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...
So I'm having some angry days. Just sick and tired of being sick and tired. Chucking down 15 pills a day (on the low side). Exhausted. Feeling like a shell of the person I once was. Friends and family try but they don't REALLY understand. Wondering if there will ever be an end to the madness.
I would really like to shoot the first Jack @$$ to write "most MG patients can lead normal lives"! Because resting after your shower is normal. Walking like a drunk when your sober is normal. Because slurred speech is normal. Because the looks a younger person with a cane gets when they don't have a cast or limp is normal. I bet in this group alone we could come up with hundreds of examples.
At home alone tonight and on a rare occasion I wanted a drink. Took me 4 tries and a towel just to get the twist off cap off the beer! I was ready to give up because I put everything I had into. I should have too. My reward? Red chest, neck and face, sweats and stuffed up sinuses. Couldn't even finish the darn thing!
I'm angry and I can't go for a long walk, I can't run, I can't work out. Pretty much I can't do anything to blow off steam. I try to stay pretty positive but some days it just sucks! I know there are a LOT of worse things out there but I'm still angry.
This darn disease is just so relentless. Can't I just get a day off to recharge? Take a little vacation and leave MG, and the cane, and the pills, and the exhaustion, and everything associated all behind?
Where is that MG? Put it down right here in front of me so I can beat the crap out of it!
I guess that's enough venting for now. But if you want a laugh you can imagine me with a kitchen towel turning red in the face, giving it all I've got and struggling to get a twist off cap off of a beer. Had to be pretty funny looking from the outside. The little hamster in my thought process was running on the wheel trying to figure out what else I could do if I couldn't twist it by hand!
Kimber
I would really like to shoot the first Jack @$$ to write "most MG patients can lead normal lives"! Because resting after your shower is normal. Walking like a drunk when your sober is normal. Because slurred speech is normal. Because the looks a younger person with a cane gets when they don't have a cast or limp is normal. I bet in this group alone we could come up with hundreds of examples.
At home alone tonight and on a rare occasion I wanted a drink. Took me 4 tries and a towel just to get the twist off cap off the beer! I was ready to give up because I put everything I had into. I should have too. My reward? Red chest, neck and face, sweats and stuffed up sinuses. Couldn't even finish the darn thing!
I'm angry and I can't go for a long walk, I can't run, I can't work out. Pretty much I can't do anything to blow off steam. I try to stay pretty positive but some days it just sucks! I know there are a LOT of worse things out there but I'm still angry.
This darn disease is just so relentless. Can't I just get a day off to recharge? Take a little vacation and leave MG, and the cane, and the pills, and the exhaustion, and everything associated all behind?
Where is that MG? Put it down right here in front of me so I can beat the crap out of it!
I guess that's enough venting for now. But if you want a laugh you can imagine me with a kitchen towel turning red in the face, giving it all I've got and struggling to get a twist off cap off of a beer. Had to be pretty funny looking from the outside. The little hamster in my thought process was running on the wheel trying to figure out what else I could do if I couldn't twist it by hand!
Kimber
And canes are very very useful for whacking people in the shins, particularly people who push and shove you in a crowd. Don't worry, they don't yell at you, because nobody wants to be caught hollering foulmouthed things to a disabled person in public. Rollators are even better, you can just mow down the crowds ;)
Not that I crack open a beer these days, but I do have a Homer Simpson beer opener that I would gladly gift to you. It loudly exclaims, "MMM! Beer!" when it flicks the cap off your bottle :D
I also want to cuss when I read an article that says Lems patients can lead a normal life.......If this is normal, I don't want to experience abnormal!
Naw... Give me MG any day! And if you are on a lot of prednisone, you are probably angry at a lot of things. 'Roid rage is a fearsome thing! I will shoot the first person who says it isn't! ;) ~Joe
But I still have to say, we have a right to be angry! We have the right to go off every now and then. Better here than to folks who just don't understand.
Will - Yeah it did take a lot of my life. Stole my active lifestyle and fun days doing whatever I decided to do. My decisions used to be based on what I had time or money to do. What I wanted. Now it is what do I have the energy to deal with and how will it affect the following days. Stole the last few good years of my military career. Stole my ability to help out all of the folks I was used to helping.
MayMay - Yep. Rest before and after. Hold the handicap shower handle while in the shower so you don't lose your balance and go through the glass shower door. Which if I may say so, has been close a couple of times! And dinner last night was chips and salsa. Uh-huh too tired to cook. And really too tired to deal with any extra dishes I didn't want to look at the next day.
Barbel - Because anything not visible or that doesn't come with a limp with your cane can't be that bad. And Myasthenic Crisis can't be that bad. After all it is just breathing that is the major problem. So just eat right and exercise that will make you all better. Don't forget to try every home remedy ever invented.
Limpnoodle - I was looking for that rubber thingy. I have one....I think. Can't remember anymore. I did try a rubber band which works great on jars like salsa etc. 1 rubber band on the lid and 1 on the jar works well. I probably just wasn't thinking right in my frustration.
With all of you guys weighing in and venting I do feel like others understand. It is helping. I will get over it. But for now I'm still mad.
I think it is healthy to voice our anger and then feel better. I usually do. It's not good to keep our feeling bottled up inside. I usually do that and than I break. This is a rollar coaster ride, and I never did like rollar coasters.
Now what does scare me is a true story that happened to a family friend. Her sliding glass shower doors got jammed! She was alone, wet and slippery, towel was across the room, neighbors that could possibly have heard her scream were on vacation. No phone, of course. Hah, I can't quite recall how she got out in the end. I think after ages of banging on the door thinking it would shatter, it finally budged.
Showers are dangerous things, my friends. Get in, get out, and look back to make sure it's not following you!
And really, I think a little negativity is great just so that people DON'T believe the websites that claim having MG is the most fantastic thing in the world. Today is the pits for me, I haven't showered in a week, but it doesn't matter because I had to cancely today's doctor appointment because of MG. I was prepared to spray a lot of nice smelling things on me and wear a baseball cap, but thank goodness I'm so bad today that even that is not an option :D
The thought of going out a window in your birthday suit is bad. I was just telling someone the other day that if I had know MG was coming I would have made different choices. Like instead of buying a house designed by the makers of granite and wood I would have been looking for one made by Romper Room! Brilliant colors to distinguish different objects, soft and safety corners and of course a nap area in each location of the house!
You are having a much tougher time than I am. I still work full time from home. I got temporarily locked out of my system Monday because of twitchy fingers. 3 bad attempts left me staring at the darn thing for half an hour until it unlocked. Fortunately I was able to join the first half of the meeting via phone and my manager didn't say anything about me not being online in the virtual room. Still made me mad.
As for those doctors appointments I think we often get ourselves looking too good for them. Then they think "well if she has the energy to get all gussied up then she can only be so bad". Let 'em have it I say.
Elinora,
I still shoot. Actually amazingly well for the first series of shots. After reloading and fatigue sets in the accuracy goes down hill. I also conceal carry. That's ok too. Because I am prepared to tell any criminal that "I don't care if I hit you in the head, toe or groin. Because regardless of what those movies show you will go down. Are you willing to chance that my first center mass shot may end up a groin shot?".
Actually, right now I seemed to have turned a corner, so I want to offer you that hope, knowing that I could turn back at any time.