Pain

Well, it's 8.27am. I suppose I will notice 8.28 and 8.29. The minutes will crawl by oh-so-slowly until I actually have to check the clock hasn't stopped.

Last night was a bad night. I got pain at about 6pm and it niggled and burrowed and griped and spasmed it's way through the night until this morning. I couldn't sleep and when exhaustion came I dreamed of pain.

When I said pain, it's a bit like I said nothing at all. Pain is like love or fear, it is a word totally shaped by our own experience of it.

Just for a moment, try a little experiment. Remember for a minute, the worst pain you ever felt. Maybe it was a broken kneecap, a kidney stone, sciatica or giving birth. But can you really remember it? Really? The body is an incredible, often magical thing and we are programmed to forget - if not, who would ever have more than one child? If you're truly blessed, the worst pain you ever felt might be a terrible headache or a sprained ankle.

In hospital they use pain scores. Every few hours a nurse will take your blood pressure, your temperature, your pulse and ask how you would score your pain out of ten. What kind of measurement is this? How can I score my pain out of ten when ten for me has been screaming delirium? When ten has been waking up from major surgery with no pain relief whatsoever? When ten has been just moments before my bowel burst and would have killed me? My ten might be your 73. I could be 9 cm dilated after 40 hours of labour, but I'd have to give it a seven!!

When I first got sick, I remember the doctor thought it was salmonella. He was sympathetic and kind, sent me home to bed with a clutch of treatments and a list of advice - drink plenty of fluids, eat dry toast, rest. I writhed and vomited, but it didn't go away. A few days later, the doctor was less sympathetic and after a fortnight, he really wasn't interested at all. I remember being taken aback - how would I survive? What was he going to do next? Why was it less worrying than the first week? The answers respectively were "You just will" "Nothing" and "Because I don't know what else to do."

So the weeks turned into months and the pain got worse.

It dulled my mind, I sat constantly with my knees pulled up to my chin, I avoided walking and I was always irritable. How could something feel this bad and not kill me?

Every now and then, a doctor would come to my house on a particularly bad day and shove a needle into my bum. Just a few minutes later, a warm, enveloping relief would flood through my body and the vice-like grip would release, slowly, slowly until I couldn't keep my heavy eyelids open any more and I fell into a euphoric, grateful sleep. I never knew what they gave me, but I often cried tears of sheer relief.

Over time, the unthinkable happened. I sort of learnt to live with it. Had it got better? No, it got steadily worse, but I was vaguely alive and you can't stay in bed forever. Slowly, I started to do more. I walked a little further, I found a smile to paint on. I went back to school, I got a boyfriend. If my friends wanted to go for pizza I went too, ignoring the red-hot stabs in my gut, rushing to vomit a while after as my body rejected the intrusion.

Slowly, people forgot. Not my Mum of course who held me night after night into the small hours as I cried out in pain and vomited until morning. But "people". When I said I couldn't go to this party or couldn't attend that class, they started to tut or raise their eyebrows oh-so-slightly. Human nature just will not allow us to believe that we could be that ill and survive. Even doctors start to look doubtful or cross. They ask if paracetamol helps and you look at them as though they must be speaking a different language.

And this is the big problem with pain. Once you've got it, there's very little you can do about it.

I imagine I just lost a few of you there. Of course you can do something about it. There are a whole host of painkillers, surely? Well, no, not really. There are low level painkillers like paracetamol. Usually as useful as trying to mop up the ocean with a sponge. Then there are NSAIDS - Non Steroidal Anti Inflammatories, such as Ibruprofen or Voltarol. The problem with these, is that they cause irritation of the stomach and few people can tolerate them long term. Someone like me, with a bowel disease can't take them at all as the bowel is so damaged and thin and weakened, they might cause bleeding or perforation. So that just leaves opiates - Codeine, Morphine Oxycontin or Pethidine and doctors hate these with a passion that is so deep (if often irrational) that they are out of bounds. Fine for an acute problem - a broken leg or a slipped disc, but a no-no if the pain is likely to last. They're addictive you see, and doctors live in terror of producing a junkie.

And here is the staggering, unbelievable point I have taken so long to get to. Most people in severe and chronic pain get no help at all from their doctors. Most people with Crohn's like me don't get pain relief. Most people search their whole lives for a doctor who will care or help or understand, but they never find one.
I got "lucky." Because of the surgical nature of my condition, there is something physical that a doctor can relate to. When my bowel gets blocked, it is called "obstruction" and doctors realise this is agonisingly painful. After 13 years of just putting up and shutting up, a new GP took pity on me and started writing scripts for a strong opiate painkiller. He trained me to give it by injection for times when I couldn't keep tablets down and my life changed overnight.

For the first time in over a decade, I had some control. I didn't have to just suffer, I didn't have to face long, lonely nights of desperation, never knowing when it might stop. I could plan things - holidays, appointments, parties and know I would be able to go. But what I didn't realise was, I had opened up a whole new problem that would hurt me and crush me almost as much as the pain.

From that day on, it was never about the pain. It was about the drugs.   To be continued......


**For anyone who relates to this post, PLEASE consider sharing your stories in the comments section here http://diaryofabenefitscrounger.blogspot.com/2010/10/share-your-story.html. The more voices come together, the more we are able to fight