For the Loved Ones of the Sick Ones

List of Characters:

Gabe: Boyfriend, Likes to be doing things, Going places, Shooting things.

Mary: Girlfriend, Likes to lay around, Drink coffee, Talk about death.

Monty: Dog, Drinks out of toilet, Plays hard, Sleeps Hard.

There’s something sick people tend to forget sometimes, and this is that being sick isn’t only a struggle for us, but also tends to be a struggle for the people around us, too. It’s nobodies fault really, it’s just the reality of these circumstances. Spending the last month with Gabe, I saw how the illness effected more than just me, and the trouble it can stir up in our everyday relationships.

Gabe seems to me, limitless. It’s like he never tires. He can go and go and go and then he can go some more. Sometimes I tire just watching him. I envy his energy and resilience. He can only sit around for so long before he starts to go stir crazy, and that’s a huge fundamental difference between us. I don’t feel the need to be going places and doing things, and Gabe, well, does. “Do you want to go drive bumper cars today? Do you want to go to the shooting range? Do you want to go hit golf balls for a while? Do you want to go camping tonight? Do you want to get it on? Do you want to go jet-skiing? Do you want to go to an amusement park?” All of these questions are usually answered with somewhere between a grunt and a moan, sometimes a staunch “No” and sometimes a yawn and a “Maybe” if I’m feeling dangerous. Poor guy. How he ever ended up with a girl who barely moves I’ll never know. It’s easy to see how how he’d become disheartened.

It’s depressing, I know. The fact that an “amusement” park sounds like everything except amusing is depressing. But I’m just so used to the consequence of me saying “yes” to the normal activities that normal people find fun- and that is, a crash–that it has become my conditioned response to say no. I can’t drink anymore. I can’t be on my feet for long like I used to. I can’t stay up late or get up early. Sometimes a trip to the grocery store puts me over the edge and I pay for it. When you’re barely keeping your head above water, the slightest activites can drown you. So I’ve become conditioned to say no to a lot of things, simply because I know what will happen when I say yes, and often it’s more than I can handle. Sometimes I say screw it, I go and do what I want, knowing somewhere deep down that I’ll pay for it later. Every now and then, it’s worth the price I pay. But it’s rare. More times than not, I’m kicking myself for saying yes.

But as tired as I get in saying “No,” I see that it’s just as waring on Gabe in hearing “No.”  I’m so used to thinking “He’ll never understand what its like to be sick all the time” that I never considered that I’ll never understand what it’s like being healthy and dating a sickley. Especially one that shoots down your ideas of fun and takes up ample couch space. The truth is, if you’re going to be with someone who has this illness, you have to be independent and comfortable with leaving your loved one behind and doing the fun things without them. I know it seems incredibly depressing, but what is harder for a sick person, is trying to keep up with a healthy person. It just doesn’t work.

What’s also hard is the desire not to disappoint people. I hate the feeling of letting someone down, canceling on plans, or suggesting activities that only a 90 year old would be enthused about (How about we play scrabble again for the 90th time?) The problem is, no one else will say no for me. No one will suggest we stop and rest every thirty minutes. No one will make sure I’ve taken all my pills. No one will play lifeguard and see that I’m waring down and suggest we cut off the fun and go home. Only I will do these things. Which sort of turns me into the negative nancy of fun and activities for others. It’s exceptionally difficult to suggest to young, energetic, tireless twenty somethings that we wind down the day and lay on the couch and talk about life and existential questions. Doesn’t that sound GREAT?!?! To most people, no, it doesn’t. And that’s where the trouble lies.

This illness has strained many of my relationships- intimate, friendly, and familial. I remember once my brother and I had a shouting match outside an NYC restaurant because Nick wanted to go on a walk to digest his meal, but I was feeling especially fatigued and didn’t want to go. “It’s just a brisk walk! It’s good for you!” And he honestly thought it was, but I knew it wasn’t. I was at my physical limit that day, and a 5 block walk was out of the question. He stormed off on his walk in frustration and I taxied it home with discouragement. But I hadn’t really educated him on just how sensitive this illness was. I was sort of still trying to live like a normal person back then, so when the sickness would come out and demand  I obey it, it left everyone in a state of confusion. We’ve come a long way since then. Now I hear him defending me to others, even suggesting we cab it home when I consider walking. We’ve both learned a thing or two.

One question I ask is: Where do you draw the line? If I keep saying no to everything, won’t I eventually turn into a hermit trapped in a dark house with zero friends and zero fun? Because that sounds especially awesome. Wait no, that sounds terrible. The lesson for me has been finding the middle. Finding the area of compromise which keeps me alive with the pulse of life but doesn’t land me crashed in bed for 3 days. There is a middle ground, and part of my education in the last few months has been finding it. I’m still learning, too. In truth, it’s painful saying no all the time, when what you want to say is yes. But again, I have to be the master of my own domain! My domain happens to tire out after about 30 minutes of doing almost anything..standing too long, sitting too long, walking for too long…it’s ridiuclous, but it’s reality. And it doesn’t mean you have to turn off the fun. You just have to get creative. It’s also sort of a “Pick Your Poison” kind of situation. Do you want to say no and momentarily suffer sadness? Or say yes, and physically suffer for at least the next day?

Gabe and I are never going to be on the same level physically. This is someone who chased down rabbits on foot and wrestled an alligator on our first date (hence his nickname Gator) and worked 12 hour shifts of manual labor on an oil rig. (I’ll get to these stories, soon.) I..um…showered yesterday. So, there’s a little space between us when it comes to physical capablilites. But, we’re learning. I’m learning how to say no but stay positive. He’s learning to do the things he wants without me, and somewhere, in the grey of life, the circle of compromise, in the middle..we meet. All we can do is try.

To all the loved ones of sick ones out there, I know us sickley’s are a pain in the ass. But we do appreciate even the effort to understand. I see now, I need to try and understand, too.

Health, Happiness, and Compromise.

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17 thoughts on “For the Loved Ones of the Sick Ones

  1. Thank you for this. Your take on this is really helpful.
    I wish I had acknowledged my limitations earlier so as not to strain or sabotage my relationships.

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  2. I understand your comments here are some of the more serious aspects of living through the day, but I had to giggle when you talked about amusement parks.

    In my humble opinion, amusement parks are– well, not amusing. No matter what is actually said, being asked to go to one sounds to me like this: “Gee honey, doesn’t getting whiplash on a ride, eating food of questionable origin and cotton candy til you reach a sugar-induced Nirvana while being bombarded with top 40 tunes blasted through a centuries-old sound system amplified by a distorted megaphone sound like fun? Ooo, let’s go !”

    What I am suggesting is that on your most depressing days, just know that the fun you might feel you are missing, isn’t necessarily a loss. Chalk a few up as wins.

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    1. Hah I realize this response is ridiculously late. It may not even make it to you..but I was looking back on a few posts and reading comments I never saw originally for some reason. Your description of amusement parks is pretty much perfect. Couldn’t convey it better myself. I once saw a commercial for Disney Land during a particularly bad crash, and I said out loud “Oh my God, that looks so miserable.” My mom laughed at the response..this is what I was saying about THE HAPPIEST PLACE ON EARTH!? Hah, too funny. But you’re right, saying no to things doesn’t have to be a loss, and many times, we only think we’re missing out on much more than we really are. Healthy people just like to GO, so that’s what they do. As sick and physically limited people, it’s our job to let them go and do what makes them happy, while accepting our wiser choice to sit it out. It’s never easy, but being aware of it helps. Thank you for writing, and I”m sorry this is hmmm, four years late? Hope you are well.
      -Mary

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  3. thank you so much for this. it was exactly what i (and i’m sure many others) needed to hear. thanks also for sharing your journey in other posts as well…

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    1. thank you for reading and for writing. this has a slim shot of getting to you, as its FOUR YEARS LATE, but I’m taking a look back at posts from a while back and seeing comments I didn’t see initially. Anyway, just wanted to say thanks for the support and I hope that you’re doing well, wherever you are. I am extremely grateful if sharing my experience is helpful to anyone at all. I hope this comment makes it to you somehow. All the best,
      Mary

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  4. I can’t think of anything else to say but AMEN. It’s really hard and sad for me to say ‘no,’ but I feel even more upset when people just stop asking. Talk about feeling distant…

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    1. I feel you there buddy. Better to at least have the choice and “sit it out” then be looked over or dismissed completely. But it’s super easy to become isolated with this thing, We gotta keep our toes in the water without falling all the way in :) Sorry this is so late..thank you for reading, and writing. All my best,
      Mary

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        1. Kimberly! Unrest is a documentary about MECFS–we hosted a viewing event last night at a local museum/institute in order to raise awareness and hopefully funding toward research. (The Open Medicine Founder was there and gave a great talk at the end, I will try to blog on the whole thing very soon and post videos of talks after.) Anyway, I highly suggest seeing this film. It is moving and enlightening in a lot of ways, even for someone who HAS the disease. I can’t recommend it enough, and I believe it should be available to stream on iTunes. If not yet then very soon. I highly, highly suggest you and maybe some friends or a partner watch–it’s eye opening and puts things in a context that is watchable and riveting. Check it out! Thanks for responding, glad to know you’re still out there in the blogosphere :)

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  5. You find your limit, perhaps go a bit beyond it, but then draw the line. If they love you, they will understand. As for sports, they’ll have to find some MALE buddies to pal around with.

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    1. Hah, very true. Me and sports go together like bedsheets and sand. ;) The right one I’m sure will come along and understand, but it will take a very particular person. I’m hoping he exists, but if he doesn’t, I am lucky as hell to have the family I have in the meantime. Don’t know where I’d be without them. Thanks for reading and writing…sorry I’m four years late to reply :)

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  6. Limiting myself has actually put me on the same level with my husband. He’s much more of a homebody, so my limitations don’t bother him. When he actually does want to go do something, those are the times I push myself if at first I might have said no. Like yesterday we took a hike on an easy trail and today the muscle in my right calve is soooooo tight it hurts to shuffle. But it was worth it :)

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  7. I live these moments every day of my life. It’s gotten to the point that people know I can’t leave the house to see a show or out to dinner anymore.

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