'You are not your bowel cancer....You are not a unique and beautiful snowflake.'

That rant summarises the necessary paradox of attitude that gets me through each day. Please don't think, ever that the pain has gone away, that I don't wake up in the mornings feeling like a bus has hit me any more, that I don't end the day stiff as a board and shuffling like an old lady. It does still happen. Not the way it used to, but it does still happen.

You have to get over this idea of the illness as a thing that has afflicted you like someone putting a plastic bag over your head. This is not a bug, not like a cold. This isn't a broken limb that will heal stronger than before with little tell-tale marks that the osteoarchaeologists of the future will be able to point at, cooing.

This is your life. This is part of who you are.

But it isn't all of what you are.

'You are not your bowel cancer.'

The easiest trap in the world is the one that lets you define your life by your disease. You are not a person who happens to have some health related problem, you are an FMS-sufferer who's name is Joe Bloggs. You are patient number KY987635. Your name and place of birth become no more than statistics used to identify your medical records.

NO!

'You are not your bowel cancer.'

That's not you. That's what you are made by the Western medical system. The Western medical system views you, generally, as an engineering project, a bag of biochemistry with points of failure. When you get ill, they look for the point of failure and attempt to fix it. If they can't identify the point of failure, they call it a 'syndrome' and work on the symptoms. Working on the symptoms is largely like scrubbing the rust off your car without knowing to repaint it afterwards, or spraying air freshener in your house when the cat has left you a defecatory present without knowing where to find the offending blob of crap.

It doesn't feel satisfactory.

On the other hand, it's also a mistake to think that unless you find the one point source of all that is ill with you, then you will never be able to sort it out and you might as well give up, slump in a corner of your bedroom, put a towel over your head and wait for the mould to kill you. That won't help. It doesn't even feel like it's helping. All it does is make you feel even more miserable and provokes a cycle of depression that will land you on some sort of medication.

Accept that you will get depressed. Accept that this is not the end of the world. Accept that you will not be depressed all the time. You aren't fundamentally miserable, you have a problem.

You don't actually need one point source to deal with that problem. All you need to do is look at your life honestly and decide where improvements could be made, both in yourself and your surroundings.

The paradox arises from 'you are not a unique and beautiful snowflake.'

Well, he's right. You're not. You're not the only one in the world who has suffered and ranted and raved and been at the mercy of doctors who seem to be more interested in how many ticks they can put in boxes and which label to stamp on your forehead than in helping you. On the other hand, you are unique. What works for you might not necessarily work for anyone else, and what works for other people might not necessarily work for you.

This is your life. Your health. It's up to you to decide what is important to you, and it's up to you to sort yourself out. Even if you hand over all decisions to the medics, even if you simply do what you are told, at the end of the day the doctors cannot force you to take medication or follow their protocol, so even that is in your hands. It is up to you whether you do everything they say, it is up to you whether or not you decide that it's all claptrap and go talk to the crystal singing dolphins from the Pleides and get your DNA mathematically re-arranged (like that's any better). Your health, your life - it's up to you to deal with it in whatever way you see fit.

But you have to deal with it. If you want to have some sort of life you can't just sit in a corner with a bucket over your head and wait for it to get better by itself, because it won't.

My suggestion is this:

Make a list of all thie things in your life that you don't like or that are bad for you. It doesn't matter whether they seem related to your illness or not. It really isn't important. If there is something structurally or biochemically wrong with you then you may have to turn to physical remedies, but the mind, body and spirit are not discrete entities. One affects the other. Removing as many of the negative things in your life as you can will ease some of the strain on the system as a whole.

Now, from that list, make another list of the things you can change. It could be that you eat too much fatty food, or you don't get much exercise, or even that you live somewhere that makes you really unhappy. The list doesn't have to be made up solely of things that you can change immediately, just things you can change. Be ambitious. Don't like where you live? It's not physically impossible to move, it's just hard.

Now, from that second list, make a list of things you can change immediately. Unless you are stinking, filthy rich this will probably be quite a small list. The next step is to decide what it is about those things you would like to change and change them. Do it. You might want to do it over the course of a week or two or even a month, but each time you make a change, cross that item off your list with a big, fat, red pen. Keep it stuck where you can see it.

Review the second list you made, of things you can change, but not necessarily now. Look at the things that didn't get onto the 'change immediately list'. There will probably be one or two things that you now, with eyes fresh from making your life better, think you could change, if not immediately, then almost immediately. Move them onto your 'change now' list. Do your best to make those changes.

From the first list you made, you will be left with some things that didn't make it onto the lists of things that can be changed. Go back and review that list now. Go back and review that list with the eyes of someone who has just changed his or her life for the better and you will probably find that there are items there that you now think can go onto the 'can be changed list'. Put them there.

Look at what you have left on your first list. Look at it long and hard until you are sure that there is nothing there that can be changed, or nothing there that, now that you come to think of it, you want to change. I'm betting that it won't be nearly as big a list as you started out with, and I'm betting that the few things that are left don't seem so bad really. These are the external stressors we just have to learn to accept, and they're not that bad really. Life's not perfect.

But it is yours and it is precious.