It’s very rare I have stay in bed days. Even on a bad day I still feel like I should move to the couch to feel like I at least moved.
I think one of the hardest thing about having an invisible disease is waiting. You feel so many things at the same time but typically have no answers as to why. For many it takes years for a diagnoses leaving you feel confused and empty. You begin to wonder if you ARE crazy. Maybe what you are feeling is in fact a figment of your imagination.
Unfortunately I have discovered that discrimination and ignorance towards those with disabilities (invisible or not) does not just reside in the “Healthy”. It is within our own community as well. I am apart of a number of forums and support groups on-line. Meeting people who understand what you are going through can be very beneficial. We discuss symptoms and families and feelings and so much more.
I had the unfortunately fortunate experience of seeing one of my closest friends suffer a bad flare over the weekend. I say fortunate because although I could possibly take a good guess at what my friend goes through, I will never truly know, and seeing it, is the closest I will get to understanding it.
My mom was recently asking me about the symptoms of my various conditions. Her and I both have horrible memories so I thought to make it easier on both of us I would create this chart so she can see side by side what I live with every day. Of course there are a million more symptoms to all of these conditions, but these are the common ones.
I read an article on psychology today which compared the “Before” and “After” snapshots of Chronic Pain and Illness. Its funny, I have thought about this before. In a conversation with a friend with a Chronic Illness we described how the illness changed us.
So here are my before and after snapshots (without including the list described by Tony Bernhard, J.D. in Psycology today which I have posted below.)
I didn’t understand what a fibro flare was in the beginning. I thought ” I’m always in pain, how do I know when it’s a flare?” What you don’t realise is that every day pain will become normal. Feeling sore or achy will become life so although it is there and you are aware of it, it becomes something you manage to live with.
I say “manage to live with” and not “something you manage”, because when people hear the latter, they thing you are fine and it’s gone. It’s not gone, you have learnt to multi task.