It’s one thing to not be able to sleep. It's another thing to also not be able to do anything else while you lay awake hour after painful hour counting body parts that ache and burn and cramp and sting.
There can’t be any greater aggravation than being so sleepy and bone tired, exhausted and spent that you aren’t even able to get up and do anything pleasing or productive with all those sleepless hours. And knowing that the reason for your bone tired exhaustion and fatigue comes not from the hard work of being a productive member of society, but rather from an autoimmune disease where your own body has betrayed itself by attacking all that is good and useful and necessary for life.
While my heart screams, “I’m not done!” my body screams, “Yes you are!” And so the battle goes. Day after day after day.
And so I look for meaning in all of this. What am I supposed to do? I am supposed to do something. Because there is a good reason and a higher purpose for everyone and everything on earth, good and bad. There is a silver lining, a lesson to be learned. Even in the wake of the most terrible disasters there is good to be found, if you look for it. And so I look for it. Everyday. I look for it. And I count my blessings and I add to my list of things to be grateful for. Everyday.
And somewhere in there lies hope, sometimes big, sometimes small but it is always there. Hope for a better day, hope for my children who are also affected by their mother’s disease, hope for those who are affected with this disease way worse than I am. Hope for a cure.