In Honor of Valentine's Day Part I

I know Valentine's Day isn't until next week, but this is really the only topic on my mind right now: how lucky I am to be married to Lupe. For so many reasons I don't have the time to get into, but mostly because being married to someone with a chronic illness is no easy task. (Being married to ME is no easy task, coupled with my chronic illnesses and you pretty much are achieving the impossible...so the husband of the year award goes to...!) Pretty sure any other type of man would've left me by now, and I actually wouldn't have blamed him. But not Lupe. And for that I am beyond thankful. (Don't worry I'm not going to spend the next page and half just gushing about Lupe, this is going somewhere...)

I am thankful for having a man like Lupe as my spouse because as I witness other couples struggle with their relationships when one of them gets sick, I realize how "together" Lupe and I are. Was it always this way? No, of course not. The first few years were hard. We had to relearn who we were as a couple with chronic illness as a part of their lives. We had to redefine roles and responsibilities and learn a whole new level of patience and compromise with each other that now serves us well. And our marriage is stronger because of it and I have become a better person overall too.

On our wedding day...

This week I'll share with you what I'VE learned as the "sick one" to help keep a marriage like ours going, next week...I will ask Lupe to be a guest blogger and share what HE'S learned.

So what does it take? Here's what I've learned:

For the spouse that is sick:

1. Sometimes you just have to: "Shut the hell up and do as you're told." Belittling? Perhaps. Degrading? Maybe a little. But is it almost always because your spouse wants the best for you? Yes.

This was a hard one for me to learn and accept. I was born stubborn (thanks dad). And I hate being told what to do (thanks again, dad). So in the early years when I insisted that I was healthy enough or strong enough to do something that Lupe knew would only cause a flare I fought him tooth and nail INSISTING that I could do it. I didn't want to let go of the life I knew, but he could tell that pursuing that life was going to kill me. He was only trying to protect me from myself.

This is also true of taking meds, visiting doctors, going to the ER, driving yourself when you're heavily medicated etc. Just listen to your spouse. They care about you, they want what's best for you and even if you feel "fine".... they might be looking at you and realizing "he/she is going to collapse at any minute and I need to do something.." so let them. Let them help you. Take the meds. Go see the doctor. Get out of the driver's seat (literally and figuratively) and just shut the hell up and do as you're told.

Trust me, this will save you unnecessary bickering and arguing which will only make your symptoms worse.

2. Don't let your illness consume or define you. I know, this one is especially hard to do. Trust me, it's taken me years to return to the things I loved and that really defined me, but you have to try. When you're in pain day in and day out it's all you can focus on, all you want to do is get better. But don't forget, that your spouse didn't marry your illness. (Even if you were sick when you got married) There is so much more to you than being sick and THAT'S what your partner loves about you, so try not to lose that.

Lupe and I reading poetry together

I'm not saying you should ignore how you feel or seek help or talk about your disease. But remember who you were and what you loved BEFORE you got sick and try to keep that in your life as much as you can. You will BOTH be better for it.

Are there things I can't or choose not to do that I once loved? Hell yes! I would give anything to be in a play again. But I know that I just can't physically commit to that anymore. So what do we do instead? We take the time as a couple to go watch plays and that fills me up just as much. It used to make me very sad that I couldn't do theatre anymore, I used to wallow in that which of course only made my flare ups worse. But now that I have found alternatives and can appreciate theatre without needing to be a part of it, I am a happier person and in turn our relationship is happier.

3. Check yourself and your emotions OFTEN. Before you yell at your partner for simply walking through the door or before you start crying about how they don't "love you enough" ask yourself the following questions:

A) Have I been in pain all day? or for the last several days? If the answer is yes, you're probably more upset about the lack of relief you've felt than at your actual spouse. So instead of yelling at them, COMMUNICATE. Tell them: I've been in pain. I'm frustrated. I don't know what else to do, can you help me try and solve this.

B) Am I mad at THEM or am I mad because I'm sick? Again, this comes with things you have to think about. Did they actually do something wrong, inconsiderate, rude, disrespectful etc? Or is the daily exhaustion of being sick just wearing you down? It's ok to cry and scream and break shit when you've just had enough of being sick. But let THEM know that that's why you're crying, don't direct your frustrations at them, that doesn't do anyone any good.

Dancing at a wedding

C) Can this be fixed with: food, water, sleep, my medication, a bath, working out or a song? This requires being very in tune with your body. Listening to what your body is asking you for and responding to that. Too often (and this still happens) I will snap at Lupe or have a mini meltdown simply because I haven't eaten enough that day and I just didn't realize it. Or because my body aches and I'm fatigued and all I need is some sleep. It's hard to be nice to people when your basic needs haven't been met, so before you engage in an argument, listen to your body and see if it's trying to tell you something. If, after all your basic needs have been met and you still feel the need to confront your partner about something, then do so...but I garantee you'll be nicer about it at least!

4. Let go of "normal." This is your new normal. Stop comparing your life and your marriage to everyone else's or to what the media says it should like. You only have sex once a month, or once every two weeks, or just not as "often as everyone else"? SO. BE. IT. Give yourself a break, you live with chronic pain for christ sake! The fact that it even happens is a miracle!
You don't go out on romantic dates or exotic vacation getaways? WHO CARES?! Does your spouse cook for you when you can't get out of bed, or pick food up? Then he/she still loves you. Does your spouse kiss you goodbye and send you texts or messages throughout the day to see how you're doing or if you need anything? Count your blessings!

On vacation in Denver

Of course I wish Lupe and I could be more spontaneous and take random vacations or have fun adventures more often. But we can't. Because for me to leave my house even on a daily basis I need a litany of things. From meds and mittens to ensuring that I can eat the food wherever we go. It's also hard for Lupe to even PLAN romantic things because truth is, I may not feel well that night or that weekend and so his plans inevitably go awry. But guess what makes us an awesome couple?

We've learned to just roll with the punches and LET IT GO. He romanticizes me by spontaneously bring me flowers and fuzzy socks when I've had a rough week. He knows when I need rest and does the difficult task of canceling all our plans for the weekend even if it makes him look like a flake. I am thankful that he knows when I need to rest and that he is able to take charge and make sure I get that rest.

5. Accept that yes, sometimes you are the patient and your spouse is your nurse....but that is only ONE of the roles you each have to play. This one is hard. This one sucks. But this one is so very real. It's hard to be in this position as a grown adult (especially if you're young) but you just have to accept what is. As a woman, I want Lupe to see me as sexy, desirable, pretty, competent, strong etc. When he's helping you take off your underwear to go pee as you drag an IV bag into the hospital restroom...well there's nothing sexy about that. But you know what it can be? Funny. Especially if he grabs your boob in the middle of it. And sometimes, laughter is all there is left. When the sexy ain't coming back, and when you don't feel beautiful because your partner needs to sponge bathe or spoon feed you, just laugh.

I have learned that even if I don't want him to be, there will be times in our relationship where Lupe will have to take care of me and I will have to let him. But I've also made a promise to myself, that in the times when I can take care of myself and I have the energy to be all of those other good things, that I will. Because he deserves that version of me as much as I do. I cannot let that Jasminne die simply because it's easier to.

The nurse patient relationship we share is one most couples who stay together for a long time will have to live through. It just so happens that it will happen more often for us, but we know better than to get stuck there.

There's so much more advice I could give, but most of it just falls into the "general tips for keeping your marriage alive" category. Things like compromise and communication, not leaving the house angry, finding intimacy, make time for each other etc. But the truth is, what ultimately makes our marriage work is the commitment we have for each other. We are committed to building a life together, to making each other happy, to being selfish when we need to and pursue our individual dreams to make ourselves happy, and to staying.

The best piece of advice I ever got before getting married was the following:

"It's harder to stay. Leaving is easy. But if you can stay, if you can fall in love with the same person over and over again, year after year and stay...then you can do anything."

While I was in the hospital...and I'm still completely in love with this face!