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
Yep we have all had the crazy, lazy, in your head experiences. And don't think everything is bad. We do learn to manage. We do learn to make our lives as normal as we can. There are lots of good days. Days are better when we are determined to not let things bother us and make them better.
Lots of us only have the folks here that know or understand what MG is. Welcome to the family. Use this forum to share and vent and question.
Kimber
Let it out! This is the place to vent. Then pick yourself back up for tomorrow. No one can keep it bottled up 24/7. My friends and family don't see the angry side of me. Make sure you keep something to make you smile near by. It is important!
I hope you stay on here, and post often. Welcome aboard!
My most positive thoughts are headed your way!
Kimber
I was near death...couldn't eat, swallow...move or breathe without a respirator.
It will be 3 years this August and I am now swimming 3 days a week and taking my first plane trip alone.
THERE IS A FUTURE
It takes a long time for treatments to take effect.
Love to you all
Ann
You will find tremendously helpful and understanding people here.They have all been through or are going through what you are going through.They have helped me on my darkest days to get up fight for more aggressive treatment but still accept the problem ie.that is MG.
Lorraine
I really could relate to this thread in particular! Kimber, Arnie, and others that have vented on here - I totally get it. I am so early into the diagnosis process that I'm actually grateful to have options now (after doctors not being able to figure this out for 2+ years), but have felt all the frustrations you have about not being able to do normal things. My doctor was very optimistic about being able to return me to "normal life", but it's good for me to see the reality of others' experience and that it's not always rainbows and kittens after starting treatment.
MayMay - I have to add how much I loved your comment about "spring spa day". Hilarious - and great way to look at it! We will adopt that phrase in our house :) Just yesterday couldn't shower on my own (even with shower stool), had to get the hubby to come in and wash my hair. I guess I am lucky that he doesn't mind the extra shower time ;) Trying to see the bright side in these frustrating circumstances that define our lives as myasthenics.
Anyway, just wanted to chime in, excited to get to know you all! :)
Tomorrow brings promise of a new day.
TJ
Nice!
I'm glad I found this site. I have been very passive on the topic for a very long time, and I don't know why. You're all going to think I'm crazy, and I'm one of those people who probably shares "too" much! I am almost 37 and was diagnosed when I was 15, so I as I read the posts I "relive" all those feelings, both emotional and physical, and I don't know now, which is worse. At the time, the physical was worst, but as I unfortunately learned, the emotional outweighed those in the end. Yes, you all have a right to be ANGRY. No, down right PISSED OFF. YES, you do! I am! Even now. Of course I am! You're each, from what I'm reading, going through different phases of the disease. It IS a big deal for those who've you have said have had friends or family that have diminished or minimized it. Until you live it, you don't know. That is the only clearance or forgiveness I give anyone. You just cannot explain it. I wish I had enough time to go into the last almost 22 years of my life, including being diagnosed at 15, spending 3 weeks at Mayo Clinic while losing 20 lbs of my then (ha ha ha!) 120 lb 5'7" frame (what I wouldn't give to weight that now! :), having a thymectomy and being in ICU, then going "home" to be "normal". I went away to college on my own for 4 years, moved to Chicago on my own, and suffered and did it! It SUCKED, but I did it on my own! Nobody was going to stop me dammit! Don't let me fool you, I was miserable:) Then I found my then to be future husband and shortly thereafter, my then to be future Dr., and my life has CHANGED! Yes, I take mestinon 6x a day,2 pills at a time, including time span mestinon 2 x a day. I take 15 mg prednisone daily, and I do plasmapheresis every 5 weeks ( I was doing it 3x a week while pregnant). I had 2 surgeries to have fistulas put in to help the plasmapheresis. They both failed. My husband says if I didn't have bad luck I wouldn't have any luck at all right? Is it ideal? Hell, no. Is it life? Yes. I try to remember life before MG, and I cannot. Maybe it is because I was so young and have lived with it longer than I have lived without it. I tried to lower the "roids" three times now and could barely walk or breath. Those are the days I remember MG and the worst of it and hate. Those are the days that make me thankful for drugs such as prednisone and treatments such as Plasmapheresis. I will take all that any day of the week to live and have a good quality of life. For those of you who are suffering worse than I or who aren't there yet, continue to be an advocate for YOU and find the right Dr and the right mix of medication and treatment for YOU and DON'T GIVE UP. Life CAN be normal or as close to it as we know with MG. No, it isn't what "normal" used to be. I get that. Yes, I've been there. I could not lift my arms to wash my hair. I could not swallow solid foods or dress myself. I have fallen down more times than I can count. My husband has literally pulled me off the toilet more than once - so hot right?! :) I have been picked up off the ground, off of a chair, out of the bathtub by my father when I was 15 (humiliating!), I HAVE ATTEMPTED SUICIDE. Yes, you read that correctly. It was so "bad" in my mind that I tried to kill myself at the age of 16. I was taken to the hospital and had my stomach pumped in front of my parents. What could they have been going through? I still ask myself that question. What the Hell was wrong with me? I was young and scared. That is where I have been. Since then where have I come.... I am a 36 year old woman, with an MBA and a career, married to a wonderful man, who loves me, supports me, but doesn't for a second allow me to feel sorry for myself. THAT is key for me. We have been married almost 8 years, together almost 13 and have a 5 year old daughter, Julia. She is our life and was almost the end of me. Had I not gotten pregnant with her, I would have not hit my worst with my excellent Dr and therefore be on the treatment I am now. Yes, I will repeat it again. It sucks. Sucks bad. But my friends, this is the hand we were dealt. We choose how we deal with it, bad times and good. We choose the Drs who help or don't help us. We choose who we keep company with and make this journey worth living. Ahhh, now for those of you who have just read this and are even more pissed off, I get it. I do. I hope and aspire for you one day that you're not angry and you can get to the point I am. Am I happy? Yes. Did I get shafted? Absolutely. But life could be worse right??:) I hope to hear from you more, obtain advice and wisdom and hopefully can give you the same! Cheers!
I know so far I'm blessed to have a doctor get me this far after five months. Still tests to go. Doctor on vacation for three weeks so I await test results on blood work, my first test for MG specifically. I found these postings while looking up prednisone as I had it when I had a terrible hive reaction to the flu shot many years ago and made me want to fight, which is not a normal characteristic for me. So glad I found this as I see its typical of that medication. Not sure how I will deal with that if needed.