I have always prided myself on having a high pain tolerance and not letting people see how my body was actually feeling.  I am starting to loose that control and it is a very unsettling and scary transition.  My muscles have been deteriorating for the past 18 months but it has gotten to the point if I don’t want people to see the pain I am in or the struggle I can have to stand up I have to stay at home more often than not.  The worst part and most noticeable – I have started loosing my hair – rapidly.  As little as 2 years ago I had to get my hair thinned it grew so thick, lots and lots of really fine hair.  Now I am loosing chunks a day.  My hair is becoming so thin it will barely stay in a ponytail holder.  I keep hoping that it will slow down and then I start treatment in less than 6 weeks and I won’t loose it all.
Yesterday we got notice that our apartment will be ready on August 10th. Â So, I went public with moving to Baltimore on FaceBook yesterday. Â Most people have no idea why we are moving and I couldn’t work up the courage to state why but baby steps. Â I find it interesting that I am able to write all of this in a blog for random people but I don’t want to tell my FaceBook friends.
I need to get over my need to be private. Â There are so many people that love me and care about me that will want to know how treatment is going.
I really hate being the sick girl.
I hear you! But, I also found a peace when I was finally able to accept that I am a girl struggling with chronic illness. Once I let others “in,” the support I received in return was so worth it. I used to try and “hide” my illness and symptoms (and I still fall into that role at times!) mostly because I didn’t want to burden others. But people want to know, to help, to support. And once I was able to explain, “I don’t know how I’ll feel/or what I’ll be able to do on a given day,” the relief was enormous! Sure beats hiding in the house! Hang in there!
PS- don’t take the stress and impact of a move can have on “us” chronically ill lightly! Even the hair loss could be stress response to this. Please make sure you’re taking care of yourself in all this… and good luck!
Thank you 🙂 It’s nice to hear from other people that have/are going through chronic illnesses. I am blessed to have an amazing support system of a big family and lots of friends. I’m working on finding stress relief activities…