Being new in the community.
Hi, my name is Fleur I'm nineteen and I got officially diagnosed around a week ago.
I've been really struggling currently and feeling a little lost. I've started mestinon 3 times a day to build it up, it helps but when I do something on days I feel good I'm destroyed the next day and it honestly makes me sad.
I'm having a hard time accepting myself and to tell myself it's okay to not be okay, I just want to do everything I were able to do before but I just know it's not realistic.
It's just very overwhelming.
My question being, how did you guys feel when you first got diagnosed? How did you feel about everything?
- Fleur
Welcome to a club nobody wants to be a member of and didn't choose to join. Comedian Groucho Marx once said "I'll never join a club that would have me as a member" and yet here we are, LOL.
I was very active when I got sick (hence my user ID) and although there are things I know that I'll likely never be able to do again, I'm blessed to have the time and opportunity to learn brand new things and have experiences I may not have had if my path had not been changed in some way. Your life is changing and yes, it can be very overwhelming. Finding a counselor who specializes in chronic illness can help with that part but finding that you're far more capable than what you're able to do physically is invaluable to your well being.
The most important thing is to educate yourself as much as possible and this is an excellent forum to help with that. You need to be your own best advocate not only for proper medical care but also to help those around you understand your illness (they've likely never heard of it) and what your current limitations and abilities are. This is the hand you've been dealt, so play it for all it's worth.
- MikeI just wanted to say hi because I'm around your age ( i'm 3 years older). I started having MG symptoms when I was 19 as well.
I actually felt very relieved when I was diagnosed because it took a couple of years for me to find a diagnosis. Doctors kept telling me there was nothing wrong with me because all my neuro bloodwork and tests were normal at first, but I could barely walk or go to school. I felt very discouraged because it seemed as if nobody, but my family believed me. Only later, did MuSK antibodies appear in my blood test 2 years after I started having symptoms.
I also struggle with not being able to do the things I could do before. However, over the years, I learned to find new hobbies and activities I could do with family and friends. Another thing you could do is modify the things that you do like to do. For example, you could use a wheelchair instead of walking to save energy and still go to the places you enjoy.
Before, I would love taking my dog on a walk to the park, but I can't do that anymore. So now, I have picnics in the park with my best friend where I can sit down under a tree in the shade.
- Brianna
