Seventeen years ago I sat on the stairs, in my house, while my (then) wife and two children sat in the car waiting for me. I was planning how to crash the car safely - you know, causing enough damage to the car that it would be incapable to make the journey, but not enough damage that anyone in the vehicle (or outside) would be injured.
Sixteen years ago I started a course of beta-blockers. This, after a certain amount of research, was decided as the best way to deal with my problem.
Fifteen years ago I quit taking beta-blockers because they were not having the desired effect.
Twelve years ago, in order to prepare myself for an operation to remove four wisdom teeth, I starved myself for three days prior to the day of my admittance to hospital. I drank nothing but water and ate three slices of bread per day. It was a plan, just not a very successful one.
Ten years ago I travelled abroad for the first time in eighteen years. I prepared for the event by starving and taking a cocktail of drugs - anti-diarrhoea tablets and over the counter sleep aids.
Eight years ago I attended six sessions of hypnotherapy.
Two and a half years ago I left England for Mexico and received an email from my brother that mentioned that when most people run away from home, they get as far as the end of the drive, as an agoraphobic he had suggested looking for me in the wardrobe - how the fuck did I get to Mexico?
Since the age of 25 (twenty-two years ago) I have lived in fear of going out, leaving my house, eating anywhere, visiting anyone, partaking in a life outside my front door. This is a fear I have lived with every second of the day. It is a fear that I have had to face constantly, every single day of my life. And I live with it. I have, in the last twenty-two years, missed under 15 days of work. I have attended all of my children's school functions. I have gone to parties. I have been to the cinema. I have eaten in restaurants. I have attended concerts. I have slept over-night in other people's house. I have gone on holiday. I have gone shopping. All of these things have caused me a certain amount of fear. All of these things have been a chore. The best moment, of any event, is the moment when I get home and close the door.
I have often said that my biggest fears alternate between: showering in a prison; coming to find two paddles on my chest and someone shouting the word, "Clear!" I have one bigger fear. One fear that I don't share with anyone because it is TMI. It is my Room 101. The thing I fear the most is not being able to find a toilet in time. The thing I fear the most is shitting myself.
Wow, that was slightly easier to type today than I ever thought it would be. Obviously, as if you need me to tell you, this is the moment you can stop reading because, unfortunately (for you) I am going to continue. This is my therapy.
In 1992 a doctor finally mentioned Irritable Bowel Syndrome (IBS) - and that was all she did. Her understanding of the problem was about as good as mine. The feeling was that the problem was mental rather than physical. I was either "stressed" or I was caught in a "downward spiral" or it was a combination of the two. Basically the feeling was that stress was upsetting my stomach; because my stomach was upset I would start to stress more; this would upset my stomach more; I would stress more; this would upset my stomach more; etc. The solutions given to me all involved dealing with the mental problem - beta blockers, hypnotherapy, mental techniques. These didn't work. After six months on beta blockers I had a discussion/argument with my doctor because I felt I was being given placebos. My problem actually seemed to worsen! The hypnotherapy seemed to centre more on my father's death even though I had been suffering long before his death. The mental techniques just failed miserably. I was left on my own, to deal with whatever the problem was by myself. This I did by using a method of starvation, anti-diarrhoea tablets, and locking myself in my house.
I kept my problem a secret from friends. I would tell people I wasn't hungry, wasn't feeling good, had a "bit of a gippy tummy" so that I didn't have to eat in public. My family decided to live with the problem by ignoring me, leaving me to "get on with it". Most plans were made around me, they would do stuff and I would tag along, if I could. If I went anywhere I would first have to research where the nearest toilet was. I would carry my own supply of toilet paper. There would be a change of clothes in the car. And, whenever I went to the toilet, I would always put the seat and lid down (so that the person after me wouldn't know if I had sat or stood). This was my secret. My problem.
I wasn't raised to talk about going to the toilet, it was not a thing that was ever discussed. At boarding school, going to the toilet was seen as a sign of weakness. Once you were locked into a stall you were a target. The door would be kicked while you were in there, things would be thrown into the stall (including burning toilet rolls), verbal abuse would be hurled - it was all good fun. Visiting the toilet became a military operation, a secret event, done at a time when the toilet block was empty (and would remain empty for your visit), and no-one would know. This was a behaviour that I would carry on for pretty much the rest of my life. You know how people sometimes get up and announce they are going to the toilet? Most people don't notice that I've gone. I leave and return like a ninja!
The main problem with IBS is that I need the toilet now! I dream of being one of those people who say that they need the toilet and then sit around talking for another half an hour (oh, and another thing I do - I know exactly who goes to the toilet and when. It means that I can gauge when the toilet is free. Yesterday we went out for a meal with a friend. We ate in a restaurant with only a few people in it. However, I can tell you that three other people in the restaurant used the men's toilet. I keep a mental record if there is someone in there or not. Damn, I scare myself sometimes.). When my stomach "rolls" I know I have about thirty seconds before my colon spasms and I evacuate my bowels (sorry). And my stomach "rolls" whenever, where ever it feels like.
The beauty of my relationship with Maria is that I told her about this problem. Many people worry about relationships that start on the t'internet - how do you know that he isn't an axe murderer? Well, the fact is, as I thought I would never meet Maria, I started with my faults. I didn't hide any secrets. And this was the biggest secret. She knew more about my problem, how I thought, how I behaved, than any other person. Of course, with 20/20 hindsight, rather than scaring her away, my openness, my willingness to open myself up to her, meant that she knew everything about me and (yet) she still loved me. This openness means that our relationship has no secrets, there is nothing to surprise, I am the man she fell in love with, and I am still that man.
Maria has been (is) wonderful. She has shown a total understanding. When I say "my stomach has just rolled", she drops everything and joins me in my quest to find a toilet. When we arrive at anywhere new, she often locates the toilets first and will whisper their location to me (often when we arrive somewhere her first words are "where are the toilets?" - she does the research for me, knowing that I prefer the ninja offence, she takes the (in my mind) embarrassment for me. I love her.). And life has carried on, here in Mexico. Those who have known my secret can't believe that I can live (and eat) in Mexico. Most can't actually get their head around the fact that I left the country, left my own house. Hell, to tell the truth, I can't believe the life I lead. I go to the cinema! I go to restaurants! I queue at the border! I live in a foreign fucking country! [Although it is (maybe) interesting to note that the first three phrases I learnt in Spanish are: Te amo tanto; Siempre y por siempre; Dónde esta el baño.] We live with my problem.
Last week, after having been bombarded by adverts, we ended up buying a bucket of KFC sauceless hot wings. They were very tasty, very enjoyable, and they tore my stomach apart. I spent, approximately, six hours in the toilet. Sometimes getting out of the room for a couple of minutes, never getting further than 5m away from the room. The next morning (because I do) I went to work, leaving Maria alone at home, alone with the t'internet.
And suddenly my whole world changed.
Maria typed IBS into the search engine.
This weekend I read a book, Eating For IBS, and cried. We bought the book mainly because it is a recipe book. It appears It is a fact that IBS is not a psychological problem, it is a physical problem. There is no possible way to control the attacks mentally, they have to be controlled by your food intake. Certain foods trigger the attacks, those foods have to be cut totally out of your diet. It is interesting to note (well, interesting to me) that, with no information, no real knowledge of what I was doing, I have already cut many things out of my diet already. Somewhere, at the back of my mind, I had been making a mental check-list of problem foods and avoiding them. In many cases I have been living fairly close to a correct diet. Unfortunately (for me) not close enough. However, subconsciously, I have eliminated many things from my diet without knowing why. For example, I don't eat popcorn at the cinema. Did I know about soluble/insoluble fibre? Nope. In fact I'm not sure I totally get it now. But, somehow I had worked out that popcorn upset me, so I didn't eat it. I have already eliminated milk from my diet, electing to go lactose free voluntarily. Of course, because I didn't know, I still have cheese. These last two weeks have been a journey into sensible eating, or at least eating knowing I have a problem. We are still juggling certain food items, trying to work out what inspired the one attack I have had in two weeks. We think we've nailed it, it might be the vitamin supplement drink that I had that day. We are just waiting for a clear day when I can take it again and see if it sets me off. But I am we are working at the problem. Learning to eat often. Yes, eat often! It appears that my method of starvation was totally the wrong way to go. Instead I should have been nibbling all day, so that my stomach isn't "shocked" when I finally take in food.
But I cried. There are fifteen or so pages at the front of the book. In those pages the author talks about her life, the way of life I should be leading, what I should be doing. One of the things she suggests demands that I do is to announce to the world that I suffer from IBS - this is why (if you are still here) I am writing this. As she points out, most people are are actually very concerned. Tell them you have a medical problem based around diet and they understand - and if they don't understand, fuck 'em (not quite her words). I have a problem, certain foods are poisonous to my system. I shouldn't take these foods in. It doesn't matter how much time and effort someone has put into cooking food or if it is their favourite restaurant, if that food is going to trigger an attack - I shouldn't eat it. And this makes sense. I realise that, to you, it makes obvious sense but it has taken until now for this to make sense to me.
And that is because I thought I was alone. I sat and read and saw my world described in those pages. Does it fully tell you what is wrong in my world? No. But in those pages I saw the life I led, I got what she said. I don't think you, or anyone who suffers from IBS, will ever understand how my mind works. I have an illness. It isn't my fault. I am not mentally fucked. I have a physical disability and I am learning to live with it.
Except, I am not alone. The last three years I haven't been living this life alone. Maria has been here, with me, living this life. She has done the research. She is doing the cooking. She is thinking for me. Supporting me and helping me. Thank you. Oh, and thank you if you have read this far.
Hi, my name is Will and I have IBS.
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