Deep frustration and sadness after finding the love of my life

Reading your story, I see so many ways in which I identify with you. For one thing, we both share some Dutch heritage, me through one of my grandmothers…and second, we both found a soul mate later in life, while dealing with chronic disease. In some ways I feel very much able to understand and grasp what you are going through, but in all humility I have to stress that my own MG is only ocular, and is very mild, so I may easily underestimate how daunting your own situation is right now. But I DO understand being torn between love and fear, and hope I can give you some encouragement.

I’m sorry you had such disturbing side effects from Mestinon. Thus far I have been very lucky in that respect. But I understand why you stopped taking it when you did, and how you ended up with PTSD. I had a similar situation many years ago when a doctor overdosed me with Synthroid…a heavy and prolonged overdose that left me with anxiety disorder and panic attacks. You say that your whole personality changed, and I believe you! I feel as if my brain was rewired from all the fight or flight hormones I was flooded with from too much Synthroid. So while the circumstances are not the same, I totally get how a person’s personality can change due to medical trauma. And I also see how scary it is to be in a situation where you need to take something in order to function, but have experienced how badly taking it can affect you. Reading about your own trauma and how hard life became for you is like a flashback for me,
So please know that I take your situation very seriously, even if, as you say, your MG is not a severe case. It’s hard to go from being an outgoing cheerful person, to being anxious and depressed, even if you know that you have good reason to feel bad.

And as if that wasn’t enough to deal with, you lost three loved ones—no, four, because your relationship ended as well. You had loss after loss piling on top of each other. And losing your dog was the icing on the cake, there is a special bond we have with animals that can be such a comfort. A constant companion like a beloved dog or cat can leave a gaping hole in your heart when they leave you. It sounds as if you didn’t have ANYONE to lean on when you needed it the most. But ever then, you took care of your mother in her last days. That is so admirable!

“ Last year i met the love of my life. Never expected that to happen on my age.”

I can relate to this too, I fell in love when I was 51. I met him online, and we could not be together for a decade due to distance and family ties, but eventually he did move in with me, and I can’t imagine living without him. And I know about love and fear and how they can compete with one another, because we both wrestled with how something can be so right—we truly believe we were meant to be together in our old age—but still be wrong, because we were married to other people then.

“My symptoms are mild, nobody sees or notices anything but i can feel it.”

Yes, I understand about that. My MG is not the hardest thing I have to deal with, I have fibromyalgia and a very severe sleep disorder—basically I have no cycadian rhythm left at this point, so sleep tends to be random. Not good if you have fibro and MG. And the symptoms don’t show.

“Beeing crazy in love was so exciting “

And also terrifying. But it is the best thing in the world.

“The reason I’m want to write this all down is that I’m starting to realise that i can’t go on in love, what once was normal isn’t anymore. “

Please know that I am not meaning to diminish anything you feel, or make light of what you’re up against. It comes through so strongly in what you write! Your story vividly shows how very hard this is, how much you have thought about it, and why you have reached a point of despair…such despair that you are almost ready to turn your back on something so precious as a love found late in life. You have to be in great pain to be contemplating that. But allow me, if it’s okay, to share my thoughts about your situation from the perspective of someone who has gone on in love when for totally different reasons, I hesitated at one point—in fact, agonized over it. Let me take it one point at a time.

“I feel ashamed that i have MG , i feel not good enough, I don’t want to burden another man with my issues.”

Of course you know being sick isn’t something you enjoy or wanted to do. It isn’t anything to feel ashamed of, but I understand why you do. You want to give as good as you get, not always be the one who needs help or understanding. But I know from experience that gratitude and appreciation are worth as much as kindnesses received, and it isn’t a burden if the person carrying the weight wants to be there. And if sometimes it does feel like too much to him? Well, you did it when your mother needed you. And so will he. Perhaps it should be his choice, to forge ahead and find out whether or not he can be there for you. Why not give him the chance, and see?

I also would urge you to consider that life is a learning experience, and sometimes people who have spent years taking care of others have trouble learning how to be taken care of. It feels wrong to them. But sometimes, being taken care of is just what they need, not just physically, but spiritually. You have had it be so strong, you know? Maybe you are supposed to have the experience of being taken care of. Maybe you need to give yourself permission to be weak for a change. My own mother was like that, she always took care of everyone else, until in her nineties, she had to rely on others to take care of her. It is nothing to be ashamed of. I think.like my mother, that you have earned it. And if the universe has sent someone to you who wants to do it? Embrace it with joy! Or if that’s going a little too far, at least try taking a chance. 😊

“All the things happened in the past, all the stress, the caregiving, the burnouts and loosing everything and everyone i had and loved and depended on has made me who i am today.”

That is true. And the choices you make now will make you who you are when you’re my age. At 75 plus, I am benefitting from the choice I made when I was in my early fifties…to embrace love and do the best I could with it, even if the situation was daunting. I have a partner who loves me, takes care of me, and appreciates anything I can give in return. And a big part of what I give is my love and my gratitude.

“I’m sad, depressed and angry that i can’t follow my heart and embrace love, I’m crazy about him. But as soon we interact i get nervous and scared and then i experience more symptoms.”

This is hard, and I understand why it’s so scary. That’s why I said to weigh my advice carefully before accepting it. I understand how stress makes the symptoms worse. Is it possible that it’s your emotions driving it, and that if you could resolve your warring emptions (love versus fear) that you could tolerate the interaction without going into a flare?

“I visited a neurologist , i considered taking medication
again but he said I’m too good and nothing will help me, the side effects of the drugs would be worse then the benefits if i would have them at all.”

I think before accepting that as gospel, I would consult with another neurologist. I would explain that yes, I am good in a vacuum, but when I try to interact with this man that I adore, I get so nervous that THEN I get worse symptoms. Maybe you would find a different doctor to be more willing to experiment with you and find something that works. You need to talk to someone who will listen, understand the whole situation, and take your emotions into account. I also would suggest talking to your beloved, and trying to come u with a plan to interact in a less intense or frequent way so you can get accustomed to it without overloading your emotions and getting stressed. Like how they do with phobias. You react as if you have a phobia when interacting with him, for fear of a flare. So maybe getting used to it a little at a time would help you overcome that. It's like how you have to ease into exercise, so you won’t overdo it and make yourself sick. You learned that lesson once, perhaps you could draw from that experience and sort of ease into the relationship gently….like you would with a new exercise program.

Above all, I would not abandon a relationship with a man who is willing to love you back, when you are so deeply in love with him. Think of it this way---at a time in life when you have been overloaded with illness and loss and sorrow and desperately need a friend, God—fate—the universe, what you will….has sent you a lifeline. A lifeline when sorely needed is not something ot be lightly ignored. When I was sent my own lifeline back in 1999, I grabbed it and held on through thick and thin and never let go. And believe me, I did agonize over it. I hope very much that you will find a way to hold onto yours.

I am so sorry you felt this grief, you need to see each stage is different and that area that has you trapped may change. I wouldn’t give up that love of your life- relax and allow a blending between you to grow. Watch those ‘I can’t’ change to’ I did it’.
I suffer from MG and some stages wipe me out. I just adapt to one and poof it has changed. Recently it’s my voice- dr says don’t sing and limit speech… oh goody another restriction. I’m told God has a purpose for my life, I don’t see it but I trust him! I feel exhausted most of the time, I have about 3 hrs before my body stops and I have to rest.
My name is Pat. I will watch for you and write back. Hang on and us low moderation in everything. Eat small amt of food so muscles aren’t overwhelmed, walk short distances, easy activity and reach out to the most high God who has his arms open to you.

Lulu, My self is 72, was diagnosied gMG years back, currently MG is well in control with medication. This is life changing dieases and needs highly balance life style. thre are few main points, regular medications, light excercise OR activities, healthy food habits, and main control mind with meditations , light yoga etc, be cheerfull , strong, life gives us challange to make us strong, Be happy find meaning to life and keep occupie your self as much as you can

Hi Lulu. Among the things that MG can steal from you is your confidence. Don't let it. The person you were before MG arrived is the person you are today. MG can make your world smaller, but it can make it richer, too. I found the love of my life when I was 70, and I have never been happier. So it is never too late. Don't let yourself be defined by your disease. Take charge of your life, understanding that, yes, you and your friends will have to make some accommodations. But on the whole, they are minor things, compared to the joys of friendship, love, and sunny spring days.