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Month: December 2017

Is Being Selfish Necessary with Chronic Disease?

Is Being Selfish Necessary with Chronic Disease?

Have you ever sat back and realized how selfish you are? No matter what you do, you have to think of yourself first, and then you can worry about others. For me, it feels so foreign. I have always felt pride in being that person people can count on. The one that will always listen and be there however I can.  Now, it’s all about me, no matter how hard I try to make it not be. It took me a long time to recognize that it’s not that I don’t want to be that person, but more I can’t be.

When it comes to chronic illness you have to learn boundaries. You have to accept that your health will be affected by the smallest things. Maybe that means being selfish, but I’d rather take care of myself than be sick. People might get tired of the constant talk of new symptoms or the phrase “I can’t because of…”  but this is your forever. We can get better, no we will get better but we can’t pretend to be what we are not. We have to continually monitor our health and there are no short cuts.

A lot of times I feel like a bad mom, wife, friend, sister, daughter, etc. I want to be a stronger force in the people I love lives. I want to listen to crazy things happening or enjoy barbecuing together. I’d love to have energy for an entire day to shop and go out to eat. I want them to know I love them dearly, and try everyday to feel good, so I can get to those things. I have as many good thoughts as I can (because that’s the cure, right!?). I meet every negative with twice as much positives. I work hard to get better so I can be me. I fight to show I care. I get overwhelmed when thinking this might be the new me. The all about me, me.

This isn’t something I can outrun or hide from. I tried, and failed miserably. It only made my health worse. So, I guess the question is can there be balance between maintaining my health and relationships?

The last few years of dealing with all these ups and downs I’ve been taught many lessons. I learned to not be so hard on myself or others. I learned to be okay with not being in complete control of absolutely everything. I’ve accepted some relationships aren’t meant to be. I have accepted that I will always have to manage my disease. Most of all I have realized there are no mistakes, I was suppose to learn something from this, and I am so lucky I did.

I am not going to feel bad. This is the way it is. I love myself enough to know being selfish is what is necessary.  I can love my loved ones harder because I am taking care of me. Any other way just won’t work. Realizing it’s okay to put me first so I can enjoy my life and the people in it has made this whole process a little easier. Getting rid of the guilt has been a challenge that I continue to maneuver through. I’ve learned the best thing I can do is to keep pushing. I refuse to give in, I met each battle with the eagerness to win.

One day it will be second nature to me. I have to take care of me first, so I can love you harder. That’s just the way it goes. In reality everyone has to do that not just those with chronic illness. If we loose ourselves in caring for others we forget how to care for ourselves, and it will catch up to us. I guess the lesson is that it’s okay to be selfish. Not in the only about me way but the I need this so I can do that way. I am going to love me because I am worth it.

***wrote freehand with limited edits, please be kind***

Is It Possible To Be Chronically Ill & Thankful?

Is It Possible To Be Chronically Ill & Thankful?

I am sitting here drinking the loveliest cup of coffee, enjoying the sounds of my fake fireplace, and reflecting on this passed year. I know most people do that around New Years but I always start around Thanksgiving leading into the New Year. This year has probably been one of the biggest learning experiences and test of my strength. It was a year of fighting for myself and advocating to figure out what was going on with my body. I learned I am not only capable but I have the will to get to the place I need to be.

I am so thankful for those who stood by me and didn’t let me close myself off. This year has been one of my most challenging years but somehow I feel more blessed than ever.

I’m not sure how a year of turmoil and pain turned into a year of triumphs. Maybe it’s because I fought for myself, or because I didn’t give in, even on my most painful days. I’ve always been determined to get better. I refuse to accept that there is no answers. I have gained so much perspective on people I thought would always be there and the unexpected ones that were. I am able to see the beauty in hardships and coming full circle. I have not actually completed the whole circumference but I am steadily moving forward. In my eyes progress is progress. I have to appreciate every win, big or small.

This year was painful, not just physically but emotionally. There were a lot of growing pains. I had to accept I have limitations, I fought it, but in the end it made it worse. I had to learn to love myself with Lupus, Ehlers Danlos, and all the crap that comes with them. The biggest lesson was the relationships I lost. The hardest thing was to let go, knowing the issue is your health. Understanding anyone you’re close with has to accept your diseases. The saddest part is that you love them so dearly, but you can’t change them and you can’t take away your illness. Most of all, you have  to know NONE of this is your fault…NONE.

The beginning of the holidays are significant for everyone but this year is especially for me. I’ve grown. I have fought. I have accepted. I have loved. I could not ask for more of a joyous year. All the craziness has actually helped me appreciate life. The little things, like my kids wanting me to make them hot cocoa, or my husbands face stuble tickling me when we kiss, even the people that aren’t willing to go away…demanding that I let them love me.

This has been one of the best years of my life. A year of I can’s. A year of trusting myself and my instincts. A year of letting go of shame and insecurities. I am so freakin thankful. I love my family more. I love everything more… food, my hair, getting out of bed, going to the store, drinking tea/ coffee, driving in the car, laughing, crying, talking, texting, and on & on. When it gets taken away, because everything is out of your control, the moment balance creeps in you can’t help but think, WOW life is good.  I hope you are able to find the few things that have made your year brighter.

It can feel impossible to see any good when it seems like everything is out of control. The thing is, we are alive. Yes, we are in constant pain and we feel alone, but we get to try again tomorrow. Fight for yourself, demand for better care, and know you are not alone. There’s a whole group of us trying for a better day. Every single day I have to ask for help, this woman that has always been overly independent needs help. There’s a lesson in that, I have grown to appreciate more and love harder.  I get to see life in a totally different way than when I was healthy. For all of you, please try to find any glimpse of appreciation. There’s so many downs, we have to shine a light on our ups.




***wrote freehand with limited edits, please be kind, thank you***