I am sitting in our den in the sun this morning. It is very cold again today so I am not going to my study group but I feel great in this sunny room. I have something to share today that I feel is important for my Rett friends. Because it’s hard to explain, and since most of us are unable to communicate easily I thought it might help if I shared what I have been feeling.
I’m having some good days but most of the days in the past month have been really hard. I feel so sad because I have wanted to feel good.
I have never been warm in the winter so I can rarely go outside. My whole life it’s been this way. I was so little for so many years that I could be wrapped up and carried outside but I couldn’t stay warm and it was really scary when I got cold, because I couldn’t say anything. One of the things I love about summer is being in the sun. It makes me feel so much happier. We have tried many things over my life to help. I have a light that is really bright. I sit in the sun. I take a lot of vitamin D, but it still feels so sad in the winter. The videos I have of water we took last summer is not the same as being there.
What I want to share is not just how hard winter is but how it affects my body. I don’t know what happens first, but I end up feeling so sick if I am sad. It becomes many other things than just being sad. I have had more seizures, I react to scents, I get so hyper I can’t stand to be in my body, I will either sleep for many hours and wake up exhausted or stay awake for days without sleeping. My body aches because I haven’t had the energy to go walking at Boutwell’s for many days in a row. Then I get so lonely because I love to be out. I miss many of my appointments to have fun and I feel isolated.
I got so hyper this week from smelling a strong scent on a caregiver that I couldn’t stop hyperventilating and holding my breath for about two days. It is something that is hard to explain but it happened when I was very young and first started having seizures. My Mom remembers that I would have seizures within seconds of smelling perfume, or laundry soap or paint or gasoline or many other things. I was very weak at that time. As I got older it was better and I could tolerate many things that used to make me sick, but it has come back and I feel very worried that it will affect my life again. I have so many things I want to do and I don’t like telling people that their scents or smells that are normal to them, make me sick. They get hurt, even if I am very nice when I type it out. I hate that because then I feel sad, but I feel better if my health is good and others around me are not wearing scents or have smoke on them. It’s so frustrating to me to have my body be so limiting.
I decided to share this because I thought it might be true for other Rett girls too. I feel content today, and I am so glad.