Being Told “I don’t know what to do”
That sentence isn’t really a good one in any circumstance.
It was mid June this year when I was halfway through a hospital stay when my neurologist said the sentence to me. He said to me that he didn’t know what to do anymore.
I was in hospital receiving a ketamine infusion to try and break the cycle of an acute migraine which had been going on for 15 days and non-responsive to other abortive treatments such as triptans and a largactil infusion.
It was absolute gut punch as I was still lying in pain feeling hopeless and uncertain about my job security and I had the specialist who I respected and listened to telling me he wasn’t sure what to do and we were running out of options.
At that moment that was the last thing I need to hear. I would have been happy if he said I don’t know right now but I am going to think about it and come up with a treatment plan. In the hospital bed I needed hope and I didn’t get any.
After reflecting on it all post and talking to people, they explained that maybe my Neurologist may also be experiencing frustration in my case that it has personally evaded him. This could indeed be the case.
This is when I decided I am the only one that is really going to have my own interests at heart and be my best advocate. So I decided to try and do my own research (when I felt up to ) and go to each appointment with a couple of suggestions or ideas.
I re listened to Migraine World Summit, I read journal articles, I went to dietitian and started writing a list of notes before every appointment about what I want to ask and what I wanted to get out of it.
Suddenly I felt less out of control. I hadn’t found a miracle answer in all my reading but I was taking back some control on my life from the disease process and ironically medical professionals.
As a trained medical professional I always appreciated a patient’s input in their care but I don’t think I ever realised until how important it was for them to have that sense of control and power back in their lives. I didn’t realise how easy I was for us as medical professionals to inadvertently to take power away from people that are already feeling so helpless. This is why is is so important for us to make decisions and suggestions regardless how small and have them listened too.
As I type this I ponder with the time line left on my medical leave from work and what I shall do about my career the only thing I know for sure is that this whole experience has taught me how important it is to be an advocate for yourself and others.
Please message me if I can help you with anything x