New and Blue
Posted: Sat Apr 13, 2013 7:29 pm
Hi folks. I've been fighting with myself in coming here. I think a part of me thinks this is all a bad dream and I'm going to wake up good as new and if I fail to give this any steam, it will just go away. (Can't blame a gal for tryin'!)
So the about me bit:
I'm a 33 married mother of eight year old twins. I was diagnosed with MS in Sept of 2012 after having an MRI to find the cause of the trigeminal neuralgia (TGN) I was suffering.
For anyone not familiar with TGN, it is most intense pain I've ever felt in my life and I had two kids! It's like someone is trying to remove your eye with a dull spoon, give you a root canal with no freezing, cattle prodding you in the jaw, and hammering a spike through your ear all at the same time.
I've had a whole host of other fun symptoms like issues with memory, extreme fatigue, muscle spasms, tingling and numbness in various parts of my body, and depression leading to an attempt to take my own life.
I am currently in a double blind drug trial with Ocrelizumab and Rebif so I'm on one or the other but of course, I'm not sure which. I am on a leave from work as well but maintain my numerous volunteer activities where I can. As I am sure most of you do, I struggle with the daily symptoms and the more significant relapses.
You see, I've always been a strong, competent and capable person who never let anyone down. Now for once in my life, my tough nut shell has cracked and I feel weak and broken. I cry - a lot! I still haven't given up a lot of my extra activities though because I don't want to give into this disease but there are some days where I just don't have the gas to make things go.
My biggest struggle is dealing with some of my family and friends. My husband and children have been very supportive and understanding but I am suffering an extreme level of guilt and shame for what I've put on them. Some people tell me it's mind over matter and I can get through this by donning a more positive attitude. Some days I see merely getting out of bed a victory. Some see me as lacking fight. Some think I just make excuses. Am I or is having MS really as challenging as I am finding it? Am I handling things wrong? If not, what do you say to these people?
Thanks for taking the time to read my plight.
So the about me bit:
I'm a 33 married mother of eight year old twins. I was diagnosed with MS in Sept of 2012 after having an MRI to find the cause of the trigeminal neuralgia (TGN) I was suffering.
For anyone not familiar with TGN, it is most intense pain I've ever felt in my life and I had two kids! It's like someone is trying to remove your eye with a dull spoon, give you a root canal with no freezing, cattle prodding you in the jaw, and hammering a spike through your ear all at the same time.
I've had a whole host of other fun symptoms like issues with memory, extreme fatigue, muscle spasms, tingling and numbness in various parts of my body, and depression leading to an attempt to take my own life.
I am currently in a double blind drug trial with Ocrelizumab and Rebif so I'm on one or the other but of course, I'm not sure which. I am on a leave from work as well but maintain my numerous volunteer activities where I can. As I am sure most of you do, I struggle with the daily symptoms and the more significant relapses.
You see, I've always been a strong, competent and capable person who never let anyone down. Now for once in my life, my tough nut shell has cracked and I feel weak and broken. I cry - a lot! I still haven't given up a lot of my extra activities though because I don't want to give into this disease but there are some days where I just don't have the gas to make things go.
My biggest struggle is dealing with some of my family and friends. My husband and children have been very supportive and understanding but I am suffering an extreme level of guilt and shame for what I've put on them. Some people tell me it's mind over matter and I can get through this by donning a more positive attitude. Some days I see merely getting out of bed a victory. Some see me as lacking fight. Some think I just make excuses. Am I or is having MS really as challenging as I am finding it? Am I handling things wrong? If not, what do you say to these people?
Thanks for taking the time to read my plight.