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 got a question for you guys. How do you guys get by, or cope with your MG as an everyday thing. Does it consume your time, your thoughts? Do you worry about it, like if I do this, I'm going to have to suffer later, or I need to focus on this just so I can not fall or look foolish, or even feel foolish? Does it kind of taint the way you see the world?
Yep, lots of questions, but the reason I ask, is because I worry that I have let it effect me in this way. Not to say I'm consumed by it per say, but I do think about it a good bit. Like when I wake up, I assess, and determine based on that what I can and can't do today. I push myself sometimes out of fear of depression, and sometimes it works out alright, and other times it backfires. At the end of the day, when all is said and done, it feels like it is the central focus of my life, and I'm not happy about that.
I want to know if that is normal, or if there is a way I can alter this, so that I'm more focused on enjoying the life I've been given, rather then focused on it. I keep having this idea that I am going to beat it, but I know I can't. At best it is burnt out, by this point, as I'm over the 10 year mark, and honestly, I haven't gotten too much worse in the last 2 years. After the initial repairing the damage my ex did to me, I've been pretty even keel.
Some days are better then others, some depend on how hard I go at the day, life still is a struggle from time to time, but I have been trying to just enjoy it, and not focus so much on it, but I find I'm at a loss on how to. Everyone I know asks how I am, and all more or less remind me I'm sick. Like if I go for a walk, and I'm breathing heavy, I get asked do I need to rest, you look tired and weak, and seem to make it a central focus again, even if I know I'll be ok. Things like that. I want to let go, and not let this stupid disease define who I am, or what I am as a person if that makes sense. So I'm curious how you tackle this challenge, and your thoughts on it. :)
Yep, lots of questions, but the reason I ask, is because I worry that I have let it effect me in this way. Not to say I'm consumed by it per say, but I do think about it a good bit. Like when I wake up, I assess, and determine based on that what I can and can't do today. I push myself sometimes out of fear of depression, and sometimes it works out alright, and other times it backfires. At the end of the day, when all is said and done, it feels like it is the central focus of my life, and I'm not happy about that.
I want to know if that is normal, or if there is a way I can alter this, so that I'm more focused on enjoying the life I've been given, rather then focused on it. I keep having this idea that I am going to beat it, but I know I can't. At best it is burnt out, by this point, as I'm over the 10 year mark, and honestly, I haven't gotten too much worse in the last 2 years. After the initial repairing the damage my ex did to me, I've been pretty even keel.
Some days are better then others, some depend on how hard I go at the day, life still is a struggle from time to time, but I have been trying to just enjoy it, and not focus so much on it, but I find I'm at a loss on how to. Everyone I know asks how I am, and all more or less remind me I'm sick. Like if I go for a walk, and I'm breathing heavy, I get asked do I need to rest, you look tired and weak, and seem to make it a central focus again, even if I know I'll be ok. Things like that. I want to let go, and not let this stupid disease define who I am, or what I am as a person if that makes sense. So I'm curious how you tackle this challenge, and your thoughts on it. :)
I don't have any real activities that don't really cause exertion. Just cooking dinner can wipe me out some days. I used to last year play a game that got me walking around Philly, and I'm thinking I may get back into it and see if that is less stress then the gym. Overall though, any kind of physical activity for me comes at a price later. While I happily accept that price, it can be challenging. My only other hobbies that I do enjoy is gaming, and doing puzzles, both of which I do on a daily basis. I also have been reading more, so I do have a few things that don't require me to move much.
Ann, I agree, the gym does make me worse. Last weekend was probably the worst I've been in a good 6-7 years. I was having one of my really good days and more or less went full throttle for a little while. A couple hours later, however, I really regretted it. I wound up on the floor for most of the night, and it took 3 hours for me to inch across the floor, once I got a little strength up, pushing my walker ahead of me, to get to the stairs, where I crawled up and pivoted myself into it to get to bed. Needless to say, that wasn't a fun night.
In the end though, it seems to me we all have our ways of coping with this, and it has given me a ton of insight. I'm really thankful and glad to be apart of this group, and while I'm not always around, it is good to know that you all care as much as you do. I definitely feel at home here. :)
I have been sick for 6 years, and the first few it consumed my attention...what was I doing wrong? What was triggering it? How could I help myself? And so on.
When you are first sick you try going to doctors, but if they do not immediately know what it is they pass you off...at least they did me until I ended up feeling like there was no help.
Year 3-4, all I wanted was an answer...a name, even if their was no treatment...I just wanted to know what was taking my life.
By year 5, I had enough abnormal labs that I really couldn't stomach much more. Doctors weren't helping, and I just wanted to enjoy what left I had of my life the best way I could. So I forgot about being sick...I still assessed my "spoons" for the day, but I didn't think of my situation.
By year 6, I had a new doctor...she has been great, and I am now being trialed on Mestinon (which is working great so far). However, I find it a bit challenging to again begin thinking about symptoms for this new doctor.
How do I transcend being sick...get involved in things that have nothing to do with illness. My daughter had a baby, so I became a gramma, and I immerse myself in baby things. Going to playgroup, I am just one of many people there and I am not known for the sick one or what sickness I have.
Years allow one to get used to what one cannot do...and to partially forget how well one used to do things. Now there is just how I can do things...even if it is longer, more multi-stepped than before. Like, I can walk with the baby...not far...but by focusing on the baby, I only walk with her...rather than focus on how hard it is.
When I feel symptoms are out of my control, I try to take control by doing PT or the PT exercises...this gives me the illusion that I have some control over how fast my life sinks.
When it gets me down, I think of it as weather...so it is cloudy inside.
I also try to be patient with myself...and, as odd as it sounds, "friend" myself. When I am having trouble walking, I think of me walking beside me...encouraging me, "we will get through this." I say outloud, "courage is the willingness to try again tomorrow," saying it outloud, silly as it sounds, affects one as though someone else said it. When things were really bad I put postys around the house saying "It will be ok"...oddly enough, it helped.
I also, by nature, am competitive and sort of internally refuse to let it win.
I do yoga. Seems silly to some, but it helps restore range of motion and brings a sense of peace. And I try to meditate.
I try to choose on purpose to find happy, or joy.
You are more than your body. Bodies break down...but you have a verve and specialness that is you, that transcends whatever your body is going through. The disease is not personal.
Also, as we get older...it helps to know that many others are struggling with their own things...this is just our struggle.
Also, it helps on really bad days to do something nice for yourself.
Hope something in that helps. :)