In Honor of Love Part II

Hey folks,  

I’d like to introduce myself, I am Jasminne’s hubby, Lupe.   Thanks for reading this and for supporting her on this journey and this blog.  She is an amazing writer and a damn great survivor. I know that if you are following this, then you have been affected or know someone who is affected by an auto-immune disease. 

I think about the very day Jasminne told me about her diagnosis and not a day goes by that I regret the decision to “stick around”, as she puts it.  I wouldn’t change a day or a moment.  In fact, I think, in part to her illness, it has reminded me of how human, how strong, how incredible she really is.  Even on my toughest day, she makes everything seem relevant. She is the soul to everything I work on. She’s bae, she’s honey, she’s everything that is right in my life. To those of you struggling with Lupus or Sclero or any other disease, you are in my thoughts and prayers. My heart goes out to you for the struggle and triumph that comes with this part of life.  You have my utmost respect and love.   Many blessing to you and yours.   AND NOW, ON WITH THIS SHOW!

So, as part of the Valentine’s Day celebration festivities, la wifey has asked me to impart some of the knowledge I have gathered from being the OTHER partner in this life with aliment.  Below then, you will find some of the things that work (and sometimes they don’t work) to make life a little easier if you are dealing with Auto-Immune issues.  Here goes:

FOR THE SPOUSE THAT ISN’T SICK:

1) Make sure you are comfortable with telling your lovely sick partner to “shut the hell up and

do what I tell you to do.”  Screw belittling and degrading.  I couldn’t give a damn if your feelings are hurt.  I need you to be as ok as possible.  Fight me and you lose.  Fight me and your disease?  Not a smart idea.  You will only tire yourself out and then I have to take care of you when I am angry.  I don’t do angry and reasonable.  I was born stubborn (thanks mom and dad) and argumentative and bold (thanks mom).  I love a fight. I love an argument. I am no control freak, but if I want my way on something, I get it.  So if all I want is for you to sit down and rest or for you to take your meds, just shut up and do it.

I know I sound rough, but the fact of the matter is, you as the not sick spouse, you sometimes have to be an advocate for the ill.   You might have to take charge of a situation and filter the information, medicine, and the world for your loved one.  You have to be ok with taking charge, even if the ill don’t want to be taken care of.  Fight. Fight for them and fight them if need be.  Be unafraid of it all, because in the end, you have to do what is best for your loved one. Even if they think they know better (I am looking at Jasminne).  

2) Find time for the things that make you happy.  Is this a selfish concept?  Hell yes. Are you are balancing the stability of wellness for your spouse and the stability and well-being of your life? Sounds heavy don’t it.?  It is. And, it’s a hard balancing act, so cut yourself some slack. You are human and deserve to be nice to yourself.  So if heading to the comic book shop to pick up something to read or binge watching a show on Netflix is a guilty pleasure, then indulge.  You are just as important as the life you take care of.  Don’t forget that. You are not just a husband/wife/nurse/provider.  You are the person who eventually fell in love with someone else special. Remember that and take some time for yourself.

If you are like me, then you get a guilty kick in the gut if I catch myself having too much of a good time, but Jas reminds me that she likes to see me happy and sometimes it helps to break up the craziness or the monotony of such a life.  

3) If your spouse yells at you for something, remember it might not be you. Be patient.  I   I can be in a perfectly good mood and then Jasminne can come in, in a jacked up mood and argue, be pissy and down right nasty with me.  I used to respond with a “what the hell is a matter with you??!?” and a fight would ensue only later to find out that she was in a lot of pain or her meds had her all jacked or the doc gave her nerve wracking news, any number of things that are related to illness or managing pain and none of them had anything to do with me.  So now, when she is in a mood, I just back off and then after about a half hour, when I can tell it was all the pain and the fatigue, I can ask what she needs.   The situation deflates itself and the hostility passes and then we can talk about what was really going on.   All it takes is a bit of open communication and patience.  Just because someone could direct their anger at you, which might happen, learn to read between the lines and get to the root of the issue.  Don’t take it too personally.  It might feel like a personal attack, but there might be something else to it. Check in, assess what’s up and if it’s a real issue, still talk about it.   Your ability to communicate and make someone else feel better is sometimes more important than your ego and winning an argument. 

4) Remember when to be spouse and when to be caregiver -  this one is tricky. 

Some days I am excellent at it, some days I suck at it.   There are moments, when making sure she is taken care of and as pain free as possible is the goal. But sometimes that is unrealistic and all I end up doing is being down on myself for not being to “do more”.   I would make that the goal vs. making sure she was happy, or making sure we got the chance to do something amazing.   I used to be focused on the wrong thing, especially early on.   Nowadays, I do lots of checking in.  Is she up to running around town and looking for new coffee shops?  Is she good with looking at murals all day or going to the beach.  If she is, then we go. If she’s not up for it, then I put on the gloves and make sure she is resting.  You have to learn when to take care and when to love; when to embrace and when to stay up, check for fevers, blood pressure and make sure she is sleeping well.  It’s a balancing act.  Sometimes her body runs the show, but sometimes, we get to dictate that and on those days, we party hardy (*NOTE, this means Netflix and chill or some froyo, or something).

personally used to have a hell of a time with this one. I am used to arguments (home training) and having to fight back when you get yelled at, ESPECIALLY if you haven’t done anything wrong.

5) Be Flexible.  If you are an easy going person, like me, then this will be no big deal.  But if you are like the wifey, who is a living agenda, then this will be hard.  I am a spontaneous kind of person, so when I want to go and do something and spend time with la wifey, then I just should be able to do that right?  We used to when we dated early on. But this changed once life changed.  Now, I have to check in and see where she is at with pain or conditions brought on by meds, etc.  If she is good, then we make the most of it.  IF she starts out good and then crashes along the day, then we make the most of it and if she is not doing well at all, then we make the most of it.   In the end, its all about communicating wants and needs.  Learn to give in if need be, some of the time.  Sure, someone might think you're a flake for backing out of plans often (because it happens often), but your closest friends know the deal and will respect it.  But don’t ever get your heart too attached to any one thing. If it doesn’t happen right now, it might happen later.  Things are always changing from one day to the next and if you are real particular about how you want to do stuff, it might frustrate you.  Roll with the punches.  You will find your life with your spouse much more fulfilling this way.   If I had a dollar for every time we tried to go dancing or out for drinks and then we stayed home because she had a crazy reaction to a drug or ended up too fatigued, we'd be rich.  If I didn’t know how to let stuff go, I would also be a sad man.  But she recoups and she wants to go out as bad as me sometimes and so, when you can you do.  You live it up and you change up and learn to adapt to the needs and wants for both of you…