It’s just like riding a bicycle is a phrase used to determine something that is almost impossible to forget once it has been learnt. As an expression, it is all well and good. Unless, of course, you never had the courage to learn to ride a bike in the first place like my mum. I suppose it also doesn’t work so well for those like my sister, Shelley, whose coordination was so poor that it took twice as long as everyone else in the class, for her to pass the cycling proficiency test. Imagine you find yourself in Beijing, home to nine million bicycles, and you simply can’t find which damn two-wheeler is yours to ride? There would be nothing easy about that scenario.
What if, like me, you used to be an avid rider, but the last time was over 20 years ago on a Raleigh racer that would now be described as vintage. As much as I love sitting on the back of the motorbike, if I’m really honest, the thought of going out on a pedal-bike on anything resembling an actual road, terrifies me these days. Still, as sayings go, it is fairly well-used, and I’ve certainly heard it said several times in my life. I’m sure everyone has. It is just like riding a bicycle implies something should come as naturally as breathing.
As you all know, my elephant and I have been pals for eleven weeks. I have become so accustomed to the sensation of the tube in my nose, that I sometimes get a shock when I see my reflection in the mirror, and am reminded what it looks like. It’s something of a rarity for me to show myself compassion, but in the moments that I allow myself praise, I marvel at how well I have dealt with things. I have got on with life as I now know it, embracing the routines and regimes I have to follow to ensure the tube stays clean, in place, securely taped and settled in my stomach. What would have been the point in fighting it or moping? It would have only made it harder to handle. Instead, I have done everything I normally would.
After almost nine weeks with the tube, on a purely liquid diet, the dietician contacted me to say that she wanted to see me to ‘discuss food reintroduction.’ I almost jumped for joy. Then I stopped to think about it, and I realised I was scared. How could I be scared of food? Why would I be scared of eating? The symptom reduction I had experienced from being on a nil-solid diet, had been remarkable. In the first week, I went from hourly doses of morphine for large portions of most days, to a single day where a couple of shots were required. That’s a huge improvement by anyone’s standards, and I wasn’t ready yet to revert to how things were before. What if, when I start eating again, the pain comes flooding back? What if I start losing weight again? What if, what if, what if…?
When I went to see the dietician, she was as lovely as she’s been throughout treatment, which always helps. She explained why we had to consider bringing food back into my routine at that particular point: because we can’t risk that my body starts to register all food as the enemy. I have enough problems encouraging my body to accept and digest the things I feed it, without giving it chance to develop resistance to all things edible.
One advantage of the liquid diet, is that it obviously works to keep my weight roughly stable. Over these eleven weeks, I have managed to gain a whole kilo. A single kilo in almost three months is not much to sing and dance about, but at least I haven’t lost any more of my body weight. There’s always a silver lining, if you look hard enough to find it.
So, food reintroduction. It all sounded very complicated, and everything had to be recorded in detail, including any symptoms I might experience. It was obviously not simply a case of going off and pigging out on all the things I’d missed. I would have to start very small, and choose foods from a very limited list. Of course, I had to keep my liquid feed going, to supplement whatever calorie deficit there would be from the limited grazing I would be likely to manage in the first couple of weeks. All of a sudden, it was a whole lot less exciting than I’d anticipated. That said, progress is progress.
You’re probably wondering where bicycles come into the equation, aren’t you? The reason the phrase sprang to mind, is that I honestly had no idea how hard it was going to be to do something I had thought of as second nature. I don’t mean I forgot the mechanics of eating; of course I knew what I had to do. I just wasn’t prepared for how difficult and unnatural it was all going to seem.
I was just supposed to start small – something at every mealtime, ideally – a soya yogurt at breakfast time if I could manage it. In fact, as many things containing soya milk as I could cope with throughout the day, as they are fairly good for calories. Nothing could have readied me for how much of a struggle it would be to force anything more than my breakfast yogurt down, while still enduring my full dose of feed. After a couple of days, during which it became clear that something at every meal would not be possible with seven cartons of feed, I followed instructions to reduce the feed. As long as I didn’t go below a certain number, I would still be getting enough calories for maintenance. I had to promise that on bad days (food-wise) I would increase the feed dosage again, hopefully ensuring that my weight would start moving in the right direction.
Two weeks in, and I am finally starting to enjoy certain foods. The limitations and restrictions have been bartered down, to allow me to make a better go of weight gain. I found it hard to force myself to eat enough rice cakes with jam to make a significant contribution to my calorie count. Spelt toast with sinful melted margarine or lovely indulgent peanut butter and marmite (I’m a lover of both – deal with it!) packs a much more calorific punch. I have been 100% committed since day 1, to eating a bowlful of vegan ice cream every single night. I know there are people cursing me right now – to so many, it would be a dream come true to be instructed to eat ice cream every night. For me, though, it is hard work. Lovelyman and I are really hoping that at this coming week’s weigh-in, I will actually have started piling on noticeable pounds, to make the return of some of the pain worthwhile.
It often does hurt after I eat, I sometimes feel too sick to leave my feed running continuously, meaning it takes hours more than it should, and my consultant has just dropped the bombshell that we might be looking at long-term supplementation via tube feed, so it certainly hasn’t been plain sailing, nor are things about to get much easier.
However, it is nice to get up in the morning and be able to sit at the table together for breakfast again. I am enjoying being able to taste the yummy things Lovelyman keeps baking for me. It is great to be in the supermarket and pick things up for myself. Strange as it seems, that was something I struggled with, as it reminded me just how far away from normality I was living.
Those of you who know me, or have been following this blog, will know that I don’t covet attention or pity. I write about these things to provoke thought and raise awareness. So when you serve up your breakfast, choose lunch on the move or feast on three courses at the end of your working day, just remember how lucky you are. Not everyone can enjoy these simple pleasures quite as easily as riding a bicycle.