Living on an Island

Having MS, I often feel like I’m living on an island. When things are going alright, there’s a bridge from the island to the mainland. When things get bad, the bridge is swallowed up by the tide and I’m alone. Dealing with chronic pain is isolating, especially when the pain becomes constant. Unless someone has gone through something similar, there really isn’t anyway others can understand what it’s like. It’s not the pain so much that people cannot relate to, it’s the long road stretching ahead of you where this is life, this is something that will have to be dealt with forever. Somedays will be fine, hopefully the MS will settle down for a while, but ultimately the pain comes back, the achy feeling, the dizziness, the fatigue... it all comes back.

I’m coming up on my one year anniversary of being diagnosed with MS and honestly, I don’t know how I managed through one year, and I’m facing all of the other years yet to come. I know I will, manage, but in the grand scheme of things I’m still at the beginning. I’ve had a pretty rough time of it so far, and I still don’t know what’s yet to come, I don’t know if things will get easier or if there’s harder stuff I’ve yet to endure.

To be brutally truthful, I’m still very angry about what’s happened. I feel robbed, cheated out of a so called normal life. A part of me resents everyone else who doesn’t have this, who doesn’t have to deal with the drugs and the shots and the pain and so on. Because I know that most of the people around me take their good health for granted, it’s normal, it’s expected, our bodies are supposed to work. We only realize when our bodies don’t how good we had it before; I know I did. It’s hard accepting well wishes and sympathy because I can’t help but think that in the back of everyone’s mind, they’re saying “Thank God it’s not me.” And that’s what is so isolating, people cannot imagine a life debilitated by chronic illness, and they really don’t want to.

My therapist asked me today, what would I rather people say to me instead of expressing sympathy, and I honestly didn’t know. I suppose nothing, a silent acknowledgment that it sucks to be me, but there’s really nothing that can be done, so what is there left to say. I suppose what I need is for other people to accept that there is nothing that can be done, and not feel as though there is something they should do. This is life, it’s my life, my burden to bear, and it’s something that I have to bear on my own. I alone have to figure out what this means for me and how I’m going to live with it. Expressions of anger, sadness, pain are not meant to garner sympathy but are the only way I can let out what I’m dealing with. It’s something that for me, I have to express in some way so I can analyze it, mold it around, try to glean some sort of understanding.

Sometimes I feel as though I have a handle on things, I’ve compartmentalized MS as just another part of my over all make-up. Then it rears it’s ugly head and I am reminded that it’s not as easy as one might think to package it up and fit it in somewhere. I’m still not over the shock, I still haven’t entirely accepted that it’s real. I just want to push it aside and forget about it, but it won’t allow it’s self to be forgotten.