Thanks for everyone's advice
 

I just wanted to thank everyone on here for all the valuable advice and insight which is really much more than i think anyone realizes. I am single, live alone and although i have a loving family and caring friends, this is all way beyond their comprehension. i have no one else to intelligently discuss treatment options, considerations, etc., so thanks as i cant fathom how overwhelmed i would be without the information i have gotten from here, truly a life line for me.

Thanks! Steph

I have really found this group to be a lifeline as well.
Thanks everybody.

:I-Agree:......:Thanx:

I've moved back home so I have some help dealing with things, but even then its hard for my parents to understand how overwhelmed I am. For example, if I'm trying to walk and my mom says something like, pick your feet up more or move a little faster, my immediate reaction is to lash out as I'm already frustrated. She doesn't understand that frustrated because I'm moving the best I can and thinks I'm mad at her rather than just getting angry at the situation in general.

So are you also saying you are glad you have this amazing forum?? :hug:

It's not easy to move back home after you've been on your own as your parents still see you as their baby and because of your MG they want to protect you even more. Over 40 years ago I had just graduated from college, had a great job in a hospital and was on my own. After the MG hit I had to move back home with my parents until I got married. They drove me absolutely crazy - my Dad said I was lazy and my Mom said nothing but they kept riding me to do more. I had a thymectomy and 3 weeks later I called the hospital and begged them to come back to work - they were kind and let me come a couple of hours a week to do some charting - it was my salvation - I got away from my parents. I got married, got sicker after pregnancies and they still didn't understand - they didn't want to hear about MG and my limitations and need for a little help with the children or try to learn about what I had. It never stopped and I put up with it - I think it was their way of coping - if you don't know about it, it doesn't exist. My parents passed away a couple of years ago and I was cleaning drawers and came across an envelope - in it were all kinds of newspaper articles about MG - probably everything that was printed in the last 30 years(it was a small evnelope!!). They knew and they were just as frightened as I was. We all want the best for our children and we don't want to see them suffer - your Mom doesn't mean to be that way but she is going through her own grieving process and some people get stuck at a stage of grief and can't move on. I recommend you read Elizabeth Kubler-Ross's book on the stages of grieving and you'll know what I'm talking about. Things may change or may not change - remeber, your MOm loves you in her own way and it's killing her to see you hurt. Be well.

robocar, I think you are absolutely right! I think it was the way our parent's generation were taught to deal with problems - they didn't admitted to problems, they did not deal with them head-on, they just accepted what the doctor said, and they tried to keep smiling and go on as if nothing had changed. I think our generation has a very different and probably more healthy philosophy. We do not accept things at face value, we research analyze and try to get to the root of thing, question doctors, and seek out others to talk with and deal with our problems - like this forum. This forum is a life-line.:grouphug:thanks everyone.

BackwardPawn, try to hang it there. I know it is very hard to deal with your illness. Parents never want their children to suffer. They are probably still in denial. Give them time and try to educate them slowly in how they can help your needs physically and emotionally. Let them know how your are feeling and how their actions make your feel.

Does anyone know if there is a support group for MG families that may be able to help them? I know there is an MG of Western Pennsylvania that tries to give support for some of these kinds of issue. I would try to see if there is a resource for your parents that they could talk with for them to handle the situation better.
Our thoughts are with you,
kathie

That is such a precious story, Robocar :heartthrob: Thanks for sharing it.
And that is great advice for anyone. I almost wanted to print what you wrote :)

Ever since I got this disease I've been trying to understand people's reactions to it. Most of my friends don't want to talk about it, which I find hurtful, and I don't quite know why. Here are some possible reasons:

1) They don't believe it's a real disease, and they think that if they speak of it as if it is, they'll just be "enabling" my hypochondria;

2) They believe it's a real disease, but think that any expression of sympathy is bad for me, because the more I dwell on it, the worse it will be for me. This sounds awful, but looking back I can see that I have done this to people in the past. I had a friend who, after a car accident, was confined to a wheelchair. I sort of figured that his disability was so obvious to everyone that it had become the primary focus in the way people interacted with him, and that he would appreciate it if I treated him just like a "normal person." I felt like if I was always sympathetic, that would be condescending, and it would be refreshing to him if I treated his disabilities matter-of-factly. But maybe I was cold;

3) They are from the last generation, which considered severe illnesses to be shameful (like "the Big C"), something you don't talk about in polite company, and they don't want to embarrass me by bringing it up;

4) There's a vicious circle going on: I noticed that people don't like to talk about it, so I don't talk about it; so they think I don't like to talk about it, so they don't bring it up;

5) They're thoughtless. I put people in this category when they regale me with half an hour's account of their very minor medical problems (sinus infection) but never ask how I'm doing even though they saw me fall down last week.

When I first came down with what was obviously something serious and chronic, I resolved not to become a medical bore--someone who talks your ear off about all her latest symptoms. So I think most of my friends fall into category number 4. They're taking their cue from me. I have one or two friends who want all the details, and press me for them, and I really appreciate them! But that's just me. Other people might be more private, and not want to talk about it.

Looking over this post, I think there's something not quite acceptable about it, but I'm not sure what. I have a tendency to categorize...well, everything. But it's not usually good to categorize people. I have long suspected that I have a touch of (undiagnosed) Asperger's, which would explain a lot, including my chronic state of puzzlement at other people's behavior.

Abby

Hi Abby

I have one great friend who has been with me right from the ´beginning´- She hears and is interested in every step of my journey and I in hers. In fact she has made better judgements than some of the doctors. I trust her implicitly.

I then have three friends who I talk to about all of this - usually on my initiative or as ´needed´and they are also 100% supporters. One moved abroad but it doesn´t matter - we meet or chat on the phone and it is as if nothing has changed.

Then there are about 8-10 others who I don´t particulary care if they are with me or ask me anything. They also do care otherwise I wouldn´t spend time prioritizing the little amount of energy I have that is already so precious. In fact it is to my advantage to have those friends because I love ´getting away´from it all and I welcome being the one who can listen, strategize and help them solve all their problems. It´s a relief and I´m actually glad they don´t notice or bring attention to me and my fatigable stories and symptoms.

I read all your reasons - you are highly perceptive about people & that is an honest and highly sensetive account of your observations. You are writing to everyone here......so I was just going to press the ´thank you´button - but decided to thank you in person instead!!!!!!!!!!!!!!!!!!!!!! So....:Thanx:

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

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.

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

The biggest problem is that my mom is in complete denial about my disease. Its gotten to the point that I'm barely able to walk anymore most days. Occasionally, I'll have a "good day" which means that my muscles are a little looser and I can walk a bit, as the MG is really only in my eyes at this point but the SPS is affecting everything and getting progressively worse.

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. :(

I think it has to do with the severity of our problems. My mom has friends that tell her every time their constipated or have the sniffles. And when I think about it, its much easier to call into work and say, "I'm sick today, I must have some bug;" than it is to say, "My legs don't work today I don't think I'll be able to walk in."

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.

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.

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.

That is definitely true :)

Also, sometimes true hopes comes from the most despairing situations.

Thats a real friend. Wish I had friends like that. I have a friend from high school who calls now and then to find out how I'm doing. Otherwise everyone seems to have moved on with their life. As soon as I feel better I'm gong to start socializing more (if I can still remember how at this point).

About socializing!
 

Hi BackwardPawn

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 it´s in the evening I can´t 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 one´s 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…..:Dancing-Chilli:and this…….:Talkative:

Please send me an invite! I´m definitely coming!!!!:winky: