Reaching out to CSF Leak Sufferers -Anybody out there?

 

My back is burning tonight and I have the dizzies when I stand. I think my CSF leak is not behaving. This frustrates me. It is limiting when this happens. I just found myself reaching out for a 2nd opinion on the "it's too risky to explore repairing" - I get why it might be, I remember the decompression surgery and 2 weeks on my back in a hospital bed to fix the issue caused by surgery - a surgery that was needed because my pain level was at the time was non life sustaining. It was that bad.  A hamster wheel, no doubt. 

What do other people do? I know you're out there and on the support group there's some chatter but I want to know how do you handle it all? The non stop tied to a bed, or your couch..wherever you lay flat. What do you do with yourself, your time? Do others understand? 

Television isn't even what it once was - my laptop is what I use. 

How long of down does it usually take for you? I'm noticing 5-10 days on average.

Do you think the outside world know we exist? Like we do? 

How do we make them aware without sounding like we're whining? Should we even worry about that, because, c'mon -wouldn't you have liked a heads up before you got smacked with it all? 

These are the questions that run through my mind off and on during the day, I wonder how many of us are out there, wondering the same...

Blog about it - post about it - share what you do. I need inspiration so I am putting it out there into the universe.......