Fighting the Tough Fight

This past week I’ve been feeling rather sick and very low key. I’ve spent most of my days laying on the couch or in bed. I have tried to make myself get up and get a little fresh air each day. On the better days, I  have made myself get up and bake or knit so I don’t go crazy from boredom. After a terrible migraine last night, I was a little wary about going out into the bright sun today, but as it was finally a nice day, I bucked up and went out. I decided to go see people for the first time in awhile, as well as, to deliver donuts to my favorite bike shops and mechanics. Recently, I have had so many down days that when I have days I can be up, I am just so grateful for every minute that I get. I revel in the beauty that is the town and state I live in. Being stuck in bed so much makes me really appreciate all of the things that I do have and I try to make the most of every moment of freedom I get.

This evening, as I had my post meal “oh man I’m dying” episode, I told Tom “I hate my body” and he said, “But you and your body are the same person” and I said, “Sometimes I don’t feel that way.” and, most of the time, I don’t. I feel like I am so much more than my body. I feel like my body is a jail cell that I cannot escape. Sometimes it allows me “visiting hours” or “outdoor recreation,” but I am never completely free to be me. In my mind, I am the hyper, physical, curious kid that I once was. I am an unstoppable athlete and artist. I have so much to say and so much to do. I am so curious and passionate about so many things. Yet, my body is like lead. It does not listen to what I’m telling it. It does what it likes and what it likes is to shut down and hibernate. It is hard to love your body when your body doesn’t love you. I am so much more than my illness. I’ve worked so hard at trying to have a normal life. I’ve pushed so hard my entire life and sadly done a lot of damage to my body in the process (but you cannot fault me for trying). Sadly, recently my body has been winning the fight more and more.

That being said, although I have had to give up almost everything that I’ve dreamed of and cannot even do some of the simplest things, my mind is still stronger than my body. I still fight it daily and strive for normalcy in anyway I can. I try to find joy and beauty in the simplest of things and stay strong and positive. I look for the good everywhere and know that even though the glass might be half empty most of the time, at least I can stay hydrated from what is left in the glass.

It is often hard to stay positive and strive for normalcy without skewing others perspective of what is going on. One way for me to feel normal is to show the positives in my life and really focus on them while trying to avoid thinking or talking about the things that are keeping me down. This often makes people believe that things are great or that I am getting better or in fact am fine. While I post photos of baking and videos of my future puppy farm (I wish), what I don’t show is that it took me all day to bake that recipe, or that I did it sitting in a chair, Or that I only got up for the hour that it took to bake. It might have also taken me three days to have actually felt good enough to try a recipe. I am a fighter and have fought for every little inch of freedom that I have. This illness is starting to win a little bit more each day, but I’m not giving up.

I fought this last weeks struggles by baking each good moment I had. It took me a really long time to complete each recipe, but I really tried to make myself get up in the moments that I could. I attempted several new recipes this week, some more successfully than others. The first recipe I attempted was to make Fruit Leather Roll Ups. Unfortunately, this failed epically. First, I used frozen strawberries instead of fresh because I had a bunch in my freezer. This made the boiling down process take FOREVER! It took so long that I had to stop and turn it off to take naps twice. Once, I thought I had it boiled down enough, I poured it into a pan lined with greased foil (like the recipe called for). I then put it in the oven to bake and only then realized that it would be about midnight before it was supposed to be fully cooked. I started the cooking process and then had to turn it off to sleep. I decided to go back to it the next day. I finally thought I had it done so I pulled it out of the oven and attempted to remove it from the foil. Oh man, did that fail! The foil had pretty much become part of the fruit leather. It would have probably taken me 2 days to rip minuscule pieces of foil out of the fruit leather. I looked up a different recipe and it said NEVER use foil. Thanks internet! One recipe said use it and one said NEVER use it…. Sigh! My fruit leather wasn’t meant to be I guess. Grumpily I threw it in the trash and went back to bed.IMG_8564

My next recipe was for Cheddar Dill Scones. I had a whole bunch of Dill left over from making Dilly Beans and I didn’t know what to do with it. My sister-in-law reminded me that she had previously brought me Dill Biscuits that were amazing so I started searching for a recipe. I found one that looked good (how can anything calling for a pound of butter be bad right?) and I had the perfect amount of Dill for the recipe. These scones turned out so light and fluffy. They melt in your mouth. Once cooled they are slightly too dry, but once warmed back up, the cheese melts and makes them smooth and delicious again. The recipe made a ton so I have a couple bags frozen in my freezer. I found the recipe here:

Today, after having such a rough night, I decided to ignore my recent decision to make only healthy foods and decided instead to make Chocolate Fudge Baked Donuts. I mean chocolate is healthy right? It has antioxidants in it…. Plus they are gluten free…. that has to count for something, right? Donuts have turned out to be incredibly easy to make, which is kind of dangerous because they can be whipped up so quickly. These donuts are pretty darn divine. They have chocolate chips in them that create a hidden treat. When warm, they melt into a fudgy moist donut. I found the recipe here:

Tom came home from work today just in time to watch the most beautiful sunset. I am really luckily to live a block away from this glorious spot.IMG_8582

This weekend was Burlington’s Art Hop which is a really fabulous festival of food and art. I was walking downtown while it was going on when my brother texted me saying that some of his art was in the festival. His art was part of an event called Color Off. A bunch of artists illustrated giant poster board  prints that anybody who showed up could help color in. I simply had to stop by and check it out and add a little color to my brothers picture. I snapped a picture of it too. My brother has the coolest artwork ever. You can check it out here: or here:

In honor of Burlington’s Pride event today stay fabulous everyone!



2 thoughts on “Fighting the Tough Fight

  1. Beautifully written and expressed. It makes me really understand what you go through. I liked especially your glass metaphor (?). I hope as time goes on that more people will find your blog, especially people who also have this illness.


    1. Thanks Nan! I’m glad you are enjoying it and finding it helpful and educating. I’m not really sure what my goal is with the blog other than to shed light on my life, as well as, a creative outlet since I can’t dance. Your positive reinforcement means a lot. Thanks!


Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )


Connecting to %s