Myasthenia Gravis Support Group
Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...
I know it has been a long time since I have posted. I should check in more often. I have been having a tough time the last year or so with coming to terms with the fact that I have slipped out of remission. I was in denial about my MG until I couldnt ignore the symptoms any longer. Then I was being stubborn about taking my medication. All that did was land my butt in the ER a couple of times.
Most of you know that I have 2 young children. I sometimes feel that they deserve better than what I can give. I cant play with them the way they deserve. A few months ago my daughter went ice skating for the first time. I wasnt having a good day and had to watch as others pulled her around and taught her how to skate. I dont know why it affected me so much, but it did. After a half hour or so I had to step outside for a moment. I just started crying. I couldnt stop it. The next few days were very hard for me. I fell into a deep depression. I was also on 60 mg a day of prednisone at the time. Which didnt help. It wasnt until my wife caught me writing a letter to my children for when they get older that I decided I needed to get help. It wasnt a suicide note. It was me just trying to explain to them that I was sorry for not being the dad they deserve. My wife thought it was a suicide note and asked me to start seeing someone.
What I realized is that I was mourning. I was mourning the loss of what I used to be. I was mourning the loss of a big part of myself. The difference between what I was experiencing and mourning the loss of a loved one is that I couldnt escape it. I needed to come to terms with what the new Jay is. Not just accept it, but learn to be OK with it. The last couple of months I have started feeling like my old self again. Im starting to not be so embarrassed by the disease. Im more willing to talk about it with strangers. I am also learning how to play with my girls without exerting myself.
I know many of you guys must have felt the same way at some point. I just wanted anyone who is having a hard time dealing with it that it does get better.
Most of you know that I have 2 young children. I sometimes feel that they deserve better than what I can give. I cant play with them the way they deserve. A few months ago my daughter went ice skating for the first time. I wasnt having a good day and had to watch as others pulled her around and taught her how to skate. I dont know why it affected me so much, but it did. After a half hour or so I had to step outside for a moment. I just started crying. I couldnt stop it. The next few days were very hard for me. I fell into a deep depression. I was also on 60 mg a day of prednisone at the time. Which didnt help. It wasnt until my wife caught me writing a letter to my children for when they get older that I decided I needed to get help. It wasnt a suicide note. It was me just trying to explain to them that I was sorry for not being the dad they deserve. My wife thought it was a suicide note and asked me to start seeing someone.
What I realized is that I was mourning. I was mourning the loss of what I used to be. I was mourning the loss of a big part of myself. The difference between what I was experiencing and mourning the loss of a loved one is that I couldnt escape it. I needed to come to terms with what the new Jay is. Not just accept it, but learn to be OK with it. The last couple of months I have started feeling like my old self again. Im starting to not be so embarrassed by the disease. Im more willing to talk about it with strangers. I am also learning how to play with my girls without exerting myself.
I know many of you guys must have felt the same way at some point. I just wanted anyone who is having a hard time dealing with it that it does get better.
Your posts about trying to deal with MG now and when you first were symptomatic are very helpful to those of us who struggle with "life with MG." I look forward to the day when I can plan a day that takes into consideration my limitations (ideally none related to MG) and not have to be reminded over and over again that there are things I used to do or a face I used to see in the mirror. I believe that day will come, although I don't go so far as to anticipate a medication free remission. But there have been days when I have had glimpses. Of course there is also that handful of pills on the table every morning--just to keep me grounded :-) Take them each morning with a big dose of hope! Thanks for reminding me. b.
Yes - it is important to come to terms with this dastardly disease - and to find a way to be okay with it.
It's just human nature, all of these feelings. All of us here - we're all coping with a chronic illness - that sometimes - can force major changes - in how you live your Life.
You are not alone.
It's normal to wrestle - and even to struggle - with these issues.
And you are adapting - in very healthy ways!
Way to go!
- Ross
@bweeds- I get those days too. When I almost feel like the old Jay again. They do give hope. :)
@snowbelt- You always know how to say what I need to hear. Dastardly is the perfect word for it.
You know what I miss? Singing. My voice isnt the same as it used to be. I have zero range and my voice even sounds different. When I sing now I sound like.....MY WIFES SINGING!!
Oh, the horror! :D
My kids still like it though. They dont know any better. They even like it when my wife sings! :)
But we all mourn our lost selves when we get this disease, and we go through the five stages of grief, with the last one being acceptance. Stage #4 is depression! So, for sure, we have been there and done that and got the t-shirt! ~joe
So now that I'm able to do more than I could last year, I make sure to make the most of my time and energy when I have good days! Sure, I miss the smile I used to have (It was pretty frickin awesome!), but MG has taught me to be thankful for where I am, especially considering the alternative. To quote the movie Saw: "Most people are SO ungrateful to be alive. But not you... not anymore..."
Good for you, Diz, for identifying you feelings and working toward acceptance. It can be depressing to think of all the use-to's but the fact is that we're here and able to fight another day!
Be well,
Bob
I'm new here, a mom of 3, and I can SOOOO relate. I'm really thankful, too, for this group and all the sage advice, kind words, gracious wisdom... A few years into this and so many ups and downs...
So many adjustments...
So very, very thankful for a support system like this and a safe place to speak and listen...
Best wishes to you..
Koev
Finally at my sons wedding in april i realized life will pass me by if i let it or i can particapate and enjoy it as much as possible. It also hit me that there are others who have it much worse than me.
I started to thank God for what I could do and found myself having a good time at the wedding and visiting with new relatives several days(out of state wedding).
My husband got me a wheelchair last thanksgiving which didn't help my funk cause i was embarrassed and felt very old and kind of like a faker... i am not paralyzed do i really need this? Now i acceot it and am grateful to have it so i don't get worn out on long excursions.. i can enjoy what we are doing- shopping, museum, etc and have energy to get around, cook etc when we home.
I also don't care about what others think anymore and gave up trying to make everyon try to understand what i am going thru or feeling. It only matters what my immediate family thinks ( and the people i work for) and they all are great with me .
Also miss the singing, today I tried to sing happy birthday with a 2 yr old, I was shocked i couldn't keep in key at all, fortunately he smiled and thought i was awesome!! Again I thank God I work with young kids who love you no matter what as long you are fun (silly), caring and give big hugs...these I can do!
After 1 1/2 yrs I am finally STARTING to learn what my limitations are, how to adjust activities... to do as much as possible without going backwards later in the day or the next day. accept myself for who i am!! Also cellcept is starting to kick in some--hope!!
your kids will have plenty of fond memories with their dad when your nieces visit,plus with the scooter you all can go to front of line at rides.Enjoy!!
I'm an un diagnosed mother of 3 and know your struggle as well. It is the cross I have had to bear for the last 6 yrs....only it became lazy, hyperchondriac, etc. Even if its some other illness, its an illness. I always tell my kids "everyone is different...like a box of crayons"! I guess that includes parents, too. We each come with our own strengths and weaknesses. Navigating your life around them is the skill. I hope our children will learn empathy and compassion
Just did Disneyland with my oldest grandson & first time since we have been go there had to use a wheelchair. It wasn't that bad. Got a big hug from Pooh Bear.