[findinghope06]

Last night was my first experience with a meltdown related to MG. I have cried my fair share over learning about what I have but last night was new. I was at a women's bible study but my legs had been really hurting all day (dull achy pain throughout both of them) and my muscles I could tell were getting weaker. So I got a pillow from my friends room and layed on their cushioned floor. It didnt help much other than not sitting which was worse. Afterwards I got up and sat on the couch to gather my stuff together. When I tried to get up, I couldnt. My legs would work. I realized I would need to ask for help from my girlfriends to get up. I am a very independent person so asking for help is not a strength of mine. So I turned to them and before the words came out I started bawling. Literally rivers of tears just pouring down my face. And somehow manage to whisper of plee for help in getting up.

I felt terrible because I am pretty sure I snapped at my roommate who was trying to help by taking my stuff. I didnt want her to take my stuff, I just wanted help up. I felt awful. I somehow was able to drive home still but bawled the whole way home, yelling at God that I am not an 80-year-old woman and I should be able to get up off a chair without help. Then I just broke down because I knew He was crying with me and hates seeing me in pain.

It was freeing for me to feel all that. It sucks that I took it out on my friends a little but I am thankful they love me the same.

I just wanted to share that all with you.

Peace, Stephanie

[Newbie87]

we must have been crying together last night!!, lol im not sure if i am the right person to give words oif encouragement because i myself am having a terrible time dealing will all the new things of finally being dx and trying to figure things out and trying to feel better and not show that im needing help. ( guess its time to give in) but there are so many people on here that offer great advice and that have been going through this for years and shows that if god brings you too it, he will bring you through it. Keep your head up! things will get better! lean on the ones around you, they will give you the extra strength in those hard times. and we are always here.

[coffeegirl]

I'm so sorry you both are having such a difficult time. It is so frustrating having to rely on others for the simplest things in life. Humbling when you know you are a strong person normally, aching to be the person you really are though your body won't cooperate.

It is great Hope that your friends and roomate are very understanding of your illness and helpful for you. In that aspect, you have a lot going for you. Knowing that you have people to rely on makes tremendous difference. Though it may not sound like a big deal- it truly is.

Venting here is a good thing. Journaling and writing your feelings in a journal also helps release built up emotions as well. Talking to those around you who do understand can also help. You are so fortunate that you are surrounded by people who 'get it' about the illness. Crying is a good thing too. Crying helps make you feel better.

Yesterday I cried for a long time after my neuro appointment. I was frustrated, angry for not having any answers and still with the waiting game/more tests, feeling guilty for not being able to care for myself or family like I used to do and not having a support system like I wish I had. All I have really is one sister (who is there only part of the time- when she feels like it on her terms) and my DH, who just joined the boat after hearing my neuro is very concerned about my health and thinks something is definitely wrong with my body. No one else that knows me thinks anything is wrong with me because I look 'normal' when I've tried to tell them, so I've given up on telling anyone else.

Hang in there!! Please know you are being thought of and cared about by many people. You are in my thoughts. I hope you are okay today. Hopefully you were able to see your neurologist today and that someone was able to drive you there for the appointment.

Hugs and Lots of Hope-

Coffeegirl

[alice md]

one of the major difficulties in learning to live with this specific illness, is that it gives you (and many times also your physicians, and others around you) the illussion that you can keep on leading a normal or near-normal life, if you just try hard enough.

This is unfortunately not true, and the sooner you understand that and realize that you need to adapt, learn to recognize your abilities at each given moment, stop on time etc. the better.

this is an illness in which there is very little fixed weakness, but weakness can become very severe with quite minimal exertion. the kind of exertion that healthy people would not even notice they do.

even those with a relatively mild illness can't do what they did before.
and adjustement may paradoxically be harder for them, because their illness is so elusive that it is not even clear that it is there.

learning to accept the help of technical tools and aids, as well as friends and family, is required for achieving a better functional level. the amount of help that you need is dependent on the serverity of the illness, and also on how much you want to achieve. you obviously need more help if you choose to lead a productive life, than if you choose a couch-potato life style.

paradoxically, accepting some degree of dependence, makes you more independent. this is hard to see in the early days of this illness.

[coffeegirl]

Alice,

I'm not sure if I have MG or not but my symptoms are definitely there.

What you said was very informative. How do you get to the level of acceptance to where you are at? How do you get family and friends to understand the illness?

We have had situations before where we have needed assistance and understanding of medical situations and family/friends did not 'get it' at all. This really has me concerned. I h ave a feeling they will just take one look at me and laugh. All they will see is- 'hypochondriac'.

I've dealt with the symptoms for over five years. It has taken that long to get a dx. They all think it is in my head. It took my DH til yesterday to figure that out. Definitely- not sure how I will be able to get help or support in my situation and right now it is very bad. If it is the right dx, I hope the medicine will help it get better to some degree. I'm really worried- I have asthma really bad. That scares me a lot.

Coffeegirl

[alice md]

coffegirl,

you write-


I'm not sure if I have MG or not but my symptoms are definitely there.

the exact name is not that important (as Julia said to Romeo- what's in a name, that which we call a rose, would under any name smell as sweet).

What you said was very informative. How do you get to the level of acceptance to where you are at? How do you get family and friends to understand the illness?

a lot of hard work, and learning, and the decission that if your life is not worth living like that, it means that you have to make it worth living

We have had situations before where we have needed assistance and understanding of medical situations and family/friends did not 'get it' at all. This really has me concerned. I h ave a feeling they will just take one look at me and laugh. All they will see is- 'hypochondriac'.

one of the roles of medical personel is to help patients and their loved ones, to understand their illness and what it involves. this is unfortunately very promlematic with those kind of illnesses

I've dealt with the symptoms for over five years. It has taken that long to get a dx. They all think it is in my head. It took my DH til yesterday to figure that out. Definitely- not sure how I will be able to get help or support in my situation and right now it is very bad.

it took me that many years if not more. that is why I promised myself to do everything within my (limited abilities) to change the way things are. don't despair, just keep on searching for someone who will understand your illness, and at the same time learn about it as much as you can, and what ever happens don't let anyone make you doubt yourself, and your coping abilities, at least not for long

If it is the right dx, I hope the medicine will help it get better to some degree. I'm really worried- I have asthma really bad. That scares me a lot.

diagnosis is important as a first step for treatment, but either way you need to recieve proper supportive care, that will help you function optimally in your daily activities. could your asthma be respiratory muscle involvement? has ever been checked?

alice

[coffeegirl]

Stephanie

Let us know how you are today. It is okay to cry and let your frustrations out. It is okay to feel that way. Your roommate and friends seem like they really do understand.

Please take care.

Coffeegirl

[findinghope06]

Originally Posted by coffeegirl

Stephanie

Let us know how you are today. It is okay to cry and let your frustrations out. It is okay to feel that way. Your roommate and friends seem like they really do understand.

Please take care.

Coffeegirl

Thank you for all the support. Yes, they do understand (in a certain way) though I doubt anyone expected that meltdown to happen. I needed to cry. It felt really good. I hope you all have support and love from the people around you, and if you not that you know you have it here.

Thank you for listening and just letting me be who I am right now and letting me grieve the loss of certain things that weren't difficult before.

I am doing better today though my legs have been pretty stiff for almost a week now despite my meds. Not sure what is going on. The not being able to get up thing happened again this weekend (actually a few times) but Ive come to see that its okay to ask for help. Crying about it that first time really brought some healing in there somewhere.

Much love,

[coffeegirl]

Hi Stephanie~

It is good to hear you cried and let it all out. That makes a person feel better inside- letting all the emotions out on the table. I'm glad you feel a sense of relief. You are so fortunate to have people in your life who truly understand what you are going thru. And, everyone here cares and comprehends as well.

Take care of yourself. Thinking of you!

Coffeegirl

[teresakoch]

"...though I doubt anyone expected that meltdown to happen..."

"NOBODY expects the Spanish Inquisition!"

http://www.youtube.com/watch?v=sAn7baRbhx4&NR=1

(Sorry, I couldn't help myself....)

Seriously, though, what you are going through is normal - it's one of the stages of grief. I know that you don't want to have to depend on others when you are weak, but maybe it will help if you look at it a different way.

Think about what you would WANT to do if the situation was reversed, and it was one of your friends from the Bible Study who couldn't get her legs to work; if she were the one who had been diagnosed with MG. Wouldn't you want to help her? Not because you felt sorry for her, but because you genuinely wanted to help, even if it was something as tiny as carrying her Bible for her?

For so many of us, we help others in situations like that not because we are trying to earn Brownie points with the Big Guy upstairs, but because we sometimes feel helpless for not being able to do more for a friend in need. If we can carry someone's books for them, lend them an arm to lean on so that they can make their way to the car, or anything else - no matter how small a gesture it might be - then we feel like we have been able to do SOMETHING to ease their burden just a little bit.

Even though you feel "guilty" for needing the help, by accepting a friend's help you are also allowing them to feel like they aren't powerless either. Trust me, if someone doesn't want to help you, they won't offer to help! If they do, by all means let them. You'd be amazed at how much that brightens someone's day, knowing that while they can't do anything to make your condition go away, they can at least make your path a little easier.

Most people have a great capacity for compassion. If these people are your friends, then they aren't going to stop liking you. By accepting their freely-offered assistance, you are allowing them to become more comfortable with your diagnosis. And really good friends will understand that if you snap at them, you are expressing your frustration with what this disease has taken away from you - you're not mad at them.

You will reach a point where you are more "comfortable" with everyday life with this illness, but it's going to take a while. The fact that you had a heart-to-heart with God means that you are going into an "easier" phase of grief. You've given your worries to Him to shoulder for you - as you said, you felt so much better after your talk and your cry.

I had the same experience about 3 months after our youngest daughter was born with Down syndrome. The day that I gave my worries over to God - I basically told him I couldn't handle it by myself anymore - was the day that the burden was lifted from my shoulders. From that day onward, everything was much better. I'm sure it will be the same for you.