Having Time Alone

My Mom and I planted this pot for Mother's Day

I have not felt great lately.  I am discouraged that life is so hard.  I have been so hyper.  It makes me hold my breath and hyperventilate all day long.  It’s not fun to feel out of control.  I know that my other Rett friends struggle with anxiety too, but I don’t see them acting the way I do.  I haven’t been able to breathe normal most of this week.  I was so discouraged yesterday because I was feeling how hard my life was.  I don’t feel like I have much interest in living in a body that causes me so much struggle.

I’ve had a few days in my life where I didn’t hold my breath and hyperventilate until I was exhausted.  It has become really sad for me.  I thought a long time about whether I should write about this on my blog.  But since I am honest about Rett Syndrome and how it has affected me I decided to be honest about this too.  I have had great health and I have had opportunities that other females with Rett don’t have, but I have not had an easy life.  I struggle daily to find peace and calm.  I struggle a LOT with anxiety.  I struggle with breathing normally.  My stomach often hurts.  I’m living in a body that gives me so little rest.  I get discouraged when I see how exhausted my parents get, trying to meet my needs.  I like comfort as much as anyone does.  It’s so difficult to love people so much and know that my needs wear them out.  I never forget how hard it is for others to care for me.  I haven’t wanted to have so many people in my life who are here and trying to figure out how to best meet my needs.

I haven’t had a day in my life that is just for me.  That I do whatever I want.  That I just stay in bed if I want.  I can’t go anywhere by myself.  Even going to the bathroom, where most people have privacy, I have none.  I don’t see how I can ever be alone in this life.  It’s so stressful for me to always have someone in my site.  I decided yesterday that everyday I want to have time alone in my room.  I asked my Mom to help with this so I could listen to music or book on cd by myself.  I’m glad for this because I have some peace in my room.

When my days seem to hard to live I just pray and ask God to see how I can help others.  If I just have to struggle and I can’t use it to give others insight into Rett Syndrome it’s not worth the pain.  I hope you understand that there are many days that those of us who live with Rett Syndrome live, wanting something more from this life than separation and pain.  It’s not easy to be this discouraged, but I wanted to let you know.

Love, Karly

I love this garden fairy. She is in the living room now by our plants.



2 Responses so far »

  1. 1

    Leah Wasieleski said,

    Hi Karly,
    It has been quite awhile since I have seen you. I check up on your blog every so often and I just want to say how much I appreciate your openness and honesty. It breaks my heart to read a posting like this and to get a better picture of your pain and frustrations. But I know from reading your blog that you also have great days where you are encouraged and inspired. You struggle with something that the majority of people don’t have to deal with, but you are also a human just like everyone else, and we all have our good days and our bad days. You are so inspiring to so many people and I hope that you can be reminded that although it doesn’t always make sense, God has put you in this body for a reason! And we can’t always see the bigger picture. I’m glad that you decided to spend some time alone everyday, that is so important for all of us!


  2. 2

    TJ said,

    just wanted to say that you are an inspiration.
    Best wishes from Finland


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