The thing about blogging is that, as well as sharing our experiences with others and maybe helping those who are facing similar journeys, it has become a form of cheap therapy for me. I can pour my heart out into my words, delete those that needed to be said, but not shared and publish the rest for the world to see and comment on. For those of you who know me well, you will understand that I’m not very good at sharing when I’m struggling with life, even to my nearest and dearest, and yet I can express my emotions through a few deft strokes on the keyboard almost without pause.
My Mum, who I know will be reading this and rolling her eyes (and yes, the phone-call will come later), frequently says she doesn’t understand the need to share everything with the world at large which so many of us do these days, be it through blogging or social media such as Facebook or Twitter. Is there an easy or obvious answer to that why? I can’t comment on why others share the most intimate details of their mundane lives, but I know why I do it. I have a story to tell and life experiences to share. When I started my blog I couldn’t anticipate how many people would read and follow my musings, but as I approach the 2,000th view of my blog, I am flattered that people have read something that has resonated with them. I know that some posts will be far more therapeutic for me than interesting for you, my reader, and I thank you that you’re prepared to bear with me and keep on reading.
The rest of today’s post is very much in that vein as life with M is proving difficult right now and I need to lie down and share from the psychiatrist’s couch.
Since M’s relapse back in April, we have been waiting for his system to settle and for things to improve and return us to where we had been at the start of the year. Our GOSH appointment in May had reassured us that his gut would repair and they spoke positively about the possibility of trialling one of his forbidden foods and even reducing his medication over the next 6 months.
Unfortunately, life hasn’t turned out that way and instead we are caught in a downward spiral and seem to be sinking fast. Our weekend at Legoland was a real step back to where we had been and much nearer the beginning of our journey then we were happy to be. As well as the return of multiple soiling accidents with chronic diarrhoea, M has suffered from stomach cramps, overwhelming tiredness, fluctuating appetite and blood in his stools. He is obviously struggling with his emotions and frustrations and is just generally out-of-sorts.
My conversation with our ever-wonderful dietician last week confirmed my inclination to speak to M’s gastro team as we really need to get him back on track. I was worried that we would be asked to remove something further from his already restricted diet, but the registrar told me that that wasn’t the way forward right now. Instead, we are introducing another medicine into the mix to try and suppress the reactions he’s experiencing and are being sent to our local hospital for an abdominal x-ray.
There are no easy answers to this problem for the time being. We don’t know why his small body has gone back into hyper-drive in response to the food allergies and we are feeling helpless in our inability to regain some semblance of control. If the x-ray is clear, which we’re expecting it to be, then the next logical step is another set of scopes, but that isn’t an easy decision to make because of M’s problems with anaesthetic. We also know that we still haven’t removed the possibility of moving M to the elemental diet from the table either and that seems like a daunting prospect.
The one thing I have learned from the wonderful families we met through FABED is that we’re not on our own and that however hard the next step might seem to us, there will be somebody else out there who has walked that path before us and will hold our hands along the way.
What’s more, a cup of tea or coffee and a chance to escape the EGID world, even for half an hour, is great therapy too.