Last month marked some monumental changes for me. I was finally given the green light to stand on my own two feet from a nutritional point of view. Nelly, the NG tube that brought me back from the brink almost a year and a half ago, was pulled out, meaning I am no longer forced to wear my illness on my face.
Of course, that doesn’t mean the illness isn’t there. Or that I don’t still have plenty to say about living creatively with Inflammatory Bowel Disease.
I should possibly start with an explanation. And perhaps an apology. I seem to do both rather a lot at the moment. On here at any rate.
So, my lengthy quiet phase has been brought on by rather turbulent times for me personally. Said bumps in the road have left me a little unsure how to approach my blog. You see, I promised at the outset that this would always be a warts and all account. I said I would paint a totally honest picture of my life with Crohn’s, because I genuinely believe that is the only way for people to understand what it really means to live with chronic illness.
Making the decision to go public about the condition I’d spent my life hiding, was a pretty big deal for me. Despite being an actor, and therefore being no stranger to public scrutiny, when it comes to personal matters, I am actually a very private person; there are some things I simply don’t feel ready to offer up for breakfast reading.
The conundrum for me is in how to remain honest, and true to my initial aim, without feeling more exposed than I really want to. It’s been a fine line to walk ever since I started this blog, but it seems more difficult right now, than it ever has before.
I think I will have to ask you to accept that there may be some gaps – some things I don’t share, but isn’t it my right to choose? As a blogger, I feel an immense pressure to deliver a certain product to the people who support me by reading my posts.
I realise that it is a pressure I put on myself, and I am hereby attempting to remove it.
Well, that’s my excuses and explanations out of the way. So, I’d like to let you in on how stressful my first six weeks without Nelly have been. Whilst I love the fact that, to the rest of the world, I appear normal once again, I am still enjoying the novelty of being able to apply makeup to both cheeks and I am certainly not missing that awful feeling of tape on my face in the sweltering heat, in some ways I feel as though I have lost a safety net.
Now that the tube is out, I feel even more intense pressure to maintain my weight. The awareness that, if the tube has to go back in, it will probably be permanent, makes me more determined than ever, to walk without crutches.
Like so many chronic conditions, IBD can be exacerbated by stress. Having gone through an incredibly stressful two months, including a big move and some pretty huge decisions, I have struggled to sustain the good eating habits I had been working on for so long. My pain has increased in both intensity and frequency, making me less inclined to eat, and resulting in an often non-existent appetite.
That has brought with it the fear that I mustn’t let my weight drop. For almost 34 years, I have lived with the knowledge that my Crohn’s can flare up at any point. I have never lived in fear of that happening, though. I have just known not to take the good days or weeks for granted, because I can never predict how long they will last. All of a sudden, I seem to have a little cloud hovering over me at all times. It is the cloud of fear. The stakes suddenly seem to be so much higher than they’ve ever been before, with so much resting on my ability to keep my weight stable.
It may sound stupid, but never being able to leave the house without ensuring my bag is laden with high calorie, easy-to-eat snack foods is actually quite a burden. Reaching the end of a long day like today, where my pain has been fairly horrific, but knowing I have to make myself eat a full dinner in order to ensure I meet my calorie count, is not much fun. Nor are the hours of pain that follow, keeping me up when the rest of the world is sleeping.
I don’t want this to sound like I am moaning – I have certainly never been one to complain about the hand I was dealt, even when I think it is utterly #@it. I am simply trying to continue to paint that honest picture for those who want to see it. In some ways, now that Nelly has gone, it almost becomes more important to do so.
I have lost count of the number of times I have been told, in recent weeks, how well I look, and asked in a way which only leaves room for a ‘yes’ response, if I am ‘better now.’
And of course, in relative terms, I am. How I feel now is a world away from how I felt a year ago; for that, I am truly grateful. That said, people aren’t asking: ‘how are you in comparison to last year?’ People simply ask: ‘how are you?’ then follow it with an optimistic: ‘better…?’
Without the tube to hide behind, I have reverted to my default responses of: ‘fine thanks’ or ‘doing really well’ in place of the more honest answers relating to my day-to-day reality.
In truth, the knock-on effects of the past few months have been pretty bad. I used to struggle to admit that there was a link between my emotional and my physical well-being. Now, I don’t shy away from that fact. I would even go so far as to say that I embrace it as simple common sense.
Although anyone working with me, studying with me, passing me on the street would have no idea, my fatigue has been unbearable lately. It’s a good thing I’m such an early riser (or non-sleeper!) as most mornings, I have to allow twice as long to get ready as I would really need. This is simply so I can allow myself to sit down and have a rest every few minutes. Today, I had to ask my mum to take my rubbish out when she popped in for a cuppa, as I didn’t have the energy to carry the bag round to the back of the building, or lift the lid on the enormous communal dustbins.
At times like this, I feel utterly pathetic. It frustrates me that things I should find so simple, absolute knock me for six. But I am trying to remember that, if I were someone else telling me all this, I would have all the compassion in the world for that person. If I could find a fraction of that empathy for myself, I may be able to learn to be a little bit kinder to me. After all, if I can go easier on me and beat myself up a little less, maybe my worry and stress levels would come down. Who knows how much better that could make me feel…
So What’s The Moral?
I’m really not sure there is one. Except that it’s useful to remind ourselves that not all disabilities are visible. For 9 years before Nelly went in, I had been failing to respond to treatment. That means for 9 years, I had yo-yoed between very ill, very, very ill, desperately ill and horrendously ill. Yet it wasn’t until Nelly went in, that people noticed I looked ill at all.
I will never be the person who grumbles or tells the world and his wife every grim detail of how I’m feeling on a daily basis. However, I may find it a little easier to acknowledge the difficulties I often face, if more people gave me permission to answer outside of the bounds of what they wish to be true for me. While I know that wish is born out of kindness and concern, for me, it adds an extra layer of pressure to my responses. I can’t bear the thought of disappointing such caring people, by telling them that ‘today I feel like crap!’
I suppose it helps to be more honest with myself – sometimes, it takes everything I have just to exist. There it is. The reality of life with Crohn’s in a post-Nelly universe. It’s good, bad, ugly and scary. And, most of the time, it’s downright exhausting. But it’s my life – and right now, I am owning it without a crutch.