Written by Amber Fuller, Owner and Clinical Director of Fuller Living
My pain this past year has been off the charts. My days have never been darker and I’ve never spent so many drives home from work swearing and yelling, wait, no, screaming at the Lord while begging for healing (vulnerable, I know). The deep, gnawing, nagging, non-stop pain that I feel from the moment I wake up to the moment I fall asleep. Let’s just say, I’ve seen brighter days, WAY bright days.
I was thinking about how months ago, in a blog, I promised a look into what window of my pain journey and have been pondering about what even to write about. The hope deferred has made this heart sick and it’s been really difficult for me to even think about sitting long enough (while in pain) to write anything. An idea had occurred to me though, and it is in fact, writing about what the sufferer, or at least THIS sufferer, would like YOU (in the general sense) to know.
To my children(I guess I don’t actually want them to hear most of this because it would probably make them feel bad, but it’s things I think daily):
I want them to know that I feel like a piece of crap parent most days, and on good days I feel like a mediocre parent at best. I feel guilty that I can’t do things that are active. Walking around target is hard let alone going to a trampoline park and jumping out my energy (and trust me, if I could, I would…it sounds SO fun). I want so badly for them to have these fun experiences and I pray so hard that they don’t feel the void from me not being able to participate. I attend, sit in a chair while in pain, possibly cry while they have fun, and then sit in the car to drive home. We tend to go to places that have a pool because this is an activity that I can do almost every time.
I want my children to know that I’m so thankful for the way that they selflessly pick up where I leave off. They are very aware that I can’t do certain chores and they really take it like a champ (they also gain monetarily and deserve this).
I want my children to know that I worry about them having the same back as me. I want them to use their young years to have fun, rest, go on adventures, because I’m deathly afraid that I brought them into the world only to experience the same pain that I feel as an adult (I don’t DARE tell them this part because I don’t want to open that door).
I want them to know that their cuddles, ‘I love you mama’s’, hugs, laughs, jokes, stories, and presence are what keep me going. They literally decrease my pain a tad when they do these things.
I want my kids to know that they are going to be such wonderful care-takers as adults, and I also want them to know that they need to take the time to be taken care of. I’m having to learn this in my adult years (like, no, literally I’m being forced to learn this), and I want it to be a natural thing for them. I don’t want them to end up in a co-dependent relationship where they end up thinking that their value lies in what they do rather than in who they are.
To Everybody Else:
1. We want some people to know that their actions can be pretty cruel. Because my pain happens on the inside and isn’t super visible, we often get looks that we don’t deserve to get. People’s expectations of us are greater than what I’m capable of. That being said, for every cruel act, there is an act of love that we get to experience on a daily basis. We’ve noticed just how many good men and woman there are out there in the world, that hold the door open for us, no questions asked. I often think about how when we go on vacation I ALWAYS use a wheelchair and people are absolutely so incredibly kind and caring. They take the time to help and be selfless, and I Want you to know that I see that, appreciate it, and it means the world to me.
2. We want people to know that we’re ‘sick’, and that any lack of acknowledgement of this at times is exhausting. We want you to know that we sometimes have to use a wheelchair to get around and that we’re ALWAYS in pain.
3. We want you to know that when you sprawl out on a couch while leaving us standing, we’re forced into a position of choosing either pain or to leave, and that my kids and husband are going to have to pay for it later if I choose pain and not leaving. I want you to know that I’ll end up in bed the next day and in tears that evening because they refused to acknowledge our invisible disability.
4. We want you to know that we don’t want your pity. We’re not looking for attention. And we don’t even want a handout. We just want you to treat us the same way you would treat somebody that has a visible disability.
5. I want people to know that tonight my family is planning to go to a carnival and I’ve been fearful of it all day long. Stuff like this used to sound SO fun to me, and now I’m just trying to figure out how I will handle the pain I’ll be in and what I’ll feel like by the time I get home. This is an every day occurrence for me when it comes to doing ‘fun’ stuff.
6. We want people to know that sometimes we’re in so much pain we have to take zofran to curb the nausea we feel from the pain. Apparently, this is a common occurrence because my doctor continues to prescribe it while understanding my condition and the extreme pain I’m in.
7. We want people to know that we can tell when you a.)don’t believe us, b.)mock us, c.)aren’t aware, d.) judge us. We’re going to be tight lipped about being able to tell these things, but we can definitely tell.
8. We want people to know that we are doing our best. We really really are. We get up every morning, crawl, no, like quite literally crawl, out of bed, figure out if we can handle putting our legs in our pants, figuring out if we can handle standing while putting on make-up, and trying to get to work on time. We want people to not question whether or not we are trying our hardest, because we are. The people who complain are probably the people that aren’t, and we don’t usually complain…at least to not to anything other than a blog…lol.
9. We can tell who is ‘praying’ for us and who is ACTUALLY praying for us. It becomes apparent after a while who’s in it with you for the long haul.
and to my husband, I want him to know that I appreciate him so much. He’s stepped up to the plate and filled in the gaps where I can’t and I’m just really really thankful. (We also want people to know that our significant others aren’t carrying any more or less than us…they’re carrying something different than us. We make up for it with our ability to problem solve, wisdom, and ability to talk).
And to the dispatcher at my husband’s work who knows he has a wife back at home who is in extreme daily pain and that he has two kids as well, and has the ability to schedule my husband to be home at night for his family, but chooses not to and continually chooses to send him out of the state for overnight routes on a weekly basis-you’re an asshole. And everybody else who is in extreme chronic pain is thinking the same thing about you.
Part 2 will be fun! My son is going to be a guest writer. He’ll be sharing about what children of chronic pain patients want their parents to know!