Hi, this is my first post after only being diagnosed a week ago. It’s a bit of a rant and a bit of a request/ cry for help.
I’ve been telling friends and family the news of my diagnosis. Most were aware of the tests I was having and my consultants suspicions, which were 100% correct. So why am I spending so much time making sure everyone else is ok with what’s happening to me?
I was really glad to be able to put a name to what has been happening to me and now I’m keen to get my symptoms under control. Hard to do when others want reassurance about how it will effect them. How do I deal with that? I feel like I have to play down how I’m feeling and sugar coat it. Not easy when the feteuge is so bad. I.e. it’s 3.43am and I’m still up. Tomorrow I’ll crash at some point and awaken feeling awful and unable to function. Just as well I’m off work this week anyway. I just want to finish up some stuff to reduce the pressure on my time. But I’m spending so much time on the phone and visiting people. I really don’t have time to make them feel better right now. I’m still trying to get my head around it.
I just don’t think there is anyone I can talk to about it. No one gets what the feteuge is really like. They don’t understand how one week a leg is weak and tender and the next week it’s an arm. Even though they know what it is now, people either think I’ll be in a wheelchair next week, don’t get that I can’t domit all anymore or that we can pray it away. I’m glad their faith helps them, but I’ve never been religious.
In a way it feels like it’s my fault. Before I knew I had MS, I tried to just get on whith things so I didn’t ask for help at home. Now, my family seem to be piling on the pressure.
What do I do? I’m feeling so overwhelmed and emotional. It’s only been a week. I’ve yet to get the date to even meet my MS nurse. But I’m curently helping with three weddings, starting a business, building a website and working full time. There are so many balls in the air. I just want to run away so I can work out where I go from here.
And now it’s 4.13am and I’m still wide awake.