I spend a lot of time on my bed as I cannot move around much and it also terrifies me to get up because it will mean that I will have to struggle walking most of the time to the bathroom. Cleaning myself in the bathroom isn't that so easy, for most people it is just a leisurely affair with the soap and the scrub and I myself enjoyed it before these miserable things happened. I even take a bath during cold nights where everyone is fast asleep.
Now, taking a bath is a nightmare for me as it would take three to four rests to finish scrubbing my one arm alone because if I would get up from resting position of stooping, I would lose my breath and get a difficulty in breathing. By stooping I can breathe better. It is just shows that the bones in my back had already compressed my lungs.
It terrifies me to outlive my parents. I don't know what to do if one of my parents are gone for good. I am so dependent on them that I just wanted them to be around for a long time so I can get help and assistance from them that only a parent can provide and that no other can provide. So I am praying to God just to protect them from harm and always heal their bodies.
It terrifies me the changes in my face. I couldn't care less for my outward appearance because maybe some people might worship me for my lion-inspired looks and give me offerings, that would be much pleasant somewhat, but the changes inside my mouth are beginning to give me hardships in eating, drinking, and talking.
It is a big problem that I am contemplating about and it makes me sad that this is happening in my life, among billions of people on earth, I was one of the unlucky ones to get this rare disorder, so I am just screaming for help and hoping that anyone out there would hear me and offer their help.