caret icon Back to all discussions

Deep frustration and sadness after finding the love of my life

Hi all, my name is Lucienne, i,m a 57 year old woman from The Netherlands. I,m so depressed and sad that i decided to search for a forum where i can write my feelings down. I had my thymectomie In 1985 so i have a long historie with MG. The operation was so succesfull that i decided to stop the Mestinon.I didn,t wanted to be a patient, i regret my desicion afterwards, but we all know the sideeffects of this drug and so i stopped. . That whole period of severe MG and the inability to speak eat or drink properly was a traumatising period and i developed severe PTSD from it. My whole personality changed. I developed an anxiety and depressive disorder, before that i was always healthy, strong,stable, social and outgoing. I had two long relationships and a relation/ marriadge of 23 years. After having to cope ( my choice he was overall very nice ) with a partner with BPD my energy and mental health became worse. After losing my dad in 2009 i had to become a caregiver for my mother who developed dementia. This was draining and heartbreaking.. My dog, my best friend died also at the same time. I became severely burned out from it and when i was so sick that i literally fell on the floor from mental exhaustion but despite that i kept going on as the loyal person i am. I did not wanted to leave her alone in those last years in a nursing home. My partner left me after 23 years because i was fysically and mentally a mess. After my mother passen away i was in much grief, and i ended up all alone. My burnout recovery started, it caused braindamage , i went much too far. I,m in my sixth year of recovery and i,m desperate. Last year i met the love of my life. Never expected that to happen on my age. My symptoms are mild, nobody sees or notices anything but i can feel it. Beeing crazy in love was so exciting . I told him what i have but nobody can understand MG, they think it,s a MS like disease. Strong emotions and stress can trigger symptoms. I was overweight and started excercizing like crazy to loose weight, that was a bad desicion , my burnout came back. And with that i developed muscleweakness in my moutharea. 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. I feel ashamed that i have MG , i feel not good enough, i don,t want to burden another man with my issues. 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. 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. I visited a neurologist , i considered taking medication again but he said i,m too good and nothing will help me, the sideeffects of the drugs would be worse then the benefits if i would have them at all. So this is my story, i apologise for my english and i want to thank anyone who is willing to read my story from the bottom of my heart, God bless you all ,

  1. You are a trooper. You've been battling MG for quite a while now. After you had your thymectomy did your doctors put you on reduced medication? I too stopped taking mestinon when I had my surgery and I agree it was the worst decision I made. I quickly got back on. If the doctors told you not to take mestinon anymore...did they give you a different medication to take? My heart goes out to you. I can only imagine the emotional pain that comes with losing a parent. Then becoming a caregiver for your mother. No easy task. My grandmother has dementia as well and my mother takes care of her and I see the wear and tear on her. It must be worst for you with having MG on top of that. I hope you are able to let this new guy into your life. Sending hugs your way. - Jazmin, MG Team Member

    1. Yes the procedure now is less invasive. I had the robotics procedure. They normally do 3 small incisions, but they made 4 on me because the gland was bigger than expected. I got diagnosed when I was 17 and I'm 28 now. Yes I can relate to a medicine being traumatizing. I was on cellcept for a few years which also caused me to have 3 miscarriages. When I found out I was pregnant with my son I stopped taking that specific medication cold turkey because my neurologist told me that's why I was having miscarriages. (I do not recommend stopping any medication without your doctors consent) I'm sorry that you have to deal with these strong emotional triggers on your own. I'm also sorry for your loss, it sounds like your parents were your biggest supporters. I hope you find peace and comfort in reaching out to others online and maybe any support groups in your town. I'm here for you as well if you need someone to talk too. Feel free to reach out to me. - Jazmin, MG Team Member

    2. 🩷🩷🩷

  2. Thanks so much Kaithlyn for your kind words, greetings from The Netherlands

    1. Oh Lucienne, my whole heart goes out to you. Thank you so much for taking the time to share your story with us. I am so glad you have found our MG community. I think so many here can relate to the feelings you shared. Most people with MG are very hesitant to date! As you mentioned, MG is very hard for others to understand. I am so sorry your nerves while you are around him cause you to experience symptoms - that must be so incredibly frustrating. I hope others will jump in to share their own advice and wishes for you as you try to navigate this journey. Sending many hugs and positive thoughts your way! Warmly, Kaitlyn (Team Member)

      Please read our rules before posting.