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
I've had MG for 18 years, yes it was very hard to learn what you can do and what you can't anymore. And you only being 19 is going to be a challenge. My advice is learn what part of the day you can do more, like mine is the mornings, rest after and take your meds, and talk to your friends about what activities you can participate in and what will put you down later. They will understand. My biggest advice is be your own advocate.
It's very hard at first tô accept how things are Fleur, but gradually you will know what works for you. I'm 62 and was diagnosed 2 yrs ago approx. Listen tô your body and take it 1 day at a time. I find if i can stay as stressfree as possible i have less flares. I don't feel só alone when people share their experiences, and things that help them. It's good tô belong tô a group with same issues. Much love 🤗
Yes, Myasthenia Gravis effects each of us differently and how we handle it requires understanding family and friends. We must remember we are not the person we were and our family and friends must work at not expecting the same old person to be in that familiar face. If you believe you can do it like you always did you will pay later that day or the next. Like many of us, I did it all and many said if you need something done give it to Katherine, well those days are gone. However, the strategies we practiced to be do it all people are good to use as MG people. Remember brake up the tasks and mix tasks, a change is as good as a rest. The tasks will still get done it just takes a bit longer. A one afternoon, in the past, task is now done in 4 or 5 afternoons. Also bost others esteem by delighting and letting them know you believe in their abilities.
Fleur welcome to the community. I had symptoms my entire life but because I’m older it took decades for doctors to figure it out. So of course I was relieved to get a diagnosis and proper meds, but sad to have a rare disease which seemed more lonely.
It can feel exhausting having to explain it to everyone. You’ll figure out your energy flow, which is crucial to avoid flares. It’s important to have an in person support network for practical matters, and rely on your online families for emotional support. I say families plural, as there are many online groups around the country so you can meet lots of others and get tips.
