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Advice:
How do I cope? Keep getting weaker....
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I am at the end of my tether...I can't seem to do anything. Had a bit of strength yesterday evening but it is all gone and the doctor says she has no earlier apts than my apt in mid Feb... I don't feel i can wait that long, and I do NOT want to go to the hospital where they will stick a tube down my throat and pump me full of Prednisone, or some other steroid, which I simply can't tolerate. I am going mad, it seems, as this disease has been a long time coming on and so friends have moved out of state, etc, and I have been too weak to do the things that would allow me to make new ones. My only family is my elderly mother, who has a heart condition, but is here for me; but due to age, etc is of course limited, bless her heart. Without her I most likely would have died by now.... I also have a sister who is distant in both geography and emotionality...we have never been close and she just doesn't get it. (Or want to.) All we talk about is the weather...I am not kidding. I seem to be stuck in an utennable place, some Kafka-like hell that I can't escape from. I don't know what to do; I have trouble breathing, swallowing, standing, etc, etc, etc, and I don't think I can make it to mid Feb when the new neuro finally decides she ewill see me.....
Posted on 02/01/11, 02:50 am
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Advice:
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Reply #1 - 02/01/11  1:20pm
" I know just how you feel. I am 61 years old and have been married to a wonderful, supportive man for 34 years. He has been through a lot of things himself. He had lymphatic cancer 10 years ago and was diagnosed with pulmonary fibrosis about 6 years ago. About 4 years ago his gall bladder ruptured and was gangreen. He almost died all because of a doctor that refused to treat him for anything else but an ulcer (we have since changed doctors). During all of that time I cared for him, took care of the housework, did all of the yard work, and worked full time. Knowing he was sick, I bit my tongue and kept my mouth shut every time he got into one of his emotional outbreaks. He frequently talked of wanting to die, that I didn't deserve to be saddled down with a sick old man, that I should just leave him and find someone else.

Having said all of that, you would think that he would have a better understanding of how I am feeling going through all of this with MG. I feel so alone because I can't talk to him about it. He either comes down on me about feeling sorry for myself or he turns it around and makes me feel guilty for feeling the way that I do by going on and on about how terrible a husband he is because he isn't taking care of me the way that he should be.

He tells me he wants me to get up and do things for myself when I feel like it - that I need to get some exercise and stretch my legs. The doctor even told me to get up and do things if I felt like it. Then when I do, he gets mad at me and accuses me of of never letting him do anything for me. One day I actually spoke up about it and he got so angry at me that he went into the bedroom, slammed the door, and wouldn't talk to me all day. All of this because I had asked him to make me a sandwich and when he brought it to me he started in about how I never ask him to do anything for me. That's when I spoke up and reminded him that I just got done asking him for to make me a sandwich.

I have so many fears and concerns about this illness and what the future has to hold for me. This support group is one of the best things that has happened to me since my diagnosis. The people here truly care and have been through what I am going through so they understand.

Any time you need to know something or just need to vent about what is going on with you just come here. We are all here for you. We understand and will not judge you for your fears or thoughts. "
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Reply #2 - 02/01/11  6:32pm
" I am so sorry that you are feeling so rotten, no other word for it. I wish I could give you a big hug. I think you need to be a sweaky wheel and call you doc's office back and tell them everything but MOST ESPECIALLY about your breathing difficulties. If they can't get you in then you may need to think about getting a new neuro when things get settled down.
You didn't mention how long you have been this way, but if it's been very long, you sure don't have the MG undercontrol. Call your doc and tell them you are worse, having breathing problems and cannot wait until med Feb, worth a try. Good luck....oh and see if you have a local support group nearby to join....support and friends all rolled into one. "
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Reply #3 - 02/01/11  6:50pm
" If you feel your life is ever in jeopardy, you go to the ER and tell them you have MG and to give you IVIG therapy if possible. You can wait for your neuro appointment and when you get it, REALLY lay into the Neuro with info about you, and what course you want to take to treat this disease, including IVIG, because you do need treatment to feel better. I say the IVIG because that is the quickest way to getting some relief. Very few it doesn't give some relief to, and I have posted that with other treatment can be a way to feeling much better and/or remission, with time. We all want you to feel better, and we all know how crappy you feel all the time. Seems to me, I still feel like crap after I have started treatment, just not quite as crappy...Little relief is better than no relief, and we must have hope to improve our minds along with our bodies.

We are here for you!

Best wishes for peace,

TJ "
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Reply #4 - 02/02/11  5:58pm
" I want to give everyone here a (((hug))). I've been diagnosed with this for 8 years, and lately it's been getting to me how much I can and can't do.
My children are off to college, my poor husband works 16hr days, so that leaves me alone all day, and most of the evening. Even thougth my children call just about every day, and my husband calls during his lunch hour....lately the stress has been over whelming.
I think many people with chronic illnesses feel the way we do...but what to do about it....sometimes I just take it day by day, and on bad days hour by hour....
When it comes to actual symptoms flaring up to the point it affects my breathing...then there really is no choice..go to the er, get checked out, call the neuro, and tell them what's going on...
(((hugs))) "
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Reply #5 - 02/02/11  7:44pm
" I agree with what others have said. I was diagnosed a year ago and was very unhappy with my neuro. I finally switched to a Dr. who is on the board of the local MGIF. She is wonderful, I only wish I had done it sooner. This is a disease we will be living with for a long time. It's so important to have a dr. that partners with you in your treatment

Good Luck! "

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