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At Least That Way I Will Know…

In my line of work, it would be impossible for me to be risk-averse. Whichever professional hat I wear – Actor, Writer, Creative Practitioner, even Tutor – as a self-employed Artist, I would be setting myself up for failure and disappointment if I expected permanently calm waters.

So, fortunately for me, I have come to enjoy the gentle bobbing of the waves. Occasionally, the seas might become more choppy than I would like, but I have learnt to weather each storm, hoping I come out the other side with a new insight or a fresh perspective on something.

In fact, my mantra has always been: at least that way, I will know. For me, the thought of looking back and wondering: what if? is too much to bear. Life is too short to have regrets, so I do everything in my power to ensure that it will never come to that.

Choppy Waters

It would be fair to say, I have endured some relatively choppy waters lately. In fact, I am still riding one or two storms, even as I type. But with each one, I find a different pocket of strength. Sometimes, even after all these years, and all these tempests, I surprise myself by realising I am stronger than I think.

Which Brings Us To Today…

This morning marks some pretty enormous changes in the life of this tiny Crohn’s Warrior. It is the first time in sixteen months, that I haven’t started the day by checking the PH levels in my stomach. Nor have I then spent forty minutes syringe-feeding myself before kicking off my day. For the first time in sixteen months, I have been able to wash my face without tugging on Nelly, I haven’t needed to rearrange my tube and tape combination with care, I haven’t been forced to neglect my left cheek when moisturising and applying makeup…

By now, you may have caught on.

Today marks the first day in exactly sixteen months and three days, that I have woken up without an elephant.

Technically that isn’t true. I suppose my elephant – my Nelly – will always be with me. For some people, my IBD will always be a subject to avoid and hide from. The last sixteen months have taught me, that even when Nelly is visible, up-front and centre, some people will still pretend they can’t see him.

But therein lies the change. This morning, for the first time in sixteen months and three days, my Nelly is not the centre of attention. I am no longer wearing Nelly on my face.

Why Now?

You may remember a post before New Year, in which I talked about my dietician’s advice not to rock the boat by trying life without a tube. She and my consultant were both so keenly aware of how long it had taken to bring me back to a point of nutritional stability, and for how much of my life I had probably been malnourished, that I could understand their reluctance to make any changes.

That said, three postponed attempts to rehouse Nelly in a more concealed spot beneath my clothes, have left me with a great deal of extra thinking time.

A Big Decision

Although a PEG would be a much more discreet option for me, it is still a surgical procedure. However minor, an op is still an op. In my mind, that means I have to be certain that it is absolutely necessary.

For me, the decision to have a rubber tube poked through my abdominal wall and into my stomach – regardless of how easy it may be to take out in the future, or how tiny the scar would be – is not one I take lightly. The idea of heading down that road simply so we can avoid rocking the boat just doesn’t sit right.

So That Brings Us Here

After a lot of careful consideration, and several conversations with my nearest and dearest, I have decided that the only way to know for certain whether I can stand without crutches, is to take the crutches away completely.

I have been able to eat so much more lately, and my liquid feed has been used to supplement my calorific intake, rather than replace it. I am confident that if I don’t fill up on grapefruit flavoured syrupy liquid first thing every morning, I will be making space for hearty breakfasts and extra morning snacking.

It is true that I will most likely have an increase in pain along the way. In truth, my symptoms have been pretty active since December anyway, so I can’t imagine it will be too noticeable a change.

Anyway, the point is, that if it becomes too much to manage, or my weight starts to drop again, we know that tube-feeding works for me, wherever the tube is housed.

Medical Support

Of course, I have talked it through at length with my wonderful dietician, who understands my point of view on the matter. She isn’t 100% sure that my consultant will be entirely happy about the choice, but she supports me in my thinking.

She also knows me well enough to trust that I wouldn’t do anything to jeopardise the progress I have made thus far. In that sense, she has given me her thumbs-up to go ahead and take off the arm bands.

Sink Or Swim

I imagine you’re wondering how it felt when I took it out? Well, late last night, when I arrived home from teaching, and Lovelyman had returned from his Monday evening card game, we lined the bathroom sink with a carrier bag, prepared a large drink of squash for afterwards, and set the video on my phone to record.

Then, as instructed by my dietician, I rolled my sleeves up, peeled the tape off my cheek, tipped my head forwards…and pulled.

It would be impossible to describe the sensation as the tube came up (or the taste), as anything other than peculiar. Actually, that’s not true. I could easily describe the taste as being vile. Imagine the taste that settles in your mouth right after you’ve been sick. Enough said.

The tube looked every bit as grim as you would envisage it looking, after living in my stomach for almost a year and a half. In fact, it looked bad enough that wordpress won’t allow me to upload a photo of it! Yet it was out in seconds.

Surprisingly emotional

I was most surprised by the fact that I cried. When I looked in the mirror, and realised that all I could see was myself, I was a little overwhelmed. I have become so accustomed to seeing my illness, every time I glance at my reflection, that to see me without the label was just a bit much. I suppose, in some ways, I had resigned myself to the fact that Nelly would always enter a room half a stride ahead of me, taking up more space (in some people’s eyes) than I could ever hope to inhabit. So the relief when that stopped being true…it was huge.

What followed the tears was a sense of euphoria. It was a little bit like a drug-induced high. I was excited to blow my nose without the alien in the way. I was ecstatic to lay my head on my pillow without first having to rearrange where the tube was positioned. As for taking off my makeup and moisturising my face!

All in all, it was a very emotional nighttime task.

The Come-down

Last night’s high was a rarity in being a high with no come-down to follow. In fact, the buzz continues.

I never thought I would enjoy looking at my own reflection so much. There is a slight mark from where the tube has rested against my skin for so many months, but that will fade. And if it doesn’t, who really cares?

Managing Expectations

The one thing I absolutely must do, is remain realistic with my expectations. I have to keep an extremely close eye on my weight, something I have become well-versed in doing, and take action if there is any alarming shift.

It isn’t possible to know for sure, that I will be fine without the tube, because there is no such thing as absolute certainty. Particularly where health is concerned.

I understand that, one day, we may decide the safest option to ensure I stay as well as possible, is to have a tube long-term. If that is the case, so be it. But it is that lack of concrete certainty that makes me so positive I’m doing the right thing. By throwing away the crutches, deflating the arm bands, tugging out the tube, I feel I can say with certainty, that at least I will know. 

So maybe sometimes, that lack of sureness means you need to rock the boat, just to see what’s meant to survive the storm.

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