I’ll have to share the night I was diagnosed with MS with you all one day. It went from being a terrifying moment to being totally zen about the whole thing. I know, someone hands you a life changing diagnosis and the only thing I can think about is not making it to the first game of MLS season. My priorities are never in the right place.
I write this now because I have a small confession to make. You see, I’ve put on this front of being really cool with my new life. My MS is a constant reminder that I’m in fact a living breathing human being. It also reminds me that I have to make huge changes and allowances for how I live (no stress, no heat, and really no nothing).
I used to love to do yoga before but lately the only thing I can do is lay on my yoga mat and breathe. I watch the world from my window and wait for the temperature to drop (usually late afternoon/early evening) so that I can check the mail. Now, it’s not always so grim and maybe I just am still adjusting to my new life. Then again, this might be just the way I live now…
Unfortunately there is one small scary thing that troubles me…and that is that I’m scared to sleep. It’s usually worse after I self inject my MS medication because I fear that I will have a reaction. Look, I’m sure that being zen about life means that I have to be totally cool with death. Truth is, I’m not…especially when I have tons still left to do. I guess what I’m saying is that the reality is finally settling in. I’m in this for the long haul. That whole “I have MS, but it doesn’t have me,” slogan makes me want to punch the person that created it. I’m sure they are super nice but come on – let’s just admit that we really hate it and someone needs to find a cure now.
I don’t want to bike for MS, walk for MS, or even sit around holding hands and have some dude tell me “but you look fantastic.” Well, I don’t feel that way when I’m up at 3am wearing an ice vest and eating a Dreyer’s strawberry juice bar because I feel like I’m having a hot flash and I’m only 32. And I’m really tired that my hair is falling out thanks to the medication that is supposed to be slowing the progression of my lesions.
I don’t know how this turned into a rant filled post and I get that I should have a wall constructed to hide what is really going on. Maybe, I need to do a walk or run or bike and connect with people that are going through this – unfortunately all of those things happen outdoors – the last place I can be during the day. So there you go…MS:1, Me:0
I’m not even a year in and I really want to know that I can look back on the last few months many years from now and just laugh. I want to look back and think “man, that was nothing!” When I was first diagnosed – I allowed myself to freak out and cry for fifteen minutes. And I think now I’ve reached that moment where I’m angry that my body (which I took care of) betrayed me this way.
Today, I woke up fully aware that I’m having a relapse and have to get back on the steroids for my optic neuritis. It’s painful. I’m not going to lie and say I feel great when all I want to do is curl in a ball and cry from frustration. Again, I’m still waiting for the day that I can be far from this moment and feel like myself again.
daniellellanes 