I’ll get to the one year on in just a second. First thing’s first…
I am a wee bit late with this post (due to less reliable Wi-Fi than anticipated, I am even later to post it than I was to write it!) which I could easily attribute to my taking time out for a Winter Sunshine break, or I could put it down to how busy I was with work in the run-up to said holiday, or even to the general distraction of the Bah Humbug season.
Alternatively, I could be completely honest, and tell you I have been unsure how to write this particular post, so I have been putting off starting.
It’s rare for me to be stuck for something to say, I know. However, this is a matter with a lot of emotion attached. I suppose the same could be said for all my posts on here. It’s just that sometimes it is harder to find the right words, more tricky to know where to start and how to end, a little more challenging to decide exactly which way to approach an issue.
Tell It Like It Is
I guess the best thing for me to do, is just tell it like it is. So I will share my thoughts, and add another apology in advance for any disjointedness that may occur.
Exactly a year and seventeen days ago, on December 28th 2016, I faced one of my biggest fears and had an NG tube inserted. That tube, now affectionately known as Nelly, had a very important job to do. Its role was to take an entirely liquid diet directly to my stomach (without passing GO or collecting £200, sadly) in order to bring me back from the clutches of malnutrition, and build me up to a weight less dangerously low than 34kilos.
Why So Scary?
You would be forgiven for asking that, especially those of you who know some of the other things I have faced in my lifetime. What could possibly have been so frightening about a tiny piece of plastic going up my nose, down my throat and into my stomach?
Actually, I had multiple reasons for my fears. Believe it or not, none of them involved the process of Nelly’s arrival – although that turned out to be fairly grim in itself.
I was partly troubled by a sensory flashback I kept having. Eleven years ago, I had two life-saving surgeries within six months of one another. Both surgeries were to remove obstructions caused by scar tissue that had built up in my bowel.
Each of the two A and E admissions began with agonising pain and nausea so overwhelming it is hard to describe. Then, in both cases, the actual sickness followed. At the time of the first admission, even after two days of eating and drinking nothing, I was still vomiting so much that the nurses were instructed to insert a stomach drain.
There Was Only One Way In
A plastic tube was fed up my nose, down my throat and into my stomach – the same route Nelly would be taking. There was a bag attached at the outside end, which filled up obscenely fast with black bile coming directly from my stomach. This was designed to drain the toxic stuff away, therefore stopping me being sick.
It didn’t work.
About ninety minutes after the drain had been put in, as mum was helping me attempt to take a shower (one of the many joys when chronic illness hits hard is helplessness in the face of everyday tasks we would usually take for granted – like washing) I suddenly felt my stomach convulse in that all-too-familiar manner that says a tidal wave of sickness is on its way. I was so violently sick that the entire tube came out.
My fear was that my stomach might reject Nelly in the same way it had refused help from the drainage tube all those years ago. I can’t explain it in terms any more logical than that. All I can say, is that I was scared.
This one was the bigger, more dominant fear than the first. This came from a drive so powerful, I can’t remember a time when it wasn’t present.
People would see. Which meant people would know. Which meant I could no longer pretend that everything was okay.
How It Began
Although I was diagnosed with Crohn’s at the tender age of three (the same age I fell in love with performing) it wasn’t until I was ten that I had my first real flare up. Until then, I had known I had food allergies and bad eczema and various other issues with which I won’t bore you right now, but I didn’t know there was a name that would connect up all the dots.
Besides, what does a tot do with a label containing the word disease?
Yet, at ten, as the symptoms were developing thick and fast, mum explained in full. In my attempt to make sense of things, I asked her why G-d might have given me the disease. I wanted to know if I was being punished for something. Poor mum had to think fast to give me an answer that would satisfy my need.
‘No, my darling, you must never think that. You haven’t done anything to be punished for. Nothing at all. G-d gives challenges to the people He knows can deal with them.’
My Mission Was Sealed
From that moment on, I knew that I must be able to handle everything Crohn’s threw in my path. That’s all there was to it. Mum believed I was strong enough, so I was.
At some point, I learnt to convince the world (myself included) that I really was okay; even when I was so far from okay that I had lost sight of how it really felt. It became something I took on as a responsibility – I thought I needed to be alright to keep everyone else happy. People didn’t know how to handle it when I wasn’t okay, so I saw it as my duty to make things better for them. I also found it less of a personal affront, if I ignored the existence of my illness as much as I possibly could.
Spanner In The Works
Being an Actor always helped.
That said, with the tube going in and being on show for all the world to see, no amount of OSCAR-worthy renditions of ‘fine thanks’ would convince people that I was anything other than ill. Chronically so.
When there’s no other option, it’s remarkable what we have the capacity to handle. With support and encouragement from my amazing family and friends, and with Lovelyman holding my hand throughout, I endured the lead-up and the procedure.
I smiled as much as I could through my tears, and tried to ignore the alien that seemed to be sitting on my gag-reflex.
The way I saw it, when the tube went in, I had two options – I could either curl up, give up and lock myself away for the couple of months (so I thought!) I was going to be with tube. Or I could get out there and get on with life, accepting the fact that I would have to be more open about certain things from there on.
You know which of the two I plumped for.
You might wonder why I’m sharing all this one year on. What reason could there be for a post to mark Nelly’s first birthday? How is it significant that I have been with tube for a full year, instead of the couple of months I first anticipated?
One Year On – What’s Changed?
In the past year, a lot has changed. Obviously my physical health has improved no end. I have gained around six kilos, and my BMI now reflects that of a more healthy adult, instead of a ten year old girl. My days are no longer punctuated by huge doses of opiates at startlingly regular intervals. Now I am much more able to eat than I was before Nelly came into my life.
My mind-set has shifted a great deal too, though. I can actually say that it is something of a relief to be more honest and more real about how I am feeling.
Ever since I was a little girl, I vowed that one day I would do my level best to raise awareness and generate support for sufferers of Inflammatory Bowel Disease. I always wanted to do something to help reduce the stigma of such illnesses.
The arrival of Nelly was what prompted me to open up with this blog. It may only be a small step towards reducing the stigma, but it is a step all the same, and one that I am proud to be taking. So it seems fitting to write this post, one year on – as both a tribute to Nelly, and in recognition of the daily fight facing IBD patients.
It wasn’t until Nelly came along that I realised I had never fully accepted my Crohn’s Disease. That is to say, it was a part of me that I hated, rejected, dodged, avoided and neglected at all costs. Nelly has helped me tend to the needs of my disease more kindly.
People’s reactions to Nelly, or rather, their ability still to see me beyond the tube, have confirmed what I have always fought to prove – I am not defined by my disease. It is a part of me that I will never like, the most destructive part of me there is, but it will never be the whole me.
I genuinely don’t know for how much longer Nelly will be part of my life. There are currently no plans to separate us, although we are discussing relocation – that’s a story in itself which I will save for another post.
I don’t do regrets, because life is too short. However, if I did, my only one would be that nobody had brought Nelly into my life sooner. After almost a decade failing to respond to treatment, ticking along in a steady state of ill health, with the occasional hospital admission to wake me up to exactly how severely unwell I was, to think that after a year with Nelly, I am in a better state of health than I have ever been before, is quite incredible.
Been Through A Lot
Nelly and I have been all over the place together – Gran Canaria, Bulgaria, Tenerife, Edinburgh, London. With Nelly in tow, I have made a short film, almost finished writing a play, run the biggest project of my career to date and (just last month) succeeded in being appointed as a trainee LAMDA examiner. In other words, Nelly hasn’t stopped me doing anything.
If I’m really honest, Nelly has enabled me to do all these things.
Highs And Lows
Amidst all of that, we have only had one fall out this whole year. At exactly the two month mark, my stomach decided it didn’t want Nelly hanging around. Flashback fears came flooding back. Unfortunately, we were in a restaurant at the time, which was a little less than ideal. Thankfully, I had my phone in my back pocket, and had gone into the disabled toilet to throw up, instead of the ladies’ meaning that when the inevitable happened and I vomited poor Nelly into the toilet bowl, apart from the bit residing in my nose, I could SOS Lovelyman, and he was there in a flash. I had these hideous thoughts of having to walk through the restaurant like something out of a Sci-Fi Horror film snaking up out of my mouth.
Always cool in a crisis, Lovelyman came to the rescue, immediately knowing what to do, and how to rid me of the offending special effects. The very next morning, a replacement was inserted, causing far less discomfort or trauma than the first time around.
If we’re going to be pedantic about it, I suppose that makes this Nelly #2, but it’s all the same elephant to me. Whether I like it or not, I have come to accept that tube-feeding is part of my daily routine, and Nelly is a crucial piece in the big jigsaw puzzle of my present.
So perhaps you can join me in raising a glass to Nelly, and saying ‘happy first birthday’ to the elephant in my room.