Ellie’s skin problems bring with them other symptoms which aren’t always apparent.
It’s something that people don’t see, it’s not obvious but it is there all the time.
Fatigue. Ellie is living her life in constant energy deficit. Some days she doesn’t want to move from the sofa, some days she can’t quite manage the walk to school. Some days she is emotionally overwhelmed by the slightest request.
You may think, oh I saw Ellie skipping along to school the other day or running so fast her sisters couldn’t keep up. What you didn’t see was her school calling me to pick her up as she couldn’t physically get through the afternoon, or having friends round for the day and her having to go to her bed and have a rest whilst her friends continued playing. You also didn’t see her come home from a party today where she spent an hour and a half fully enjoying herself only to have to come home and lay in her bed. Her pale white face that is the tell tale sign of how she is feeling.
You see the best of her, the side that we are constantly battling to keep going.
I’m told this happens because her body is constantly in battle with itself and that all her energy is being used for repairing all that has been damaged. I am at a loss of how to manage it better.
Sometimes I just get tired of over thinking. Trying to second guess what is making her react or feel a certain way. If someone had told me 5 1/2 years ago that we would still be on this journey I would have said of course not, I’ll fix it. I have to come to the realisation that I can’t and I have to just ride this with her and manage whatever the next day brings.