It has only been six months since I have been diagnosed but it feels like forever. Life has been a frickin whirlwind for me and I live my life via a pocket day planner. I am constantly reading and researching everything I can regarding MS. Especially the medication that I have been prescribed (Aubagio).
I was on it before but I had to stop it because it reacted badly to the IV infusions. So now I have been on again for a month straight with no bad reaction. I didn’t have the hair loss, thank goodness. But I am not seeing any other wonderful things about it.
I wasn’t really hoping for miracles but I was kind of hoping for a little bit of difference in how I felt. But I still have the MS hug. I still have the difficulty walking. I still feel like I am in a flare all of the time. Out of seven days I have one decent day. The only thing is I don’t have to wear a diaper due to diarrhea blowouts and urinary accidents. That is a blessing.
I am blessed to have my husband by my side. He knows when I am having a hard time. He knows when I can’t get a breath. He knows when it is just a struggle for me to walk through the house. I can’t find the words to tell him because I can’t find the air. So I just lean my head on his shoulders and silently sob. I don’t have to say a thing, he just knows.
That happens a lot. My voice is taken away from me a lot. But he knows. He can read me. My eyes will tell you all you need to know. Sometimes my voice is slurred or it makes no sense at all. But he makes sense of it. We laugh at it but there is a lot of tears too, I won’t lie. I sob due to frustration, due to loss, due to pissed offness, due to achiness, hurt, loneliness and tiredness.
I am still here.!!!
I am still me!!!
I may be struggling but I am still here. I am learning how to live with this. Please don’t toss me aside. Don’t act like it doesn’t matter. Learn about it and ask me about it. But don’t ignore it. I wouldn’t do that to you. There’s no cure but I am not going to die from it.