Apparently I have a “significant vitamin b12 deficiency.”
In short, my GP says I need two b12 injections a week because my body is “not absorbing properly” and it is making me unwell. Before I can start the injections however, I need to have a Gastroscopy at the hospital, because Dr. Gabi wants to rule out a Gastrointestinal Disorder or a bleed.
Not only do I have Crohn’s disease and Ulcerative Colitis in my immediate family, it is also well documented that Gastrointestinal Disorders are “among the most common medical conditions associated with Autism.” So, with ‘encouragement’ from my friend Lesley, I book the Gastroscopy.
During the two-week build-up to my appointment, I find myself relentlessly, foolishly YouTubing Gastroscopies and watching them back-to-back online. I view so many that I could probably perform the procedure myself if you wanted me to! Surgery has always been one of my ‘special interests’ (exacerbated by my great Grey’s Anatomy binge of 2016) but I have never had any kind of procedure in hospital before myself.
Something like fright became caught in my chest over the next few days, and was taking my breath.
I manage to identify that I am not frightened of having the Gastroscopy at all: a Gastroscopy is a simple, routine procedure. The explanation for my anxiety is sensory based and a fear of everything the internet ‘can’t’ tell me.
However daring I want to be, if my brain is receiving too much sensory information too quickly, I experience a ‘sensory overload.’ This can manifest as an anxiety attack, physical tummy and leg pain, sickness or a complete ‘shut down.’ Autism amplifies everything: Pleasure. Pain. Empathy. Detail. Colour. Sound. Everyone on the spectrum is differently-exhausted, but ‘sensory overload’ for me happens when I mask my condition too much in order to ‘fit-in’ and ‘keep-up.’
The fear of this happening in the hospital is following me everywhere I go.
So my friend Lesley phoned the Endoscopy department at the Royal South Hants hospital and asked them if she and I could visit the hospital before the date of my Gastroscopy. She explained to the nurse that I have Autism and sensory processing difficulties and that it would be helpful if I could come and see the nurses, the waiting room, the procedure room, the recovery ward and all of the equipment in advance of the procedure, so that I could visualise everything and know exactly what to expect.
I was stunned at Lesley: for having this idea and then for making it happen for me. There is no greater friend than one who attempts to experience the world through your eyes and make things better for you.
The NHS nurse that Lesley spoke to was extraordinarily understanding, and she organised a date for us to have a tour of the department led by a nurse from the Endoscopy team.
We arrive at the hospital for the tour, and I am an owl, observing and memorising.
I memorise the walk from the car-park, through the main doors, down the corridor, round the corner, to the lifts. Up in the lifts we go to the first floor where you can’t get lost because the signs are too clear. The waiting room looks like a normal waiting room: there are chairs around the sides, the TV is on but the sound is off. There are magazines on tables, a long window looking out to the hospital-roof and a few posters on the wall. One of the posters tells you what-to-drink and what-not-to-drink if you want a healthy bladder. A man comes to greet us: he is a nurse and his name is Rob Pattinson.
He talks mainly to Lesley but that is okay because I am concentrating on remembering what things look and sound like. First, he shows me a little office where I will be asked to sign some forms and have my blood pressure taken; then he takes me to a room where I will wait and be cannulated; after that, we walk to the procedure room.
There is no bed there today, but I can stand where the bed will be.
He tells me that I will lie on my left-hand-side and that means I will be able to see a little trolley of medical things and four posters on the wall that are too far away to read. He tells me that the doctor will be called Dr. Laing and that he has been doing this procedure at least “eight times a day” for “longer than I have been alive.” He tells me that Dr. Laing will probably have two or three nurses with him: one will be monitoring my breathing and heartbeat, and the others will be taking notes or standing by my head.
I didn’t have any further questions. Everything I wanted to know had been addressed in detail. I go home content, confident, (secretly looking forward to it) and able to visualise what was going to be happening to me.
My Gastroscopy is at midday today and I haven’t eaten or had a drink since 5pm yesterday. I know that the doctor is going to inflate my stomach with air so that he can investigate it properly. I know the way to the department so I don’t need to consider the worry of being lost and having to ask for help. I recognise the nurses on the desk and they are expecting me: they tell me to sit in the waiting room (like they said they would.) The TV still has no sound and the poster is still telling me what to drink to maintain a healthy bladder. The nurse I met at the pre-visit, Rob Pattinson, comes through the door and calls the name “Claire,” but it is a different Claire, and that makes me confused, but he recognises me and says “you’re next.”
Things begin to happen fast.
Dr. Laing is there. He looks different to how I had imagined. He is asking me questions as a nurse clips an oxygen tube into my nose and around my ears. My whole body is shaking. Dr Laing is spraying numbing spray into my mouth. The internet told me that the spray is disgusting but I don’t think it’s that bad: it’s a bit like bananas and now my throat is definitely numb. Another nurse is injecting sedative into my arm and helping me to lay down onto my left-hand-side as the doctor tells me to bite on a blue mouth-guard. I think I am sedated before my head hits the pillow, although I am vaguely aware of a metal bowl by my mouth.
I remember holding a nurses hand.
Next thing, I was waking up in the recovery room and Lesley was there. I was grateful to have a friend caring enough to come up with a way, not only to enable me to succeed, but to succeed confidently and to be there when I woke up.
I was grateful to the accommodating NHS staff at the hospital for wanting this for me too, and for taking that bit of extra time to make sure I could be familiar with the routine and know what to expect.
I got thinking about thinking-around-corners, and realised that there are many more things that we can all succeed at if we go about them differently, creatively and with the right support.
No matter who you are, no matter what the barrier, things are ALWAYS possible.