Coping

Sometimes people say to me 'I don't know how you do it' meaning 'how do I live with dilapidated body'. (I prefer dilapidated to defective, damaged, or other terms.) Well, sometimes I don't know  how I do it either. But I do k now somethings.

Life with chronic illness is not something done alone.

• I have a team of doctors. All my doctors are at the same hospital so they can talk to me and about me. I appreciate it when they do ask questions of each other about my conditions because my medical history is complicated and involves several specialists.
• I have a 'team' of friends who try to understand my ailments as much as I try to understand theirs. If you don't have ailments, you don't get my life. (I do have friends who are healthy but they do not always understand.) These are the people you call when the doctor says 'but we need more tests to see what is going on here' or 'here's another sucky diagnosis'. Together we can figure out how significant the new issue is. There's nothing like having a friend on the other end of the phone who is googling away to help interpret the latest news.
• I have a 'team' of online resources. These range from specific websites to secret groups on Facebook where we can share our ailments without being found by family members before we are ready to share or just to b*tch about the latest news. One website for chronic illnesses I have found which is awesome for me is The Mighty. This is my current favorite. There are others for when my mood changes.

My point is I could not cope with this alone. I need emotional support to deal with this. I also know my emotional side is just as important as my physical side. Physical issues result in emotional issues such as anxiety, depression, stress, and more. I know I have to treat both so as not to implode. 

Yes there are days when I wake up and wonder how will I cope today. But I have learned to reach out. I have learned to say no. I have learned to be proactive in my care to speak up or take a day or afternoon for myself - the proverbial 'mental health' day to give myself a break. 

This is how I cope. 

To the People Who Don't Get It

If someone you know has a chronic illness, you should take a minute to walk in their shoes. First of all:

• They are not able to rest today so they can do something exciting tomorrow. They are going to rest today and then again tomorrow because that is what they need to do.
• They are not going to get a miracle cure at their next doctor appointment (that is why it is called 'chronic'). Its a lifelong struggle.
• Their chronic ailments complicate everything - from grocery shopping, laundry, leaving the house, to medical tests and procedures, sitting, standing, walking, and lying down. 
• They are not contagious (most of the time) so don't avoid or shun them.
• They are human beings and should not be written off. They still want to see and hear from people. They still want to do things. But maybe just at a slower rate or for a shorter period of time.

How would you be doing if all of a sudden you were living in a lot of pain and could never get comfortable, never mind sleep well? Or became dependent on multiple medications to be able to function as a semi normal human being? Or had to plan every second of your life to allow for rest between trips to the grocery store and the library? Or spent more time home alone because you were not able to go out and do things?

Think about it. And then call someone who has a chronic illness and just say 'hello'.