Hope and Guilt

Guilt. A bad feeling caused by knowing you did or thinking that you have done something wrong, according to Webster.

With this disease, I’ve been struggling with feelings of guilt. Guilt about taking medications, being in pain, being unable to attend events, eating, sleeping, and many other things. Mostly though, I feel my guiltiest when I feel like I’m being lazy, or at the thought of being viewed as lazy.  I often find myself pushing to get through an entire to do list of errands and tasks. And for what? To prove that I have what it takes to run errands and feel accomplished? To show I’m a functioning member of society? To show that I’m capable? These are all noble attributes and nothing worth scolding myself for. So I can knock tasks off my list without a single nap. What am I trying to prove?

I feel like I’m fighting my disease in this manner. I want to do it all. I want to be that friend, that girlfriend, that daughter, that advocate, that yogi, that writer, that inspiration. I don’t want to have this disease impose limits on me or give it control over my life. But, I’m learning, there’s a difference between succumbing to my disease and letting it defeat me: or accepting the disease as part of me and learning to live WITH it.

Yesterday, I was exhausted. And I felt so guilty about sleeping in and laying around for a couple hours watching Netflix and then reading out on the porch. It was Saturday, and I was down on myself for going easy. Granted, I slept less than 5-6 hours a night this week. I was released from the hospital a month ago. I returned to work full time 2 weeks ago. I’ve moved houses, started remicade infusion and now my body has been hijacked by steroid side effects. I’m wringing my eye mask out and stripping out of drenched clothes in the middle of the night from sweating. My face is swollen, my joints ache, and I swing from happy to sad to wanting to throw things every ten minutes. And I’m feeling guilty about wanting to do nothing for a few hours on a Saturday morning.

I don’t want to make excuses. I grew up with a mom who struggled with depression disorders and always needed naps before doing the dishes or couldn’t make it to events or clean or remember commitments because she was too tired. I understand more about her illness now and don’t judge her for needing that time. I know now that this is just part of her, and she does what she can. But I hate when I need it for myself. I have the ambition and I want to feel accomplished. I don’t want to be viewed as lazy or unable.

But I am limited right now.

I’m still healing. And this disease does not have a cure. This disease does not have a cure. When is this going to sink in? Even though I’m nearing remission, I’m still going to be battling this and dealing with symptoms for the rest of my life. This is an autoimmune disease. My body attacks itself. And I’m fueling the fire with guilt about it. So how do I go from battling and fighting to acceptance and building a life around it?

I need a plan.

First of all, time to stop the negative self talk. So, I’m tired. That does not make me a miserable excuse for a human being. It makes me human. A human with a chronic illness. Is it possible to be tired and happy at the same time? What a novel idea.

Step one: If you’re tired, be tired.

But you don’t have to be upset about it. Just be tired, do what you can, and move on .

So you can’t get to all the items on your to do list of the day. Can some things get done tomorrow? Of course. What is really important? Is it even on that list?

Step two: Determine what is important to you

PS.. It should be what makes you feel good. Why have a list of things to do that make you feel worse? You already have a disease trying to do that, remember?

Now time to face the big guns. As much as I don’t want to admit it, there’s a part of me that does care what other people think. Luckily, I have an awesome support system that listens to my ramblings and tends to love me anyway. Other people outside of my circle don’t matter so much. But my inner circle, I don’t want to disappoint them. Sometimes it feels like they’re waiting for me to be “back to normal,” whatever the hell that is. And I don’t know that going back to who I was before is ever going to happen. I might always be a little bit limited. My endurance and strength may never be where they were before, at least physically. Mentally I could blow away the competition in those two categories. I know they’ll love and accept me anyway, but again, I don’t want to disappoint them. They’ve fought right along with me in prayer and hope and positive thinking and I don’t want them to let them down by not healing fully. I know it’s something that will take more understanding and acceptance what this disease really is. And I have to come to terms with this as well. I’m just not the same. And that’s not a bad thing.

Step 3:Talk to inner circle. Believe them when they say you are strong and it’s okay to rest.

They don’t think you’re lazy. They want you to be healthy and happy too. You aren’t letting them down by taking care of yourself. This is the part that you need to do in order to heal and make those prayers answerable.

 

So, these are the things I’m going to work on while embracing (wince) my inflammatory bowel disease. Dear colon, I hug you. Let’s be friends, okay? We’re in this together. Anyone else out there deal with the guilt? How do you manage?

Advertisements

Hope in My Body

Photo Collage Maker_8PleAd

For the May Cause Miracles that I am reading, day 18’s affirmation is I am thankful for my body. This was a challenge for me today.

Today marks one year since I have been diagnosed with ulcerative colitis. April 17th, 2013. And I’m worse than I have ever been. I’ve lost 7 pounds in the past few days. The pain is incredible. Eating is ridiculous. The steroid enemas are not working. I’m going to the bathroom 10-20 times a day. I had to leave work today after almost having an accident.

I spoke with my gastro doctor this morning. She said it’s time. We’ve tried everything to avoid the oral steroids. We tried the lialda, the canasa, the uceris, the steroid enemas and we tried it all again. I went gluten free, soy free, and tried to stay as stress free as possible. But is it hasn’t been enough. Something inside my body just isn’t connecting with the healthy me I want to be. So today, I started Prednisone. And I’m hoping that it works. This was not an easy decision. When I got the phone call this morning that the prescription was being filled, this needs to get under control and this is the next step, I was very upset. I immediately started crying, outside in the driveway while letting my dog out. I felt so defeated. And scared. I’ve worked so hard to get my hormones under control, and I’m in a good spot emotionally, and this could totally screw it up. I tried so hard to see some light, and I just couldn’t.

So I called my dad. I tried to keep it together but as soon as I told him I needed a pep talk I just started crying again. And we talked for a while. I calmed down, and he reminded me how strong I am and how I’ll be able to get through it. I’ve tried everything. And yet I’m still determined. Maybe I won’t get the side effects. If I do, I’ll be aware of it. I’ll know that I’m being crazy because the drugs are making me that way. One step at a time. One foot in front of the other. I really don’t care about the moonface or the weight gain or any of the temporary stuff. It’s the emotional theatrics that I’m scared of. So after I left work, I went and picked up the prescription. I cried again. All the way home. And then I got home and went to the bathroom and keeled over in pain. And the decision was made.

This is supposed to be such a happy time. My boyfriend and I are buying a house. I’m doing really well at my job. I have a great life. Except for this damn disease. And I’m not going to have that be a reason not to keep enjoying my life. I want to be out there.

And that’s the problem. I haven’t been able to enjoy myself the last few weeks. And I told myself that once the disease starts controlling my life and I can’t control it, I’ll go to the oral steroids. It’s time. I want to be able to hang out with my friends, happily. To go on road trips. To enjoy my summer. To work on our new house. To take my dog for walks. To do yoga. To be a good girlfriend, daughter, friend, person to myself. And I can’t do this when I’m stuck in the bathroom. Or laying on the couch. Or sleeping. I need to heal. And if this is what I have to do to get there, then I’m going to do it.

So, today I am thankful for my body. My body is a monster But it’s not an evil monster. It’s so strong, it kicks it’s own ass. It’s a ball of light that is meant to be shared with the world. It’s a vessel for healing, for sharing hope. For inspiring others. For living and loving and laughing and feeling the joys of life from the tips of my toes to the roots of my ever changing hair. It’s not for hiding away inside. It’s not for dwelling in pain. It’s not made to feel sorry for, not to deprive of joy. It’s made to nourish. To provide. To excel.  My body provides a haven for my soul. It allows me to love, to feel, to cherish. It gives me opportunities for change. It challenges me. It is beautiful. And it deserves to be loved.

And love is what it’s going to get. So, today, one year after diagnosis. I begin the drug that I tried for the entire year to avoid. I talked to my boyfriend about it when he came home. I get concerned some days that maybe this is too much for him. That maybe this is going to be the straw that breaks the camels back. And then he says “Anytime I start to get bothered by it, I think about how its 100,000 times worse for you, and that’s enough for me to deal with it. You’re so strong. You need to take care of you. Don’t worry about anything else.”

And then I realize that these are the thoughts of my ego. It tries to convince me that I’m not worthy of love, that I’m too sick, too many problems, to much to handle. That I’m a hot mess. Well, ego. I’ve got news for you. Your time for making me feel unworthy and sick is over. This year, this year I’m going into remission. The steroids are going to work. And the Paleo diet is going to keep me there (I’ll touch on this later). I have the ability to heal. This isn’t saying it’s going to be easy. It might not be. But it’s time

I’m not going to stop fighting for my health and happiness. I have hope in my body and my ability to heal.