As it turns out, acceptance is a hard thing to wrangle.
For quite some time now I thought I had this all sorted, I had it mastered. I was the one assuring my family and friends that it was okay if my pain wouldn’t cease. When doctors promised me a pain free result I knew better, and I recognized anyone promising me 100% relief as the scammer they were. I had accepted that this was going to be my life, and I was going to be happy regardless.
Until one by one my care team started echoing the things I knew to be true; this isn’t going away. All surgical and non-surgical fixes have been exhausted and there is nothing left to do but live the best life possible.
I have all of my diagnoses, I have had all the surgical intervention a body can take, and I’ve exhausted the medicinal approach as well. There isn’t anything left to do but to live now and it is crushing me.
With no more consults on the books there is no more light blinking on the other side of this incredibly long tunnel. There is nothing left to try.
I don’t know how to do it.
It’s been weeks upon weeks of a near constant “This will never not be this way” echoing in my mind. Every time I take my meds, every pain spike, every single time I am restricted due to the pain I think to myself “This will never stop. You will never not be limited by this.” And to be honest I just don’t know how I am going to do it.
In an effort to relieve myself from this sadness I had a rather long overdue 2:00 am cry. Usually I let a little out here and there to ease the pressure when my bottle of emotions gets too shaken, but this time I let myself have it out. My hope was that I could cry out all of my frustration and hurt and move on. I cried so hard The Hubs had to hold me up.
I cried so hard I almost threw up more than once.
I cried so hard I was covered in tears and yuck and my eyes hurt for days.
I cried so much I thought I would run out of tears or shrivel up from dehydration.
I mumbled things like “It will never go away”, “this is too hard, I don’t want to do it anymore.” “I can’t do this forever.”
I thought it would feel better if I said all of the things I think in my head, if I let myself cry all the tears I push down most of the time. If just this one time I stopped shielding myself and my spouse from the grief I have been carrying around.
It doesn’t feel better.
I don’t feel better.
In fact, I feel the same; this really will never go away. It is too hard, and I truly do not want to do it anymore. The tears just keep coming.
Every time I see a fellow Spoonie improving on a medication I grieve. Every time I hear about how busy my friends’ day was I grieve. When I think about the travel plans I have with my family I worry I won’t have the spoons to enjoy it. When I look forward to the coming months and plans I have, I remember all of the things I’ll have to pace myself on or miss all-together. When I should be getting excited I feel dread and anxiety that I will hurt too much instead. I fantasize about what it would be like to be anyone else in my life but me.
To run errands after a shift at work, then make dinner and take my kids to scouts. To pull in the drive at nine-o-clock at night having put in a full day and still found time for dinner with friends. To pick up and travel without a care about how it will throw off my break-through medication supply. What would it be like to not have a task like laundry be the only thing I can accomplish in a day?
How is this a life? What am I supposed to do with a body that refused to let me live the way I need to live? How will I get through the next 50 years of this never ending circle? I realize I really don’t have a choice in this. I mean, the only way to not have this as my life is to stop living (and that’s not really practical or even remotely something that sounds appealing) so I have to keep going.
I have to wake up every day and do the things that people do. I’m not sure how to express how trapped I feel. How suffocating of a concept it is. To know that I will never live another day without feeling pain ever again. Can you fathom that? I can’t. And yet, I am living it.
I just don’t know how I am going to do it.
It’s too heavy sometimes and there isn’t a way for anyone else to carry it for me.
I just don’t know how I am going to do it.