I am 15ish weeks pregnant with my second child. Pregnancy is remarkably hard on me, and I'm really not sure if it's just pregnancy in general or pregnancy + my MS. Regardless, things have been hard.
We are planning a homebirth with a midwife. There are many reasons for this, but most of it boils down to the fact that I do not trust doctors easily, and being in a doctor's office instantly puts me on the defensive and in "Fight" mode. I have a checkered history with the medical profession, and frankly I'd rather just avoid them unless it is necessary. And I don't feel that pregnancy is a "necessary" time. My great-grandmother gave birth to 12 children in her home, 2 sets of twins. She also was a midwife to other women. No one is ever going to convince me that my body is incapable of handling pregnancy on its own.
That was a tangent. Anyway. My midwife has never assisted a woman with MS. Because fo this she wanted to know more about my condition and how my disease affected me. Mostly, she cares about me as a person and just wanted to understand my personal situation. I have no problem talking about my MS to anyone.
But as part of this she asked me to write out how my MS impacts me, how it limits me, how I am different from a person without MS.
And I had to ask my husband for help. Because I don't think about it like that. I know I am different, I know I have limits; but the fact is that I cannot allow myself to get bogged down in that.
There are different ways of dealing with MS. One of the ways I have seen done is to keep basically an MS "diary" of every symptom and its severity throughout your day. The thought of this is so alien and uncomfortable to me that I have never done such a thing. On one hand, it does create some difficulty when I realize a symptom has gotten worse, and I don't know when that happened. On the other hand, it allows me to live my life on my terms without constantly thinking of myself as "disabled" or "different."
I deal with my MS the same way that I deal with any other problem in my life - I give it only as much attention as is required, and mostly I try to work around it and live my life regardless of it. Kind of like I hate the fact that we have a shared driveway, but I just ignore it and try to make sure that I am careful going in and out of it, then don't think about it when I'm not pulling in to or out of the driveway. Does that make sense?
I don't think about my ability to walk unless we are discussing doing something that will require a lot of walking. Then I consider the terrain, what I'd need to carry, how long we will be out, whether I will be able to take breaks... If my son and I are just spending the day hanging out at home, I don't think about my ability to walk. It doesn't apply, so it isn't on my mind.
My defense against my disease is to live my life in spite of it. I try to do what I want to do, I try to be the person I want to be, I try to just focus on the here and now. I don't think about the "before." Because it doesn't matter. What I used to be able to do is irrelevant to my life NOW. And I care about my life NOW.
Looking at the list my husband helped me make for my midwife is depressing. I want to tear it up and scream "That's Not Me!" but it is me. It's me, on paper; leaving my heart, my determination, my drive, my will out of it.
That's my problem with doctors. They only see the symptoms. They never think about the person behind them.
I am not my disease. And the only reason I am willing to show the list to my midwife is that I trust she will not see it as ME. She knows how driven and strong and capable I am. That is why she is assisting me in attempting an HBAC (homebirth after Cesarean.) She knows how hard I fought to have my first child at home. She herself said "You never gave up and you did everything right during labor. If sheer force of will would have gotten him out, you'd have done it." Because I do not give up. I do not stop. I do not back down.
I am not that list of symptoms. I am far more than that. It depresses me to look at the list, but not because of how it impacts my life. No, it depresses me because I realize that that list is how most people would see me. If I showed that list to people, how many would look past it to see who I really am? And how many would just focus on my various disabilities and decide it was too much effort to do anything with me?
That's the beauty of my life, though. Everyone in my life, all the people I love and the friends I have made; they don't see that list. And I know that. I know that they see me first as the person I am. And then it is understood that accommodations may have to be made.
That is how I live my life. I think of the end goal first. And then I figure out what I need to do to make sure I get there. Sure, I have to think of what I need to do to make it possible. But I never start with the premise that it isn't possible.