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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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10-07-2012, 02:45 PM | #11 | |||
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Abby I have just one friend who is really interested in my condition. We play ping-pong together. We also take trips to near-by casino for a little gambling usually 3 days. He is always concerned about my endurance and if I have taken my meds. I think we enjoy eating at Paula Deens more than anything. Of course there is my wonderful wife who watches over me like a mother hen. There are others who know of my condition but these 2 are the only ones I confide in.
Mike |
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10-07-2012, 03:08 PM | #12 | |||
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My parents are 89 years old, and I make an effort to hide my problems from them. Their problems are far greater than mine. The only person that I can really confide in is my husband, and he gets too worried so I don't talk too much about it. I feel pretty alone here.
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10-07-2012, 05:12 PM | #13 | ||
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Thanks, guys. It looks like my experience is pretty typical. I think the reason it surprised me so much that no one wants to talk about my MG is that I've spent so much time listening to the details of my friends' medical problems. So I thought it was normal for people to talk about their illnesses, and to listen to each other. Evidently it's not.
I still don't know if all humans feel like they're in a Star Trek episode, doing an away mission on an alien planet where the culture is weird and foreign and trying to extract generalized rules of behavior in order to fake it and pass for a native...or if that's just me. On the other hand, apparently I'm a good friend and an exceptionally good listener. On the other hand, the next time a friend asks me if this illness still makes me feel tired in the evenings, I'm going to say, "The problem is not that I get tired, but that some of my muscles become temporarily paralyzed." Abby |
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"Thanks for this!" says: | southblues (10-07-2012) |
10-07-2012, 08:12 PM | #14 | ||
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I really need a wheelchair/scooter to get anywhere anymore, but my mom is trying to talk me out of getting a script for one, saying I have an occasional bad day when the complete opposite is true. Then even on good days, I'm in constant pain, but she doesn't want to hear about it. I actually put off the sleep apnea testing for about a month because she said I had so many appointments, I couldn't miss more work (to which I agreed), until she mentions to me that its a good thing I sleep alone because they can hear me snoring between two closed doors. Last night I tried to discuss with them the two options I was given by the urology team as to what would happen when they remove the catheter, if the problem isn't resolved. She completely shut me down and said I'd make a decision at the time, that I can't go in with a defeatist attitude. I don't see my attitude as defeatist, I think I'm being realistic and don't want to make a spur of the moment decision, the team obviously agrees, otherwise they wouldn't have given me my options four days in advance. Anyway, I'm trying to keep my spirits up since I meet with the stiffness expert next week and hopefully get the BiPAP machine, as well. Maybe this last PLEX will go better than the previous one did, too. It just gets hard as things drag on with no end in sight. |
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10-07-2012, 08:19 PM | #15 | ||
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People want to hear about problems they can relate to. "Your constipated, oy vey, I hate that," as opposed to, "what do you mean your legs don't work?" When I called in Thursday, I just told my boss there were complications with the PLEX. I figured that would be a whole lot easier to explain than telling him my bladder muscles stopped working due to one of my neuro-muscular conditions. |
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"Thanks for this!" says: | Anacrusis (10-08-2012) |
10-08-2012, 02:12 AM | #16 | |||
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From my personal experience, those around us (family, colleagues and friends) accept our illness in the way that we do. (many times with a lag period).
I now, mostly see my illness as a technical obstacle and this is the way most of the people around me see it. I made them understand that there are times in which I am severely disabled, but many times in which I am fully capable of certain tasks, as long as I do them with proper accommodations and don't push myself beyond my limits. I have reached a point where most people understand I need to prioritize and even help me do so. But, reaching this point took a lot of work, patience, frustrations. |
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10-08-2012, 05:12 AM | #17 | ||
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I have bouts of sudden coughing when spit goes down the wrong way.
My husband tells me I just need to get out of this bad habit and then I will be OK. I have a friend who took all my notes and graph of symptoms and was supposed to look over them when I had no one else to turn to. When she did not get back to me I started to feel very despondent. 3 weeks later she turned up on my doorstep with all my papers. Not only had she studied all the details, she had also spent much time researching MG on the internet and ended up knowing more about it than me... Sometimes the ones you expect support from let you down, and sometimes support comes from the people that you would least expect. |
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10-08-2012, 08:37 AM | #18 | |||
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Also, sometimes true hopes comes from the most despairing situations. |
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"Thanks for this!" says: | Anacrusis (10-14-2012) |
10-08-2012, 01:34 PM | #19 | ||
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10-14-2012, 03:33 AM | #20 | ||
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And I always feel like everyone else is partying!! I went to one party in 2010 and one in 2012. When I had chronic fatigue there were was no form of socializing whatsoever during the course of two years. Now, if I meet with friends it has to be over a coffee and earlier in the day. Max twice a week. If itīs in the evening I canīt have anything else on that day, the day before, or the day after!! I can understand how energy levels, swallowing problems, speaking etc etc can greatly impact oneīs social life - especially the younger ones here. There are so many great people here, some of which I would want to hang out with in real life! (but in myasthenic time!) So if next weekend you were to organize a party on this forum - Then we could all do this…..and this……. Please send me an invite! Iīm definitely coming!!!! |
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"Thanks for this!" says: | pingpongman (10-14-2012), southblues (10-14-2012) |
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