So I realized that there are quite a few people who follow my blog and whom I follow that have MG or some sort of autoimmune or muscular disorder. I wanted to take this chance before my surgery next month to give you all a chance to ask me anything about my symptoms, feelings, thoughts, or experiences with Myasthenia Gravis. It can be about the past, present or the future and I will answer it. I will keep your name anonymous if you wish it and you can send me an email or simply reply to blog with a question. I feel that sometimes this is the best way to help one another out in the community as well as just relate to one another.
SO there are always surveys and research studies that are conducted for all kinds of things from your favorite color to how well you cope with the your chronic illness. This can be done on an individual level to how well people do on a whole or in a group. This can also be compared across a group from a bunch of individuals. Several research studies have been conducted on individuals with Myasthenia Gravis and their quality of life according to the Myasthenia Gravis- Pipeline Insights and well as the my author listed below. Their findings are similar. Stating that Younger more symptomatic women are at a higher risk for a lower quality of life. We are less likely to be happy, because we are in more pain (emotionally or physically, have more bills and concerns, and so on. That is a big 10-4.
It was gender specific stating that it was the women more so than the men, that had not had a thymectomy, who were not in remission, or only had ocular myasthenia (which means they have more than just eye related MG). I would say that would make anyone down so I am not sure why it only affects women more than men. Especially since more men have it and generally men over 60. I think maybe it as to do with the fact that when it hits women (generally around 30, we have our WHOLE lives ahead of us. It’s a really hard blow. We still have a lot of things to accomplish or do, you may not have children yet, or have gotten married, or found that professional level at your job and now you have to try to do it with a disability. Where as at 60 you are mid-stride or beginning to slow down in those areas.
I am a super cheery person but I did go through a dark patch for a while with these things as well. I still hit some moments of quiet meditation to pull myself up by the bootstraps and keep pushing forward. It’s a lot to deal with. However, I ave some of the best people and support around me and many GRAND distractions, LOL. I also love living the life I have. I have too many things to be thankful for and I know that there will too many good things to come to be unhappy for long. Something will always be around the corner to make me smile or laugh so I can never stay down too long. So even when I want to be down it never works. I just found these studies interesting because though they are not me, I can see how it could be anyone!!!
These studies are definitely me at times, I’m sure they are anyone with a chronic illness at times. I also believe that these studies are also needed because maybe they will find more outlets and programs for support groups and therapies for people with disorders and diseases. Many of us with these disorders, especially when we first are diagnosed feel confused, angry, and alone. We need to know that someone has this and that they felt this way and it is a normal feeling. We also need to know that researchers see this and hope they are going to do something about it!
From the website
Author: M. BoldinghL. DekkerA. ManiaolC. BrunborgA. LipkaE. NiksJ. VerschuurenC. Tallaksen
Credits/Source: Health and Quality of Life Outcomes 2015, 13:115
Myasthenia Gravis- Pipeline Insights