I am participating in the virtual conference about invisible illness this week and let me tell you there are some great speakers this year. Check it out at: http://invisibleillnessweek.com/virtual-conference-2/

I am writing this post for Erwin. I met Erwin and his family in the hospital. He asked me if I had issues with sleeping. Yes, I do. The fact that I wake up several times during the night coughing and needing to suction does not allow me to get restful sleep, so I sleep at odd times during the day. I cannot go full speed ahead anymore with a project, I have to take small breaks through out a project and pace myself. That used to bother me, because I compare myself to my sisters, friends, and other women that I know who run full throttle ahead and don’t take time to sit down and breathe. In reality, that is not how one is supposed to live life. You are supposed to smell the roses, do things at a pace that is comfortable and not damaging to one’s spirit. How do you do that?
One thing that I am learning, and I will use sleep as an example since that is my word for today, is what I need to feel rested and what my sleep patterns are, are mine, not anyone else’s. I do not need to compare and chide myself because I don’t go to sleep at 9 PM and get up at 6 AM. That my sleep schedule looks like this: Go to bed at 9 PM, get up at 12 AM, suction, go back to bed at 1 AM, get up at 4 AM suction again, go back to bed at 5 AM, be up in time for Myron to come at 10:45 AM and get things done until he leaves at 3 PM, and suction, then take a nap at 4 PM, get up at 6 pm, suction, eat dinner. Do you see a pattern; I suction a lot to keep myself unclogged and breathing. I also don’t have a long stretch to sleep because I wake up coughing and needing to get the mucus junk out. My 8 hours are broken up throughout the day and guess what, that is okay.
I do not feel ashamed about how my schedule looks like. I do what I can, thankfully, I do not have responsibilities as in taking care of children, husbands and spouses can take care of themselves, but children cannot. The key is to modify and do what is best for you. Sleep is important, and you are not less of a person because sleep does not come at a set schedule and I often times do not sleep when everyone else does. My body is healing and I am fighting something that no one else is and for me, this is what I have to do to keep myself sane and healthy. I am not ashamed of that.
In fact, I am posting this Monday night because I can tell from how my body is acting that this is going to be one of those long nights when sleep takes a long time.