MS sucks. I hate it.

When I first found out I had MS, while being hos­pi­tal­ized for a week then spend­ing three weeks in a wheel­chair in rehab, I fig­ured the first relapse would be harder than the ini­tial expe­ri­ence; because at first it was at least novel and inter­est­ing. I was right. It was won­der­ful that I grad­u­ated to a walker at the end of rehab, and could walk with­out one a week after get­ting home. Then the pain came. I was think­ing at first that the dis­com­fort I was learn­ing to call “pain” was how it was going to be. I was wrong. But pain can be managed.

I started to cry just before I decided to go to the emer­gency room in Novem­ber of 2010, because I couldn’t stand with a cane. Then I stopped cry­ing, told my friend we needed to go to the emer­gency room, then asked him to help me put my shoes on. I had tried very hard to avoid the expense of the emer­gency room and the ambu­lance ride to Port­land. I had an appoint­ment sched­uled for Tues­day, but by Sat­ur­day my hand was forced. I did not cry after that. I took it like a good troop. Chin up and all that bull­shit. After the MRIs, the man who would become my neu­rol­o­gist with the V.A. said, “There’s a chance you’ll walk again.” I said, “Whoa.” But I did not cry. After the diag­no­sis of “prob­a­bly MS” I did not cry. I learned, and learned that it is such a flaky and erratic dis­or­der that no one could pre­dict its course. I learned that there is no defin­i­tive test for it. If I remit­ted, then we could bet it was MS, and the relapsing/​remitting type which is the best you can hope for when you’ve prob­a­bly got MS.

So the first remis­sion was pro­found in many ways. Though the pain didn’t go away, the gait was nor­mal and more impor­tantly, the brain fog and fatigue were com­pletely gone.

The gait can be aug­mented. I don’t know what can be done about the brain fog and fatigue— it’s the worst part. I cried for half an hour yes­ter­day. I am try­ing my very best not to feel bit­ter about this right now. The dis­ease is noth­ing per­sonal. There is noth­ing I could have done to cause it or to pre­vent it. The tim­ing of my relapse is noth­ing per­sonal. I’ve been tak­ing my Copax­one faith­fully. But I feel robbed. I can­not not feel that right now. “Why me?” is too stu­pid a ques­tion to ask— it’s not as if some­one else is more deserv­ing. It is not a pun­ish­ment, but it’s a thief and I am a ran­dom vic­tim of a crap shoot in which I threw seven ran­dom reces­sive genes with­out know­ing it. “Why now?” What a use­less ques­tion. “Why not?” I’m just not feel­ing cheeky enough to ask that question.

I hate it. I hate it. I hate it. I hate it. I hate it.

I have no idea when I’ll have another remis­sion. No one does. If the Copax­one is work­ing then per­haps I’ll have more than one remis­sion a year. Being opti­mistic is set­ting myself up for dis­ap­point­ment; and being bit­ter, angry, hate­ful, brain-​foggy, fatigued, and dis­ap­pointed at the same time sounds over­whelm­ing. On the bright side, I prob­a­bly don’t have the energy to feel all of those at once while I’m tak­ing care of nec­es­sary work and the basics for myself.

I hate what it’s doing to me. I hate feel­ing help­less against any­thing. It doesn’t rival my PTSD, but it makes me feel even less capa­ble of deal­ing with the one thing that has knocked me down in my life and has done so repeat­edly. I don’t want to have faith, I don’t want to be rea­soned with, I don’t want con­so­la­tion, I don’t want sym­pa­thy, I don’t want con­do­lences, I don’t want com­pen­sa­tion, I don’t want con­so­la­tion, I don’t want encour­age­ment, I don’t want sage advice, I JUST WANT IT TO GO AWAY AND LEAVE ME ALONE! I HATE IT.