Monday, February 8, 2010

Hold on to Hope

I have been thinking about starting a blog like this for a while. I was a bit concerned about how interesting it would be though. The majority of girls that I see in LiveJournal's community EGL seem to be able bodied and mostly pain free, save for a couple. I'd find myself a little envious, seeing photos from meet ups of exploration and the "jump photos". I can't jump. Not any more, But I still stayed hopeful, and thought about this blog a lot. Today I decided to plug my netbook into the modem, as my router is broken, and look at this weeks Lolita Valentines and Lolita Secrets. The Valentines were cute as usual and lifted my spirits. The secrets tend to be snarky or filled with drama, but one really hit home and I want to share it here.

I couldn't have said these words better myself. I know exactly how the poster feels. Everyday is a challenge, and most days I don't even leave the house. On those days I end to sit around in my PJs and try to cope. I do little things like draw or some sewing, but even that on some days is too much for me. Some days I just throw on a t-shirt and jeans if I have to go out, coz I don't have the energy for putting on the frills. I spend the rest of those days depressed and feeling awkward.

So, here I am to share the tips of how I make it through each day, living beautifully. I hope you can take something away from my posts whether you are completely healthy, have the flu, or a chronic pain disorder like I do.

I hope you are feeling well today, and I will see you next time.


  1. I left a comment on that secret post, but I think I will reword here too!

    Don't focus on the pain, for starters. Don't let it dominate your life like "I can't do this because of my illness" "my illness prevented me from having fun today" etc. Mental thinking will take you down more

    Doing something you enjoy (tea time, art, watching a princess-y movie, etc.) can make the life a little more beautiful, and take your mind away from being sick

    I forgot a lot of what else I wanted to say XD I think chronic forgetfulness should be a disability ;3 jk, I am very grateful to be healthy and mobile!

    I <3 you Ava, be strong!

    P.S. I have no idea why Alt codes don't work on my mom's lappy, so I can't have a real heart T^T

  2. I can't begin to comprehend what your experience is like, but I feel so deeply for you. Your strength to start a blog like this even in the middle of your illness is so admirable - I can do nothing but cry for your suffering and the suffering of other ill lolitas, but the optimism of this blog is upliftingly inspirational. Thank you for sharing your thoughts and tips! I'll definitely be following you, and I'll spread the word about this blog as much as I can. <3

  3. Hey, Ava! I'm just reading your blog posts now. You are a diamond. It is a comfort to see that your life is much like my own. Every day is an enormous challenge. Each moment is about getting through the pain. Your honesty is very much appreciated.

    It's difficult to express the negatives of our illness with the simple intention of being heard. It is impossible to vocalize the deep, constant, unforgiving pain without sounding as though we are in despair. It's our constant reminder of our physical limits.

    I know that I am not always living moment to moment in despair. However, during the first year or so of my illness, I truly did feel as though my life was over. I have learned so much since then. My life isn't over. It is just beginning. Kudos to you for expressing yourself! That takes courage. I see so many blessings amongst all this pain. All of our days aren't just about the pain. It's about dreaming. Also, it's about finding joy in the little things. Your ability to find joy in the little things is a blessing. I believe that your journey is just the beginning - the commencement of an adventure of living life beautifully with the pain. Nobody can make pain beautiful, but you can make your life beautiful despite the pain. You, Ava, are a creator of beautiful things. You can weave your magic into making those who live with chronic pain visible and beautiful. You can show the world that we truly are beautiful despite the ugliness of pain.

    Much love to you!