seems to wipe me out. I noticed you are in San Antonio, where it is probably scortching hot. Do you feel worse in the heat?
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#7 | |||
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Senior Member
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It wipes me out too! Texas is not the place to be if you have this - not fun at all! My nuero told me to stay inside when it's hot out - impossible to do since I have a life to lead
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Erin . |
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#8 | ||
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Junior Member
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Yesterday was awful and I took so much Mestinon that I got the trots. Today I feel like I can climb Everest. I was just diagnosed 2 weeks ago and I am still trying to learn how to even things out. My neuro told me to get used to the ups and downs, but I hate them. I used to love the heat but now I need A/C or icy cold drinks.
I'm glad you're better today. Enjoy it. |
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#9 | |||
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Senior Member
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Hey there! I was feeling GREAT yesterday, but stayed home today - my stomach is in knots, so I stayed on the sofa all day - had awful stomach cramps that woke me up @ 5:00 am.....A also drink icy cold drinks all day - all day - and cannot handle the heat - it just wears me out too much. My hubby wants to go to the coast this weekend, but I'm just not up to it - I'd just be stuck in my room anyway and I am far too familiar with that. Are you on steroids yet? Cellcept? Take care! Erin
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Erin . |
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#10 | |||
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Member
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Hi Erin
Sorry I havn't replied for a while, been babysitting my Aunties 2 dogs!! My MG, at the moment is affecting my arms, hands(cant type, or use my fingers properly most of the day) legs, back to shufflling like an old lady, and chewing is just so tiring, so I eat soft easy to chew food, no swallowing difficulties yet. My neuro is bewildered as to why I constantly go from quite good to terrible. It seems just when I start looking good for a few months my body then takes a dive. He is booking me in for a one day course of IVIG, Im luck in that I have had no reactions in the past!! In regard to coping with heat. For about 5 years I lived in the bush, in an old HOT house, I use to hop in the shower in my summer pyjamas(short bottoms and a tanktop) wet my, very thick(red) hair, and collapse on my bed, when I dried off I'd do it all again. This was how I went to bed, with fan blowing on me. It was the only way I could cope with the heat, I'm lucky I now have a nice little unit, that stays cool, and an airconditioner, which I only needed to use for about 2 hours at night. I hope things have improved for you redtail |
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