Yesterday I had an appointment with the gastro team.
I am no stranger to problems in this area, suffering from dysmotility, GERD, a sliding hiatus hernia and difficulty swallowing. Over recent years this has progressed and I now take anti sickness tablets daily to stop me vomiting, and am finding food is getting stuck much more to the back of my throat when I try to eat or drink.
What I found peculiar about yesterdays appointment was just how matter of fact life changing diagnoses have become for me. I went in smiling, and the doctor was very friendly, we had a bit of a laugh and a joke, but in amongst it all the main message was ‘if its what I think it is, there is nothing we can do for you’. That basically translates too ‘sorry, good luck and goodbye’.
What is my reaction to this you may ask? Was I crying and unbearably distressed by this news? Of course not; I shrugged my shoulders, and carried on making sarcastic jokes. I find it so surreal that a serious diagnosis with such little option for treatment is just one more word added to the pile. I don’t think I even realised what it really meant: that I will likely continue to get worse, and that if I’m already needing a soft food diet (and struggling with that) what in earth happens when I get to the point where I can’t swallow anything at all?
I react this way because EDS gives me little choice. I have so many diagnoses of problems that can’t be fixed. Problems I will live with for the rest of my life in every system of my body. Not once have I reacted as I probably should have done because crying about it seems like a huge huge waste of my very limited energy supply. Each diagnosis leaves me a little more numb to my emotions, and a little more distant to those around me.
I haven’t mentioned these issues to friends or family – I haven’t called anyone to tell them, and I feel like I cant talk about them because these illnesses are so hard to understand. I don’t know that anyone could realise the implications on my everyday life without sadly being in this position them selves. EDS makes you a very lonely person.
I wish that I could react like you may do the first time you get diagnosed with a life changing illness. I wish that I wasn’t so used to hearing ‘theres nothing we can do’.
He told me there are ways to cope, and mentioned fizzy drinks as helpful (something I realised long ago as it forces food down my oesophagus which won’t budge by itself) – finally a medical excuse for my Diet Coke addiction! He even suggested that I should buy a Sodastream to help.
So here I am with a body refusing to work, struggling to eat and swallow without choking; but at least I get a Sodastream.