Friday, 22 June 2012

Chronic pain or the pain secret I like to keep!

No one can really tell you what their pain is really like as everyone experiences pain in different ways. I like to compare pain to the way humans interpret colours - unless your colour blind and this sentence will mean absolutely nothing to you. The majority of us can see the colour red say fire engine red. However each of us sees that colour differently because our eyes and brains interpret the signals differently. Within fire engine red we are all seeing different shades maybe just slightly differently but we do not see it the same way.

So take that analogy and apply it to pain we all experience it differently. My headache isn't the same as anyone else's headache - please don't misunderstand I'm not making this a competition its just we all experience pain differently. I know that a headache can be painful - the clue is in the words! I can empathise with you because over the period of my life span I too have experienced headaches. But what happens when you are trying to explain how a pain feels but the person you are explaining it too has never experienced pain like it? Or doesn't understand the language you are using or the images you are trying to create with the words you are using?

So it makes me laugh when I am asked to rate my pain and for females you are usually asked to compare pain with labour pain. Labour pain is held up as the worst pain you will ever experience but with that statement you are immediately alienating 50% of the population who will never experience childbirth = men ( I know it makes a massive change for me to be on your side!) and its alienating to the growing number of women (like me) who are choosing not to have children or who are unable to have children. So how do you rate your pain on the pain scale if the number ten of pain (labour) is out of your realm of experience?

I use my collapse in 1998 with bowel adhesion's as my ten. The pain was so intense that day that when it initially started (I was at work) it made me double over and took my breath away. I thought that pain was pretty intense I had no idea that pain could be anymore intense than that. How wrong I was! By early evening I was lying on the sofa at home going in and out of consciousness my own screaming was making me wake up! I have hazy recollections of my then boyfriends (now my husband) panicking whilst calling the out of hours Dr's telling them if they didn't see me in the next ten minutes he would call an ambulance. I ended up in hospital overnight on a drip and was discharged the following day, it would be another month before I ended up in hospital again having an operation to remove the adhesion's.

I remember when I went into hospital with the adhesion's the final time and was told by the junior Dr I must have an incredibly high pain threshold - as I had been walking around with this level of stomach pain from the January until the July. The pain I went in with on that day was no more severe than it had been most days but I had come to the end of my tether with it and was physically and mentally exhausted by it all. The pain had worn me down despite my valiant efforts to try and ignore it and get on with my life. It took several doses of morphine to get rid of the pain completely, the rest of the next 5 days are a bit of a blur after that to be honest!

My collapse in 1998 is what I would call acute pain it was sudden in its onset and was vicious and unforgiving Ive only ever had that pain again once, back in the beginning of May this year. (This doesn't mean people don't experience acute pain). The chronic pain was the pain I lived with between the January and July that year- everyday a lowish level pain that would increase and reduce throughout the day but I could live with - although I suffered from the side effects of this chronic pain such as fatigue and generally feeling unwell.

I am lucky (you maybe scratching your heads at this one) my chronic pain is at a level that I can live with - not comfortably but I try not to let it dominate my life. Some days are more successful than others! If we go back to the pain scale 0 for no pain what-so-ever and 10 for the worst pain you have ever experienced in your life (July 1998, May 2012) I find it very difficult to gauge where my pain lies. I can not in my life remember a day where I had a zero level of pain, that's not through a selective memory, its just I've had pain everyday since I was a child. Because it wasn't incapacitating me I assumed that everybody had pain and just lived with it and never spoke about it. I realised early on as a child that even if you did complain about pain ( for me it would have been pain more than normal) no one really took it seriously. This doesn't include my parents - I'm talking about teachers and other children.

I can remember one day in school I got this awful pain in my face and it came on really suddenly. All I could do was rest my head in my hands. I told my teacher who eventually rang my mother. I will never forget what she said to my mother (as my mum told me as she was furious) " Rachel doesn't feel well she has a headache, we have maths today". I hated maths but not enough to feign being sick, Ive never feigned being sick to get out of doing something. I walked myself home from school my mother meeting me before I got all the way home. Mum took one look at me and realised that I was sick, so took me to the Dr's. Before I reached my mum I had vomited almost all the way home, I cant have been much older than 9 years old at the time! I was sick I had sinusitis and had lovely nose drops to take. What the teacher said stuck with me and after that I tried not to mention I was in pain. Pain meant being ostracised and not believed why would anyone put themselves in that position?

Years later I thought someone was my friend and when they asked me how I was I would reply honestly. What a mistake that was! This person turned on me one day in the office and said "I'm never asking you again how you are as all you do is bloody moan." I was devastated I had trusted this person with my pain secret and was now being called a whinger. It was a massive life lesson for me, unfortunately at the time I took the wrong lesson which was to try to never tell anyone exactly how I felt or if I was in pain. I should have taken the message that when people say "hi how are you?" it doesn't necessarily mean they actually want to know and its far better just to say "I'm OK thanks" and save the real reply for people who actually do care and understand that you aren't moaning all the time. It can be hard for people to understand if different bits of your body are hurting so much that you would rather they fall off than have to deal with the pain anymore!

The pain secret I keep has also at times back fired on me. It takes me a lot longer to go to the Dr's with pain problems (or in fact any problem). By the time I get there I am already severely incapacitated with the pain, I can no longer wait and see if its going to settle down of its own accord because Ive already done that. I know this makes things a lot harder for my Dr's but they are starting to realise that if I contact them I am at my Witt's end. When I moved to my new GPs practise it took a few visits to actually get the medication I needed to get my pain under control. I had to do the pain medication journey all over again, so paracetamol and diclofenic, paracetamol and codiene, tramadol and then morphine. I knew that the pain I had was not going to go away with the lesser pain medications I knew I needed morphine but I didn't want it= once on morphine the drugs available for pain reduction start being reduced as you are already on the big guns. I'm 38 with a long life (hopefully) in front of me I don't want to spend a lot of those years in pain.

So today what is my pain like? Its not good I woke up feeling like I had been dropped onto a concrete floor back first - I have never done that so I am assuming that's what it feels like. The point of impact is right between my shoulder blades. My abdomen feels like during the night I became particularly partial to snacking on gorse bushes (big bush covered in thorns) so every few minutes my intestines feel like they are being snagged on those thorns and generally most of the joints in my body are complaining to some degree that they hurt - apart from my neck, elbows and toes. So its a reasonable day. How would I score it probably a 4, its not the best day Ive ever had but its not the worst. I can still go on my laptop and pour out every thought that enters my head (this post started in my head last night). I may have to up my painkillers and apply heat pads in a while, but its OK Ive had worse.

So can you understand the pain I'm in? As I really struggle to describe it does being dropped on a concrete floor make sense to you? Does eating a gorse bush make sense? I really do struggle to make people understand - the phrases burning stabbing throbbing don't feel like the pain I experience - is it just me?

I look forward to your comments!

2 comments:

Em said...

being hit round the head with a cricket bat, is how i described it to the neuro. i get you completely. i lived with this cricket bat head for 7 months and the drs still didnt understand.

rachel you do that too, measure you days with the worse pain you had, then consider that today isnt so bad because ive had worse. ive done this since a child.

i get where you coming from with you nine year old story. oh my, how sad, that tiny little girl having to keep quiet because no-one believed her. this is so wrong, i was there too ill, unwell with gastro symptoms that no one would listen too.


if you ever want a whingefest, our own little moan to each other feel free to email me. the sad thing is ive gone past the point of wanting just one day without symptoms because i know its never going to happen. i plod on each day experiencing a crazy amount of problems due to eds/pots.

take care enjoy the weekend in our own kind of unique way. x

The Myasthenia Kid said...

Em,

Thanks so much for your comments. Ive been feeling guilty all night about the posibility that this post is a whinge fest!

You made me realise it isnt and that other people get it.

Thanks for sharing

Rach xx