When fear steals hope.

It took me a few days to recover from my last infusion. It felt different from before. This time I was exhausted and had a killer headache. You know those ones that creep up the back of your neck? Yeah. And it lasted 3 days. Usually I’m good to go after a day and a half. So I consulted google and scared the shit out of myself (not literally in this case) with what could happen from being on remicade.

Obviously I already knew all of the side effects. I had researched it to death while I was in the hospital waiting for answers on what the hell is wrong with me and why I wasn’t responding to anything. But this time, experiencing a different side effect than just feeling crappy in general,  it cracked me open.  And I let that fear seep in and put a black veil over my life. Everything became negative in an instant.

I have this stupid disease and am going to have to deal with side effects and consistently feeling crappy for the rest of my life. . Tears of frustration and red were all I was seeing and I stormed about the house doing mindless things that would allow me to slam cupboard doors and take out my anger at this disease . And then I went to bed early and cried for a little while. Scared, sad tears. Crying isn’t my thing. My boyfriend came in and consoled me while I admitted I was scared. It’s scary. But things change all that time and we don’t know what they next medication is going to be. I’m not rejecting this medication. I just had a different experience this time. And either way, I’m still here and I’m okay. He reminded me that it’s okay to feel like that but if I just look at the bad what ifs, I won’t see the good ones.

So we played with the dog and I felt better in the morning.

I get really hard on myself when I feel bad about my disease. I was given this because. Just because. I don’t get to know why. And it’s not supposed to be a burden. It’s a gift (ha!  #thingsIthoughtIwouldneversay) . See my last post for all the good things I’ve gotten from this disease. And who knows what good things are yet to come.

I have to trust in that plan that I can’t see and know that this is so much greater than me. I must be less. And I must give more. When fear creeps up on me like that it steals my joy. It steals the beauty of what this life has to offer. It steals my opportunities. It steals love and blocks out the light. It’s okay to be sad. It’s okay to be scared. Let the tears fall and be frustrated. This disease is fucking frustrating. I felt like that needed to be enunciated.

But those feelings can’t drive how I live my life. It’s not okay when fear steals my hope. Or my purpose. Don’t let fear steal yours too.

This is one of the main reasons I’m so excited for tomorrow’s hope warrior. Please keep your hearts open. And remember, tis the season.

 

 

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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?